Special Needs Discussion – Cleft Issues
Today is the first day of what is going to be a long series. Today I am opening the comments up for those families who have adopted a child with cleft issues to talk about your experiences. I would encourage you to share whatever you feel someone considering a child with a cleft issue should be aware of. Please be specific as to what issue(s) your child has, how old they were at adoption, and how long they’ve been home.
In the case of multiple issues, I encourage you to write about both issues in one post and then copy and paste it into both days.
Feel free to share the tough stuff as well as the good stuff. And if the emotional/attachment/sensory issues have been harder to handle than the child’s medical special need then feel free to talk about that as well. It’s not going to be seen as complaining, it’s going to be seen as telling it like it is.
I will encourage those who are open to it to share your forum name, in case someone wants to PM you with specific questions. Or if you aren’t on the forum and would like to leave another way for people to contact you then feel free to do that as well. If you aren’t comfortable doing that then no problem – we’re happy you shared and you aren’t obligated to answer questions. But if you are open to it then I’m sure there are some who will appreciate it.
Everyone please remember the Be Nice rule. No condescending or snide little remarks towards those who are sharing the tough stuff. Comment on your own situation without commenting on those who have commented before you.
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Special Needs discussed in today’s comments are:
- Cleft Lip, Cleft Palate
- Cleft Lip, Cleft Palate, Cleft Gum
- Cleft Lip, Cleft Gum
- Cleft Lip
Some of the descriptive words used are: unilateral, bilateral, alveolar, soft palate, hard palate. Some children were given pre-adoption surgeries, others were not.
March 14th, 2011 at 8:29 am
Our daughter was adopted in 2009, CL/CP, at the age of 5. To me personally the cleft stuff has been doable. The surgeries are always rough though, and I thought that since she was repaired in China, we would not be looking at further surgeries, and that is not the case. We have had the zplasty to help with speech (which was a total success) and the bone graft with a lip and nose revision. The bone graft did not take and we are now looking at a redo for that. The orthodontia is also a factor, although its so nice that it is covered under insurance as a medical need. We also have speech once a week. Her repair in China was done pretty poorly from what we can tell, so some of the surgeries have been a redo of those things. Because of the poor repair she will never be able to “look” as well as she could have had her doctor done the repair himself. Of course to us she is beautiful, and we could not be happier.
The thing about clefts is there are not any two that are the same, so my experience could be very different than your experience. I guess in that regard you have to be up to the unknown. I would gladly adopt another cleft child. Its not very bad to me. I can say we have a very awesome team to help her, and that has made the difference. Our doctor has his own SP to work with his patients with cleft issues who have been trained in cleft kids. Her speech has not been a big issue.
Again though, I will say the emotional issues have out weighted the medical a million times over. The surgeries actually always help us with attachment…..I suppose it helps her to “need” us and to see that we WILL take care of her.
I am always happy to answer PM’s. My screen name is the same on the forum, and my blog is also listed in my signature line.
Overall our daughter is just a normal very smart, and healthy little girl.
March 14th, 2011 at 9:12 am
I’m so glad you are doing this. And thanks in advance to all who will leave their comments! We are waiting for a referral of a SN little girl. Our dossier should be leaving for China later this week.
Cleft lip/palate is one of several SN we said we’d accept. I want to know what the possibilities are…good and bad.
March 14th, 2011 at 9:28 am
This is off subject but not sure where to put it…Congrats on being named one of the “20 best adoption blogs” by Adoptive Familes magazine in the current issue.
March 14th, 2011 at 9:40 am
We are home 3 months with our 2 year old princess. She has cl-cp grade 3 (most extensive) and Hepatitis B.
She had no surgery in china. I was prepared for her from photos as were my dh and son of 7 years. When we were actually handed her I was alittle shocked as it immediately looked worse than I imagined from the photos. I quickly composed myself and never looked back. One thing that I was NOT prepared for were the stares in the street from the chinese people. Not because of the adoption as we were in GZ the whole time but people actually asked me why we wanted one like that and not a NORMAL one. This hurt as I also had my ds to consider who was also standing listening most times. We travelled in a group of 14 families and we were the only SN adoption so stuck out like a sore thumb.
I was glad to get home and immediatly planned surgery. She was operated on her lip and soft palate together one month home. She did fantastically well. She has had her arms in slints so she cannot bend them so cannot reach her mouth which is full of sutures for 42 days. This in turn meant she cannot walk alone as if she fell she cannot put out her arms properly to save herself. She has been carried around and did not understand why we wouldnt let her down. It did not have any negative affects on attchment. She had her splints off last wednesday and is the happiest girl in the world. We have been told her lip is not perfect and never will be as she is very old a 2 years and alot of growing has taken place and the hole was huge. She will need her hard palate closed when she is 4 years old. At 9 years old a bone graft to close her gumline and then orthodontist to fix what is missing. At 12 years a nose repair as her nose will flatten and turn slightly as she grows and at 12 they will put it in its place before her teenage years are affected. She will also need speech therapy. I asked last week and they said to wait alittle longer as she is only one and half months post operative.
Concurrently we are seeing the digestive specialist to get her liver as healthy as possible. We have all had blood work done to make sure we are vacined against hep b.
She had a beautiful smile in her photos from china with her cleft lip and one thing we noticed when we saw her post op is she has lost her smile. I can now say one and half months post op and sutures are falling out of her palate every day she has recovered her smile. She is one happy little girl who will need interventions yes but so far was worth every minute of the wait and more and has lit up our lives. She is a pleasure to have as a daughter and a brillient little sister who loves to play rough with her brother. She can say some words now but most importantly she calls her mama.
March 14th, 2011 at 9:47 am
Our DD was adopted at 19 mos old- unilateral CL repaired, CP unrepaired, has CGum too. She has had CP repair here, ear tubes placed, mild- moderate hearing loss which is repairing itself, and constant nosebleeds, due to her cleft. That is about the extent of her immediate medical needs, which for us are easily managed due to location of medical facilities.
She has started speech because at 27 mos. now, she is frustrated and angry that we do not understand her 80% of the time. We utilize all sorts of creative ways to communicate which I will not go into here, but she functions at least at a 12 mo. old in regards to speech. She has gained some basic sounds and increased movement of her repaired lip, it will be slow going and we foresee years of speech- evals and appointments. She gets speech 1x week for now, and just got qualified to add another 45 min.
I am fortunately a SAHM with another toddler who gets speech, my older kids are in school- it makes it a whole lot easier with the appts. for follow up for ENT, Speech, and Cleft Team. We’ve still had to call in help (grandparents)when we knew the appts. would be long/all day at the hospital or offices for example when we were setting up all the evals prior to surgeries, those took a few trips to CHOP for a two weeks. She’ll also be needing another surgery at age 6 for her cleft gum/bone graft and possible palate expanders and also to be determined revision of her nose because it is partially collapsed (which causes her constant nose bleeds cause of the thin membranes-those are a real pain!) She will need orthodontist work because of the extent of her mouth being affected by the cleft as well. Fortunately for us PA has an awesome MA system for CP kids, covers most of all of our copays for her, wonderful for us when you think of all the finanacial costs involed.
My biggest concern is her self image, how she views herself in relation to her peers and how she processes that, with our love and help in addition to adoption related identity issues. She is too young now, so we shall see how that goes in the future. One thing that always amazes me is when people ask”what is wrong”, at this point I feel at liberty to educate cuase she is a bit young but the time is coming when I’ll have to end that and decide which way to proceed. I feel like we have to educate cause people have this perception that once the surgery is done, that’s it and having a cleft kid is not a “that’s it” type of special need. Each sn kid has their own challenges and whether it’s speech, appearance etc…it’s not “easy”. She is an amzing kid and we are so fortunate to be her parents but we are prepared for many years of struggles, of watching and guiding her through those moments of why am I different- why do I look different- am I beautiful even with my clefts etc….if anyone has questions, pm me, our blog is http://www.loveisinthewaiting.com, password- oreo, most of her medical stuff is on there. She is a strong, beautiful, curious, active little survivor, our peanut!
March 14th, 2011 at 9:55 am
I made a post on my blog about this last year
http://myshelbybaby.blogspot.com/2010/01/cleft-issues-you-deal-with.html
March 14th, 2011 at 10:19 am
Our DS was 19 months at adoption with repaired cleft lip and unrepaired cleft palate. He was in a group foster home in Beijing but was originally from Shanxi. We believe his lip repair was done when he was between 4-8 months old. He was very well taken care of to the point of being quite the little emperor for a while. He could eat anything but could not drink out of a straw or regular sippy cup as cl/cp kids can’t suck. He drooled like crazy! Food and liquid came out of his nose, which after the first couple of times, I hardly noticed anymore. The first time I looked in his mouth at his palate I was shocked. I had seen pics but when it is YOUR child, that first look was almost painful. Then it became no big deal! Besides being slightly developmentally delayed and obviously speech delayed he was a normal toddler. He had a few institutional behaviors but those have lessened over time. We had early intervention come in right away and he received his first speech therapy within a month of coming home. While we had researched CL/CP extensively, I was not prepared for the fact that his surgeries could fail. This was the hardest part as I felt I had failed him in some way since the surgeries failed. His first surgery to repair his palate came at about 6 months home. They repaired his palate and put in ear tubes. After about a week home we noticed his palate repair had failed. I was crushed. His next surgery was 6 months later to once again try to repair his palate. This one also failed and I was once again crushed. I hated putting him through the surgeries (even though he is amazing about the hospital) and the fact that each time his palate repair failed, it delayed his speech even further. We made the decision to change our insurance and surgeon. BEST decision ever. There is great debate amongst CL/CP experts about whether to take out the tonsils and adnoids before the p-flap surgery. After much research, we decided to have his removed, which was another surgery. A year after his second failure, at age 3 1/2 he had a pharyengal (sp?) flap surgery done to repair his palate and a lip revision. It worked! We could notice a difference in his speech right away but it took about 6 months for his speech to explode! He has gone from being intelligible about 10% of the time to about 50% of the time and is improving every day! He is so proud and happy that people can understand him better now! He attends speech therapy twice a week for an hour each time. Insurance pays for one hour and we pay out of pocket for the other.
His speech pathologist said she believes he will be almost totally intelligible by the time he goes to kindergarten in a year and 1/2. I feel like that is a miracle! He just also had surgery on both eyes for lazy eye. So since he has been with us, in 2 1/2 years, he has had 5 major surgeries-not quite what we expected. In the future he will need a bone graft surgery and jaw surgery for his underbite. He will need lots of orthodontia as he has funky teeth on the top, some of which are fused. He will need a lip/nose revision and septum (CP kids have deviated septums) repair when he is in teens. These all seem easy to us after the last 2.5 years and 5 surgeries! Some things I recommend are to check your state laws, many states have laws that insurance MUST cover everything to do with the CL/CP until the child is 18. Check with your school district to see what kind of services they have for speech delayed kids. Our biggest disappointment has been in our school district, they said DS would only receive 30 minutes of speech each week with 5 other kids! Like that is going to help him!! We plan on putting up a BIG fight once he is in kindergarten. Research the CL/CP teams in your area. Ask other parents of CL/CP kids for recommendations.
My biggest recommendation is to not consider this a minor special need. All cleft kids are different and all their medical and emotional needs will be different. While I would adopt another CL/CP kid in a second, I found this need to be medically a lot more than I expected.
I am also happy to answer PM’s, same screen name.
Our son is an AMAZING kid, very healthy and stubborn and is my hero for how he has taken all this in stride.
March 14th, 2011 at 10:33 am
cljohnson33919 here. We have two cleft kids and I agree that they are all different. Both of ours had repaired unilateral (one sided) cleft lips and unrepaired palates. One daughter had just a hole in the middle of her palate. She had it repaired,ear tubes,a year of speech, and speaks very clearly at age three.
Our older daughter had literally no roof to her mouth at all–doctors called it a large horseshoe shaped cleft palate. Because of that, she had more speech issues and needed another palate surgery later. She also had a complication from that surgery called stenosis–her nasal airway scarred closed when it healed. She had repeated surgeries to re-open it (she couldn’t breathe out of her nose at all) and finally, our new doctor made her a new nasal airway in the back of her palate, and she can breathe again! She also has perforated eardrums which have not resulted in any significant hearing loss, but will require a graft eventually.
Both will need a bone graft to correct the cleft in their gum (many have a split in the gum right under the cleft lip). They have a missing tooth there, and the bone graft will enable them to either move an existing tooth there through orthodontia, or have an implant later. Cleft kids typically have missing teeth, extra teeth, and need orthodontia in two stages–one starts when permanent teeth start coming in, and the other later on. We have had a lot of problems with crowding, and quite a few baby teeth pulled, to allow the permanent teeth to come in. Speech is still an issue for our 8 year old, but doctors feel that orthodontia will help with that, so we’re getting that started now.
Overall, my dd’s are healthy, very intelligent, happy kids, and have no other problems. They are my treasures and I am so grateful to have them in my life! Feel free to email me with any questions.
March 14th, 2011 at 10:49 am
Ricky was adopted at almost 17 months old with a repaired bilateral cleft lip and unrepaired palate. China said this was a second degree cleft. The US doesn’t rank clefts. His cleft went through the gum. His lip was repaired in China at 7 months old. We repaired his palate at 19 months old here in Atlanta. The sugery did help us with attachment as well.
The one thing I can say is be prepared for the unknown. It isn’t really the surgeries that affects us. It is the speech or the lack of. Ricky really didn’t start talking until age 3. He has been in speech therapy since 20 months old. He is now 4 1/2 and very delayed in speech. It can be frustrating for all when he cannot communicate his needs to you. We did teach him sign when we first came home and that did help. But now is now more advanced in words than his sign so he does have alot of frustration. We will be looking for additional signing classes if our next surgery doesn’t work. Everyone feels if our next surgery is a success, Ricky’s speech will improve.
As far as surgeries, you also need to be prepared for things not to work for whatever reason. We have had 5 palate surgeries – all of them had some sort of failure with them. The last 3 were attempts to do a phalangeal flap – they all failed. We are currently looking into other cleft clinics in the Southeast and Northeast. I never expected to have to travel out of state for his needs. Yes we are the unusual one but you need to be prepared for that. We have also had 3 sets of ear tubes the last one was suppose to be permanent. Well one fell out so it will probably be replaced at the same time as our next surgery.
The biggest thing I can say about adopting a cleft child is that speech is an every day need. It affects everything we do. If affects Ricky every day. You need to be prepared for speech therapy at least once a week, if not multiple times a week.
I also agree no two cleft kids are alike. Be sure to make sure your cleft team treats your child for their particular issues not part of a standard treatment of how they typically deal with cleft kids. I’m learning this is the mistake was made for Ricky and why we are looking elsewhere.
Overall, Ricky is charming, rock star personality kid that goes with the flow. I wouldn’t trade him for the world.
my forum email is jbzanie as well. Feel free to send me a personal message if you need to ask more questions.
March 14th, 2011 at 10:53 am
my daughter was adopted at 15 months with a cl/clp. her lip was fixed in china at four months and they did a phenomenal job. no mortification is needed.
because she was so hard to feed she was 13.5 pounds at adoption. a year later she is 24 pounds.
she had surgery to repair her palate at 19 months. it was a tough two weeks but not bad after that.
she has to have two more surgeries – possibly three. one before kindergarten to fix her nose (one side is collapsed and they didn’t fix that with her lip). the other is the bone graph at around age 9 to help her adult teeth come in.
she MAY need a surgery at around four if there are issues with her speech (p-flap).
she goes to speech therapy two times per week.
she’ll need major orthodontia. in our state currently the insurance doesn’t have to pay. there is a bill right now that would require insurance companies to pay because it’s needed due to a medical reason. it varies by state. if our insurance does not pay it will probably cost around 7K.
cl/p can be a risk because if it’s due to a genetic factor it can mean there are other issues. it’s really unclear what percentage of cl/p kids have other issues…it’s confusing research (at least to me).
this sounds like a lot but it’s been VERY manageable. we were soooooo lucky. my daughter is awesome. the only ongoing “work” for the next couple of years is her speech therapy.
i HIGHLY recommend the adopting cleft children yahoo group. there is no advocating for adopting cl/p children. if anything people are really honest. there is a wide variance of what cl/p children need. some need as many as a dozen surgeries, while others like my daughter once home only needs three…maybe four.
another factor is if the palate was repaired in china. the best repair is doing it right the first time. if the palate wasn’t repaired well in china, the child would have been better off not having it repaired until home. i would rather adopt a child with an uncorrected palate than one that has been fixed in china. that being said, i’m sure there are a lot of kids out there with palates that were repaired correctly in china.
March 14th, 2011 at 11:11 am
My son was adopted at age 23 months with CL/CP. His lip was repaired beautifully in China at age 8 months. His palate repair was done here in the U.S. at age 26 months. He also had his first set of ear tubes at this time. Also, he was tongue tied and had that repaired during the palate surgery. He recovered well, but months later, developed an anterior fistula (hole) in the palate.
At age 35 months, he had his second set of ear tubes. He had pretty frequent ear infections within the first year home. The tubes did help, but he’d still occasionally get ear infections. He still gets frequent sinus infections.
Our biggest challenge related to the CL/CP has been speech. My son had moderate-severe hypernasality. He was diagnosed with velopharyngeal insufficiency (VPI). Before we adopted our son, we did speak with an international doctor. This doctor told us that VPI was pretty rare and not to worry about it. Honestly, it was kind of glossed over by the doctor. From what I understand, VPI occurs in approximately 30% of CL/CP cases. Basically VPI is when there is insufficient closure of the soft palate muscle allowing the air to escape through the nose causing hypernasal speech. Due to my son’s speech difficulties, we were thankful to have taught many basic sign language skills when first home. He picked up on signing very fast, and this greatly reduced his frustration and increased his ability to communicate with us. Teaching him to sign did not impede his learning good speech or wanting to talk. I’ve heard people say they are reluctant to teach signing because they are afraid their child won’t want to use speech. This was not the case for us. He still talked, just not clearly, and the signing was a huge help for him and us.
After he was officially diagnosed with VPI at age 4 through nasoendscopy and video fluroscopy, he was recommended for a pharyngeal flap surgery. A month before turning 5, he had the p-flap performed. This was a tough surgery and the most difficult recovery by far. He did very well with the surgery and it was a success. He has very mild sleep apnea as a result of surgery, and it is currently being monitored. His speech has improved dramatically.
Just 6 months after the p-flap, he had the anterior fistula in his palate repaired. This fistula was causing air to escape through his nose and he was still having hypernasality. The fistula was repaired using a hip bone graft. He recovered well from this surgery, and with a careful post surgery diet, the fistula has remained closed. Once again, huge improvement in speech and hypernasality has decreased to an almost normal level.
We do speech with a private therapist weekly, and he receives speech 3x a week in school.
For us, this has been a manageable SN. The surgeries are never easy, but he handles them so well. We found that preparing him has worked best. He’s the type of kid that wants to know exactly what is going to happen. If he’s prepared, he handles things much better. We are looking towards the future now with orthodontia and another surgery around age 7-9 to repair the gumline using another bone graft.
In our case, the emotional issues have been the most difficult. First of all, we had many people treat our son poorly due to his speech difficulties. We had speech therapists tell us that our son was “just being difficult.” They couldn’t understand why he couldn’t produce certain letter sounds. It was ridiculous! I had one therapist actually tell my son that “mommy will have to leave (the room) if you don’t try harder.” That was seriously the worst thing she could have ever said to my son who suffers from abandonment and attachment issues. I still can’t understand how she could so blatantly tell my son that his mom would have to leave if he didn’t start to talk. That was the last session with her. He was trying hard. He just didn’t have the capability due to severe VPI to make those sounds. Another speech therapist in the Head Start program also thought he was just being stubborn. She upset him to the point where he vomited in her office. He was only 2 1/2 years old at the time and simply was unable to make those sounds. After p-flap, at age 5, he *finally* was able to make B, P, and now pretty much all sounds. It was a mechanical issue, not a “your child is being difficult” issue.
I mention all of this because it is imperative if you have a child with CL/CP and speech issues, find a speech therapist who knows these children and understands their needs. You really have to know how to advocate for your child.
Other children have also been mean to my son at times due to his speech. It’s really tough to defend yourself when you can’t get the words out to do it. It’s heartbreaking to say the least.
As for attachment and trauma issues…I’m not even sure where to begin, and I know this is getting way too long! :)
The attachment and trauma has been so difficult and by far harder than the physical SN. This could be a completely separate entry, but I will try to summarize: Our son had severe night terrors. They were frequent and they were fierce. He’s been home for just over 3 1/2 years, and he still gets them occasionally. Sleep is very, very difficult in our house, and the good nights seem to be few and far between. He attempts to control everything and can be manipulative. I’d be happy to share more details privately on this. Just ask – PM or email me!
I will say this in closing – I really thought we were totally prepared for the attachment stuff. I’m a clinical social worker. I did lots of reading on attachment and early childhood trauma. I talked to other adoptive families. Despite all this, I still really didn’t have any true idea what we were in for until we were actually dealing with it. I hoped my son wouldn’t have these issues since he was relatively young and in a foster home. Sadly I was wrong. Attachment is an ongoing process. It has gotten better for us. A lot better. But it doesn’t just magically go away. We have to work on it continually.
My son is an extremely smart, overall healthy, charming, and very determined little boy. He is the purest form of joy I’ve ever known, and I love him dearly. I’d do it all again. No question. :)
March 14th, 2011 at 11:20 am
We have adopted two children who were born with cl/cp.
DD came home at 35 months old with both cl/cp unrepaired as well as complex CHD unrepaired. I share that last part to explain why her palate repair had to wait until she was 4.5 years old. She had OHS a week after we got home and cl repair 6 months later and another heart procedure at one year home. Then her palate repair at 1.5 years home (at age 4.5 years).
DD’s speech is improving but she is 90% unintelligible to most people. She has one hour of private therapy once a week here at our home, which we must pay for out-of-pocket. It is $90/hour. She also has 1.5 hours of speech at our local school through Early Intervention. She can continue with this for many years I suspect and we are required in our state to have an IEP meeting every 3 years (or sooner if a team member calls it). This is free.
Personally, I think the private therapy is much more effective, mainly b/c it is private and the school therapist has to meet with DD and 2 other children (not her fault; just the system).
DS, adopted at 5 years and a few days old. His heart (also CHD along with Cl/CP) was repaired in China at 2 years old. His lip and palate were repaired the following year before his 3rd b-day as far as we can piece together from photos we have. We do not have any documentation of his palate repair though.
His speech is already becoming more intelligible than DD’s and he has been home 8 months and DD 2.5 years. They are 4 months apart in age.
DD will most likely need a z-plasty, but we have an appt. coming up in a couple of weeks to do nasality testing again. At that appt. I suspect we’ll be given surgery date options. Both DD and DS are due for a lip/nose revision. We are planning to schedule those same day. May sound crazy but we think it doable and we have lots of support here in town and live close to the hospital. The surgeon is game and this is not something he automatically does, so he feels we can handle it. We shall see.
My last comment will be while I love seeing cleft-affected children come home, to me (based on our experience) I don’t think it minor. We did adopt two *older* children (especially DD with unrepaired palate at almost 3), so that definitely plays into my opinion on this.
But knowing DS and DD also have complex CHD and what that entails, I still consider the cleft to affect our day-to-day much MORE than their heart needs. Again, just my feeling on it but their lack of ability to communicate effectively (to peers and others outside our home) really does affect their lives at 5.5 and 5.75 years old.
I applaud RQ for taking this turn on the SN discussion. I am hopeful this series will be very beneficial to many who are either considering the adoption of SN children and/or parenting them. I have been very blessed to often network with other parents who understand the unique journey of parenting children with SNs.
I am happy to share privately with anyone who would like to ask questions. I feel like I have always been honest and kind. I hope so. That is certainly my intent. I also do not suger-coat and though I feel the heart needs are not as difficult, I do respect that for others that is a need they cannot consider. No flames here from me. This is just the path we took to find our children. I wish all well who are on the path to their own children.
Feel free to PM me as well for my blog address. I have not shared lately a speech update lately. I will try to get that done soon. I have shared recently about some heart issues, so for anyone considering that need you can read about that on our blog as well.
Again, thanks RQ for what will hopefully be a very productive and informative discussion.
March 14th, 2011 at 11:27 am
forgot to add that we don’t “grade” clefts in the US but china does. i was told that my daughter’s cleft was a II but it was really a III and a lot wider than her paperwork indicated.
March 14th, 2011 at 11:32 am
Our daughter was two when we adopted her in 2008. Prior to her adoption, she had a surgery to repair her cleft lip. Her craniofacial team in the US has commented on how well done her surgery was. In addition to her lip, her facial cleft has affected her nose. One nostril did not fully form. At this point we are unsure of the underlying structure of her nose, i.e., if a nasal passage exists. Although her plastic surgeon believes he will be able to construct a second nostril, it will require her to wait until her face has matured. He is concerned about her outgrowing her surgery and having additional scarring due to multiple surgeries. He predicted the surgery would occur around age 12. Up to this point, my DD has had few negative comments from her peers about her nose. Some children have noticed, but few have been unkind to her. She has begun noticing it herself more but does not seem too troubled by it. She has asked me where I got my extra nostril though.
Beyond the cosmetic issue for my DD, there are a few related concerns that we must deal with each day. The tear duct on her right side does not drain which means there are often tears and matter that build up in her right eye. Occasionally, we have to deal with the school or daycare confusing this with conjunctivitis. We are able to treat the symptoms with prescription eye drops and express any tears or mattering in the eye before she goes to preschool. This may become more of a problem and distraction for her when she attends elementary school according to her ophthalmologist. The second related concern is sleep apnea. Unfortunately, we did not recognize the symptoms until she had been home for about two years. We just attributed her kicking and thrashing about at night to being a restless sleeper until my mother recognized her symptoms were similar to my father who was diagnosed with sleep apnea. After my daughter’s sleep apnea was confirmed at a sleep clinic, her ENT prescribed a nightly dose of Nasonex to open up her nasal passage while she sleeps. This has improved her sleep, and she requests it each night at bedtime.
My daughter has been in speech therapy for the past two years which may be partly due to her cleft lip. She has made tremendous gains from her early intervention and preschool speech therapy and will likely test within the typical range prior to entering kindergarten this fall.
In considering the expense and daily effort involved with her special needs, they have been quite manageable. As a resident of Ohio, the Bureau of Medical Handicaps has assisted us in covering our deductible and co-pays when she has visited the sleep clinic and had surgery on her tear duct. We follow up with her craniofacial team and ophthalmologist once a year. We also schedule her appointments with the dental clinic at our children’s hospital rather than our family dentist to ensure all issues with her cleft lip and possible future need for orthodontics are closely monitored. Although she arrived home missing one incisor in her upper jaw, two more incisors erupted within two months. This may or may not be a problem when her permanent teeth come in.
Prior to my DD’s adoption, we were prepared for more time-consuming medical issues and more frequent surgeries than our current reality. Our main concern now is getting her to adolescence with minimal emotional pain. She is one of the most outgoing, friendly children I have ever met which hopefully serves her well in avoiding the possible teasing that awaits her in elementary and middle school.
If you have any questions, my forum name is KristenOH.
March 14th, 2011 at 11:50 am
The discussion this week is wonderful.
My daughter was adopted from China at 3.5 years old with a repaired unilateral cleft lip and palate. One thing to remember even if it is repaired cleft you will have ongoing doctor appointments. I was not fully prepared for a child with a cleft palate and lip.
Fortunately her surgery was funded through a US Foundation and was well done.
She has difficulty with her ears due to a muscle that is damaaged when the cleft occurs. She sees her ear, nose and throat specialist (ENT) at least twice a year. She has two sets of tubes inserted in a 2.5 year spand. And we constantly struggle with fluid and wax build-up. Which leads to ear-infections.
She sees a speech therapist regularly to help her with her speech. This is through our school district. It has been a tremendous help.
She sees her oral surgeon annually. She will need a bone graft in the next three years. One of her teeth was displaced in is growing in the cleft. It will need to be surgically removed. She also needs plastic surgery on her nose.
She sees an orthodontist annually and she will also need extensive orthodonia.
It has been amazing to see the tranformation in just 2.5 years. She was so shy and introverted when she first came home. Now is so outgoing. I would adopt another child with a cleft palate. I’m so much more prepared.
March 14th, 2011 at 12:04 pm
this is a good thing for PAP’s considering cl/p to read and also something you could provide a speech therapist that has not worked with cl/p children before.
SPEECH AND LANGUAGE CONSIDERATIONS FOR THE CHILD WITH CLEFT PALATE
http://www.samizdat.com/pp5.html
March 14th, 2011 at 12:09 pm
I adopted my dd at 2 years old and we have been home just shy of 3 years. Both her lip and palate were repaired in China. She is an amazing kid, and while the attachment issues were intense in the beginning and still play out from time to time (velcro baby at first and now some anxious attachment is still persists) I feel like the emotional issues have been manageable.
I did a lot of research going in and thought it would be easier than it has been. I really believe I saw what I wanted to see. Thought that because her palate was fixed relatively early (14 months), by adoption standards, her speech wouldn’t be impacted to the degree it has. My dd had moderate hearing loss due to fluid, which was corrected by tubes. Her hearing is now normal, but I’m sure only added to the speech delays. She was in ST once a week through EI for the first year and then twice a week for the past two (both through the school district and privately). She will have a p-flap surgery for her VPI in June, which really scares me, but am hopeful it will make a difference in being able to understand her. The twice a week ST sessions take time, as will the surgery, but I did expect the time element. What I didn’t think about, though, is how hard it is to not understand your child when she enthusiastically wants to share, or watching her peers not understand her and her saying “nothing” rather than repeating again and again. It breaks my heart a little. I feel like I have grieved not having the conversations with my daughter that I hear so many of my friends have with their toddlers. My dd has made great progress, but continues to be a year behind in both her expressive and receptive language. She will start Kg in the fall, which is a worry. It is always trying to find the balance of protecting her from things that are over her head, but not holding her back when she needs a vote of confidence that she can do it. When your child can’t communicate very well it is hard to get an accurate picture of what they know and what they are learning.
In addition to the speech related issues, there have been some scares about what could have been syndrome related issues. In addition to the cleft issues, we discovered a kidney issue (not a major one), and then eventually a “surprise” minor heart defect. These could have been indicative of a syndrome, but were relieved to discover were not after doing some genetic testing. The kidney and the cleft palate issue are likely to be related due to their developmental timing (didn’t now that going in). While the heart also develops at the same time, my dd’s heart defect turns out to not at all be related.
My poor dd has has had a few other potential medical issues crop up that were not listed on the referral info. So, while the cleft has impacted life some, its the whole picture of her medical profile that has been more challenging emotionally and timewise. Thank goodness, none of it life threatening, just scary.
My forum name is the same as this one. Feel free to PM me with any questions. I have learned soooo much from this site and would love to help someone else, too.
March 14th, 2011 at 12:14 pm
We adopted our cleft-affected son in December of ’08. He had his lip repaired in China (done amazingly well!), and his palate (3rd degree) repaired once he was home, at 22 months. Our surgeon did not believe in the stints for his patients, so we never had to deal with those, thank goodness! Aaron went through the “normal” recovery post-surgery, complete with a LOT of medication and MANY sleepless nights, but we were prepared for that. :)
He started speech, physical, occupational, and nutritional therapy soon after his surgery. He graduated out of all therapies (besides speech, of course) before turning three. Once he was three he was tested (and qualified) for a special preschool program (that was focused on speech development) in our district. The services were provided at no cost. He attends preschool 4 mornings a week.
Aaron turns 4 at the end of this month, and I cannot even explain how far this child has come in the 2 plus years we’ve had him home with us. HE IS AMAZING!! His speech has come so far that his teachers are cutting his program down in hours and taking him out of the extensive speech class. He started reading last month, can be understood by others about 80% of the time (100% of the time by his big sister!), and is just an absolute JOY to parent.
We know the future will hold more surgeries (and for SURE braces!!), and we certainly know he/we may deal with emotional issues as well. It’s SO true that every cleft-affected child has a different story, and you have to be prepared for ANYTHING. When we first accepted his referral I was on those cleft boards all the time. But after a bit I decided that it would be healthier to read the basics and then deal with things as they came to MY child. Not putting my head in the sand, no. Just reading the facts once and then taking it a step at a time once we were home.
You can read more about Aaron at 4loudenbacks.blogspot.com, and I am more than willing to talk about ANY part of our journey. You can access my email through the website.
March 14th, 2011 at 12:21 pm
DD became part of of out family in December, 2009 at the age of 28 months. She lived in the CWI until her lip was repaired in Qinghai at the age of 8 months. After lip repair, she was placed with a foster family until adoption. The foster family had a 12 year old daughter and a 2 year old foster boy.
DD’s palate was not repaired. It was a 1 cm gap from her gum through her uvula.
With a wide open gap,DD ate almost everything, but very slowly. I am guessing this is why she was so tiny. At 28 months, she was 19 pounds and 30″. I imagine that meals were served in the foster family and when they were done, the food was gone until the next meal. When she came home, she was allowed to eat all day long and she quickly gained a pound a month.
DD’s palate repair was in late-February, 2010. She recovered well. No one has yet mentioned the night terrors associated with surgery in the little folks. For 2 to 4 weeks after surgery, the night terrors happened. As the pain subsided and the pain meds were cut back, things got better.
DD’s surgeon wanted her in arm restraints. That lasted about 3 hours. DD did not put anything in her mouth, so I did the mommy thing and said, “ah, what the heck.” I put the no-nos in her toy box.
The surgeon also wanted her on baby food for 6 weeks. The first 2 weeks were OK as she wanted no solids: it hurt too much. After the 2 week post-op, the surgeon re-iterated only baby foods. We went home and had Mac & cheese (overcooked and mushy). She started on other soft foods like soft-boiled eggs, very ripe pears. By week 4, she was eating French fries and hot dogs in very tiny bites. ( against surgeon’s recommendation).
Why do I mention this? There are multiple surgeries for cleft kids throughout their childhoods. You better be a parent who can cope with surgeries and make judgement calls about how to handle it. Maybe, you will need to get second opinions or switch surgeons. Maybe, you will need to travel thousands of miles to find the surgeon who can help your child. Maybe, you will go through several speech therapists to find the right ones.
Gotta go, DD is calling.
March 14th, 2011 at 1:10 pm
Our DD is currently 3 years old. She came home in October 2009, at the age of 21 months. Her lip had been repaired perfectly when she was 6 months old in China. Her palate was repaired here, just after she turned 2. During that repair, the surgeon also did a little work on her nose (the left side was VERY small and hard to breathe out of) and just a tiny bit on the inside of her lip. She stayed in the hospital 1 night only.
She started speech therapy before that surgery to get to know her therapist.
Then, a few months later, I discovered she was tongue-tied. I took her in to the surgeon’s office and he agreed with me. So we scheduled another surgery to correct the tongue-tie and do a little more work on her nose.
We are now 12 months post-palate repair and 6 months post-tongue-tie repair. We still can only understand about 20% of what she says. I had no idea her speech would be such an issue. We recently saw the cleft team and the speech pathologist thinks we are looking at something unrelated to her cleft, like Apraxia of Speech.
She will have bone grafts and major orthodontia work. The orthodontist we’ve seen has said that her teeth look better than most cleft kids he sees. But there will still be major work done.
March 14th, 2011 at 1:15 pm
Our situation is a bit different, but perhaps can give some information about the range of this need. We are in the NSN line, and did an interim adoption from Kaz. In Kaz, there is no separation of NSN and SN. You evaluate each child shown to you, and most have either a real or perceived SN (or both).
We were provided info about a 7-month old boy with a repaired unilateral cleft lip, and quickly learned what we could about cleft issues before agreeing to adopt him (a day later). He also has a cleft gum line and unusually-shaped palette (but not cleft). Because his palatte is not cleft, many of the most difficult things assocaited with kids with clefts don’t apply. He has no hearing or speech issues and is actually one of the most articulate toddlers I have known. He can repeat anything he hears exactly – I think he may grow up to be linguist :)
Even with the mild range of his cleft, he will need a lip/nose revision, bone graft, and significant orthodontia. We are also preparing to help him deal with teasing as he gets older. Right now he is only 3, and on a day-to-day basis all we deal with are nose bleeds on the cleft side. Our biggest problem is getting the cleft team call us back and give us an annual appointment!
Another thing to think about in the long run, is that in many cases the cleft is genetic, so it is possible that our kids will have to deal with cleft issues with their kids as well.
March 14th, 2011 at 1:15 pm
We adopted DD at 28 months in November 08. She had a unliateral CL about 3 cm wide and a cleft aleveolar ridge. Based on her paperwork we thought her palate cleft extended into the hard palate, but we were surprised to find out in China that it did not. It was very difficult to decipher her paperwork in that respect.
Her CL had been repaired in China at 13 months, but the repair was pretty poorly done and had to be completely redone two months after we got home. Since then we’ve had one more lip revision and a laser procedure to reduce the size of her scar. Her lip still doesn’t look like it could have had the first repair been done better. She will likely need multiple more revisions and a nose job as she gets older. She will also need a bone graft in her gumline and extensive orthodontia and other dental work.
We were fully prepared for possible hearing loss and for speech problems, but those didn’t materialize for us. I do think people need to be prepared for that possibility, though.
My DD’s biggest day-to-day issues are not cleft-related per se. She has PTSD, probably both from the trauma of leaving her foster family and from her first surgery. From what I understand, she was put on a train for 24 hours with her foster mother (of only once week at that point). She went halfway across the country, had her surgery, and then was in the hospital for over a week. It’s likely her foster mother was unable to stay the night with her in the hospital, and also likely she wasn’t given pain medication during her hopsital stay. We are now in weekly therapy with a child psychologist who specializes in trauma issues in order to get to the root of what’s bothering my little one.
March 14th, 2011 at 1:29 pm
We brought our son home from a central asian country, Kryg (not China), in June of 2008. He was untouched with what is labeled a third degree unilateral cleft lip and palate. The cleft was open all the way through the bone ridge to the back of his throat and he was missing one tooth in the front. I was told he was a year younger than his actual age of 22 months. Paperwork verified that bit of information. He weighed 16 pounds with molars and suffered from severe giardia and rickets. He was not walking or talking and barely connecting with those around him. Our first pediatrician gave us very negative feedback about our son and soon we found an international adoption physician that understood our son’s delays and addressed them quickly.
Fast forward a year and he is running and talking with his lip and cleft palate repaired. It took 5 rounds of antibiotics to eradicate the giardia and he was treated for H Pylori bacteria that causes ulcers. He needed to be circumcised for medical reasons (pee’d to the right) but otherwise is physically fit. He struggled with diahrrea for a year before all bad bacteria was gone and he was diagnosed as lactose intolerant. He had new found energy when we removed the dairy from his diet. He finally gained weight and I still laugh remembering the day the GI specialist started in on her talk about childhood obesity, as our son had picked up a few extra pounds. He is now on the growth chart at 3% and we are thrilled that he will likely reach 5′ 7″.
Of course the surgery changed him forever and seeing my son wrap his lips around a sippy cup for the first time in his life was incredible. He still has a small fistula in the palate that needs repair as well as needing the bone ridge repair. He is now 4 1/2 and has had three surgeries (lip, palate, p-flap) and is about to receive his 4th set of ear tubes. Another surgery to adjust the p-flap is likely, as well the bone ridge surgery and cosmetic surgery when he’s older. That missing tooth has appeared inside the fistula and is to be extracted soon.
Our son blossomed with nurturing and nutrition and is a very happy sweet child whose biggest issue now is articulation. He completes 100 piece puzzles with ease and is learning his kindergarten sister’s site words. He attends 5 speech therapy sessions a week and preschool three times a week. While surgeries are difficult to endure, for me as well as my child, the trauma is short lived with stellar results. The hardest part is all the speech therapies and wanting for my child to be understood. He has so much to share and is such a delight. We are over the moon happy with him in our lives and would do it all over again in a heartbeat. :) I would not hesitate to adopt another cleft child today.
All the Best on your Journey of Love
March 14th, 2011 at 1:54 pm
Our daughter, Caitlin, was almost 20 months old when we met her in October of last year. She had a repaired CL and an unrepaired CP. Honestly, I had read everything I could get my hands on about cleft issues so I felt completely prepared for any challenges that arose; to me the adjustment issues were far worse, even though I’d read plenty about those as well.
In her orphanage Caitlin had only eaten formula, congee and broth, so she was never even exposed to solid foods until we met her. I wasn’t prepared for her to still be drinking from a bottle; I’d brought mostly sippy cups with us and only one bottle, but Caitlin was not able to suck at all so the sippy cups weren’t any good. I had to cut the tip off of the one bottle we had, and she actually drank out of bottles until a month or so after the surgery to repair her palate, when she could finally learn to suck. She is now drinking out of sippy cups, but cannot begin to drink out of a regular cup.
Caitlin had surgery to repair her hard and soft palate after being home for only one month. We didn’t want to do it so soon, but since we were moving long-distance in March (next week!), they wanted to get started ASAP. The surgery itself wasn’t that bad; the 3-week recovery was far worse! They tried to build her a uvula, but it didn’t take; however, her doctor said that the uvula is far less important in the grand scheme of things than the muscles that he also had to build, and they appear to be working fine.
She also got tubes in her ears during her cleft surgery, but she is still having trouble with her right ear so we are working on trying to get to the bottom of that. She also has digestive issues, which they can’t seem to figure out. Those have been more of a problem so far than anything related to her cleft.
Caitlin has speech issues and will be starting speech therapy as soon as we get settled in our new home. She thinks she’s talking, but most of the words she says are incomprehensible to anyone but us. There are many sounds that she just can’t make, so she says things like “nya nya,” which means “thank you.” She also signs a lot. She may have to have surgery in the future to help with her speech, but we’ll wait to see how the speech therapy goes.
She will need more surgery next year, but it will just be cosmetic. Her plastic surgeon is not happy with the way her lip healed; he said it was probably a good repair, but it might have gotten infected after the surgery and healed wrong. He wants to try to “clean up” the scar, and work on her nose a little, which is still a little collapsed on the side of the cleft. He wants to do it before she starts preschool because he said that kids do not notice differences before the age of 3, but we do not want her to have to deal with kids making fun of her or giving her a hard time. She is absolutely beautiful the way she is, but unfortunately kids can be cruel…
I blogged all about our experiences, including our trip to China and the surgery, and I didn’t sugar coat anything. If you really want to know the truth, the whole truth, and nothing but the truth (the good, the bad and the ugly), please click on my name above and it will take you to our blog. We traveled to China in October of 2010; her surgery was on November 30th (there are links to the various months on the right-hand side so you don’t have to scroll through months of posts to get there!) I am also more than happy to talk to anyone and answer any questions I can about our experience. Please contact me by leaving a comment on my blog with your e-mail address and I’ll e-mail you back!
March 14th, 2011 at 1:58 pm
My experience with our ds has been very positive, and has been for others who adopted a child with the same Sn’s.
I realize that no two children will ever be similar in all ways, and everyone will experience different things depending on personalities, resources, support etc.
We adopted him at 4 1/2 years old. He received excellent care in China and he had his repairs done in China.
On arriving in the US, we had his hearing tested and evaluated by our cl/cp team. He had a lot of fluid build up, and had his first tubes inserted. This to us was no big deal as many children with continual ear infections have this procedure done.
His hearing was retested and had improved dramatically. He had his tubes replaced again a few years ago. He just recently had another hearing test and it was 100%.
He had corrective cosmetic surgery on his nose and lip.
He has had pharyngeal flap surgery.
Speech therapy.
Regular dental checkups with Pediatric Dentist, Orthodontist and one specializing in cranial facial dentistry.
He may or may not need to have a bone graft. The team want to see him in 24 months. He is now 9 years old.
However, his actual age is in dispute. It is believed he is probably a year younger. The team said that treatment with regards to bone grafts are being modified and re-evaluated, and techniques vary along with opinions.
His speech has improved 100%. We work with him every night as well.
He is well adjusted, smart, loving, attached, caring and a lot of fun. For our family, his need is not special, and very manageable. My friend has a NSN’s dd, and her needs are more severe, they are not physical, but emotional.
We were very fortunate that our ds was well taken care of by his SWI, which was run by a western organization, and that his surgeries were excellent. We have photographs of his surgeries that were taken. We also had a lot more information about him that usual, various updates and reports from staff and volunteers. Loads of pictures and medical reports.
March 14th, 2011 at 2:33 pm
We came home with DD when she was 2. She is 4 now. She had her lip repaired at about 7 months, and her palate was unrepaired. She was in foster care from the time of her repair until we got her, and was a well-fed, developmentally on track little girl. Her only delay was cleft -related. First, she had no suck whatsoever. She couldn’t use a bottle or sippy at all. Apparently her foster mom had fed her liquids with a spoon. This was quite tedious for us, but since we had to feed her those first few weeks, it was really good for bonding. Within about 2 weeks she was using an open cup and gave up the spoon. Solid foods were never a problem. She ate almost everything we served her. She was probably 3 1/2 before she was able to consistently use a straw. This was after weekly speech therapy since she got home.
We had her palate repaired after being home 3 months. I was under the illusion that this would immediately fix her speech. No one told me this. I was just delusional. Or hopeful. You choose. When we brought her home, she had only a handful of recognizable Chinese (according to our guide), including mama and “that’s enough”, which she told us a lot. The only consonants we heard were W & H. We started speech immediately through the early intervention program which was wonderful. We also started Signing Time videos which was incredibly helpful and good for attachment because we could meet her needs better when we communicated. As her speech improved, we dropped the signs, although she still uses them occassionally.
Her speech is now probably 80% recognizable to most people. She works hard at it, but it is always a struggle. Her gumline will need to be repaired when she is about 7, and she will need some dental implants since she is missing a tooth. And lots of orthodontia. Thankfully our state has a program that funds cleft procedures, as long as we use their drs. Our surgeon – who did a brilliant job – says that if she wants a nose/lip revision when she is about 17 he will do it, but it is up to her. We are fine with that. Her repair looks good right now.
Even though the speech was a lot harder than I expected, I would do it again. In fact, we are hoping to adopt another cleft child in the next year!
I am on the forum, so if anyone has questions, feel free to pm me!
March 14th, 2011 at 2:34 pm
Our son was born with a unilateral cleft lip and palate. His lip was repaired in China when he was six months old, we brought him home at 20 months old, and had the palate repair surgery two months later. He’ll be three years old next month. So far everything with his cleft has gone very well. The lip repair is excellent – one nostril is a little flattened, but open, so it’s pretty much just a cosmetic issue. We lucked out with the palate repair too – it was a pretty wide cleft, but after just the one surgery it seems to be holding fine, with no fistulas, no food out the nose, and no nasal sounding speech. We spent one night in the hospital post-surgery, and kept him on soft foods for about 2-3 weeks. Lots of sleep disturbances for 2-3 weeks too. His hearing seems to be fine, although he did get ear tubes.
As for dealing with emotional and developmental issues, it’s been a mixed bag. Overall I think we had an easier than average transition. From very early on he was making eye contact with my husband and I, and showing a preference for us without being overly clingy. He was in a Half the Sky program and was definitely attached to his nanny, so I think that helped with his attachment to us. The biggest challenge the first several weeks home was sleep – not going to sleep without a major meltdown no matter what we tried, waking or having night terrors multiple times a night. It got better, but we still have resurgences whenever he’s sick/teething, or if there’s some other change or stress. We’ve also had ongoing problems with self-feeding – he frequently goes through phases where he’ll refuse to hold a cup or spoon himself, and sometimes refuses to even put finger food in his mouth himself.
He came to us with significant developmental delays. He could walk with support when we got him, but it took 4 months after that for him to start walking independently, and a year later his gross motor skills are still a little bit behind his peers. He didn’t seem to have much receptive language when we got him either – I got the impression from the orphanage staff that they thought since he couldn’t speak, he couldn’t understand, so why try working on his language development? He’s got a vocabulary of at least 100+ words now, mostly only intelligible to those used to deciphering toddler-speak, and isn’t yet speaking in sentences. He’s receiving Early Intervention services in addition to seeing the cleft team.
Overall, he’s a sweet, happy little boy, and in spite of the essay above I just wrote, I don’t feel like we’re dealing with anything much beyond normal toddler difficulties. My husband and I both work full time and our son attends a regular daycare. We have great insurance coverage and work/home/daycare/doctors are all within a few miles of each other, so dealing with his need hasn’t put a huge strain on our finances or time. We’re close to being DTC for a second child (our son is our first child), and cleft lip/palate is still on the list of needs we’re open to!
March 14th, 2011 at 2:35 pm
I forgot to add that when we came home she also had moderate hearing loss. Tubes improved that dramatically. She has had 3 sets now. At the moment, her hearing isn’t good because her ears are full of wax. Hopefully she won’t need more tubes, but that is always a possibility.
March 14th, 2011 at 2:43 pm
We adopted our son at the age of 17 months. He had a repaired CL/CP level III. He was in a wonderful program from the age of 3 months. His lip was repaired at the age of 4 months and his palate at the age of 12 months. He is now 4 years old. Since he has been home he has been followed by a Cleft Team with yearly appointments. His surgery in China was done very well. He has no hearing or speech issues and will not require any surgery until he is older.
March 14th, 2011 at 3:58 pm
We adopted our daughter in 2006, at 21 months old. She had unilateral cleft lip and palate (China graded hers a III), which has proven to be a complicated case.
Her lip was repaired in China, her palate was repaired in the US. Her teeth are also affected, and she has a mouth full of fillings and a giant fear of dentists. She has had three sets of ear tubes since we brought her home, and she is prone to hearing loss if a tube comes out. She fails the school hearing tests every single time due to some minor hearing loss. She has speech therapy through school, but it has been recommended that we look into additional private speech services.
I am a bit down today, she had her appointment with the cleft team this morning and needs 3 surgeries within the next few months – dental surgery, and a two stage repair of the palate’s original repair. After those are completed, she will need a revision of her lip repair to loosen the scar tissue, and surgery to repair her nostril because she currently can’t breathe through it. After that comes the gumline repair and the orthodontia, etc. Thank goodness for health insurance!
We have also dealt with food issues from her orphanage days, and the restricted diets after palate surgery brings those back with a vengeance. (She will have a restricted diet for at least 6 weeks after each of the palate surgeries this summer).
Would I adopt another child who is cleft-affected? yes!
My username on the forums is Monie as well, I would be more than happy to answer any questions you might have.
March 14th, 2011 at 5:13 pm
We adopted our daughter at 22 months in January, 2008, with an unrepaired unilateral incomplete cleft lip and a cleft gumline. Technically, a cleft in the gumline is a cleft of the primary palate, so in her medical reports she was described as CL/P. We had no idea of the degree of her cleft palate until we got to China; we were told to expect a complete cleft of her palate. That is the more typical scenario. We were surprised to find that her secondary palate (soft palate) was completey intact. Since only her gumline is affected, she does not have many of the medical concerns that kids with cleft palate experience. She has had one surgery and will have one or two more when she is older, to fix her gumline (bone graft) and open up her left nostril. She will need orthodontia (which she would have needed anyway–she has very crowded teeth which may or may not be related to her cleft). She has had no middle ear problems, no feeding problems, and no speech/language issues. By far our biggest challenges have been with her attachment. She was in a very “marginal” orphanage (no toys, very few adults, poor nutrition). She had done very well despite her early experiences, but she is still somewhat anxiously attached. I have a Ph.D. in speech pathology/audiology with a focus in childhood hearing loss/deafness; I am now working with an adopted cleft-affected little girl with RAD (this is the second child I’ve worked with in therapy who has a diagnosis of RAD). I’m happy to answer any clinical questions about cleft (same name here as on the forum). We are in the process of adopting a second child from China who has a bilateral profound hearing loss, so I’ll post on that when the time comes. He just turned 15 months old and we should travel in September to meet him!
March 14th, 2011 at 7:27 pm
I decided to do this sort of like a FAQ for cleft lip palate.
What kind of cleft does your child have, how old is he now, and how old was he when was adopted?
DS2 has a unilateral cl/p complete on left side. He is now 4 and a half, and was adopted at 22 months.
What surgeries did he have and how were they?
DS2 had an initial lip and palate surgery in China, 2 Ear tube surgeries and one major cleft surgery with tubes and nose revision here in US. The cleft surgery recently was difficult and painful but we got through it. We think it was as successful as it could be. The repair from China had completely opened up in the palate.
What issues does he have that are the result of the cleft?
DS2 has speech delays. He receives speech 2x a week through local services and 1x a week privately. Private speech is essential, in my opinion because it seems to strive more for perfection where as the county strives for functionality. DS2 when he was first seen by an ENT in the US had fluid in his ears. The doctor said he basically could not hear for the first 22 months of his life. This can happen with children with cleft and can have profound implications. They will revisit more palate reconstruction when he has a bone graft at about age 7. We believe that the surgeries are traumatic.
How did you pick your doctor?
For us it was easy, we are located about 40 minutes from the one of the best children’s hospitals in my country. We posted on adoptcleft@yahoo.com for recommendations for doctors and they all came back with the same name. Turns out he’s Chinese, so it’s really great. I cannot stress how important it is to know if you can access really really good specialists within a relatively sane travel distance. You will be spending time at these places.
Any attachment issues and sensory issues?
Yes, our son has attachment and sensory issues. He lived through Sichuan earthquake which was quite severe. We believe that this trauma on top of the surgeries and abandonement/adoption has caused him to have problems. He is very very hyper and is quite aggressive. When he first came, he really hit us a lot. It was pretty brutal. I had to do lots of safe holds.
What kind of services does he receive?
DS2 gets a lot of services and it’s an ordeal to get them. This may not be a question on your list, but it needs to be. Apply right away with your local county. DS2 qualifies for Medicaid in our state based soley on his cleft with no regard to financial situation. He receives speech 2x a week, has wrap around services for aggression, safety, and ADHD behaviors at home and at school (he’s hit other children), and he will receive trauma based therapy soon. HE receives speech 1x a week privately which is paid for by Medicaid. He is going to be in line to get an eval by a developmental pediatrician at his hospital and will probably see someone before Kindergarten. Yes, it takes that long to get into a development pediatrician at our hospital. There are others, but with his physical history we want to stick with where his records are.
What has helped your child the most?
S.P.E.E.C.H. The more he talks, the more the inappropriate and aggressive behaviors decrease. County based sensory services have not had that much of an impact. This kind of fits with institutionalized kids. They know how to survive. If they think something might calm them, they may like to it because frankly being calm did not help the survive. Our son is a survivor and will do whatever he can to keep and maintain our attention. It’s critical to his security. Yeah, I probably have some scars from this kid, but I love him to pieces and he’s come a long long way due to all the support that we have.
I cannot stress this enough: The cleft lip/palate is not the most difficult problem he has faced. His behavioral issues are far more difficult to manage but they may be rooted partially in the trauma of being born with a birth defect, the subsequent difficulty eating early in life and the surgeries. For us, you truly cannot separate the need from the attachment and trauma issues. It’s all one big package.
PS. He has GI issues to that were undiagnosed.
March 14th, 2011 at 7:35 pm
Congrats RQ on being named one of the 20 best blogs!
March 14th, 2011 at 7:51 pm
I adopted my son over 5 years ago when he was 6 days past his first birthday. He had a repaired cleft lip and an alveolar cleft. Presently there is a crooked tooth that is filling the gap. One nostril is a bit flatter otherwise it was a great repair. He had tubes in at 18 months and no problems since. He has been receiving speech intermittently. He is about 80% clear now. He should be getting a bone graft and othodontia when he is about 9. Like the other mom of a child with a gumline cleft, I have trouble getting regular appts at our cleft clinic. He will be in the different age group this fall that focuses more on dental/plastics etc which is where the big role with him will be.
My son was a beautiful healthy, chubby baby. My daughter was adopted at 24 months weighing not quite 20lbs, so I was a bit taken aback by this cute chubby little guy who weighed in at 22 lbs. No real delays.
The biggest problem with my son has been his teeth. He has had massive dental work on top of routine care. Pediatric dentists need to be paid up front so it is easier to keep track. At 3.5 over 2 different procedures, he had 13 fillings and 3 crowns. 2 months ago, he had an emergency rootcanal and a filling and 2 weeks later under anesthesia, he had 2 other crowns and multiple fillings. Out of pocket over $4000, but my insurance reimbursed me for most. I hope that his permanent teeth are in better shape.
Would I adopt another child with cleft? Probably.
March 14th, 2011 at 9:15 pm
Was Rumor Queen on the 20 best blogs? I didn’t see her on the list and I looked. There was a similar title: chinaadoptiontalk.blogspot.com ….but that’s not this one. I think RQ deserved to be listed and maybe I missed it but I didn’t see her site.
March 14th, 2011 at 10:03 pm
We brought our daughter home 6 months ago. She was 2 1/2 at the time of adoption. She has a bilateral CL/CP, with the lip repaired at about 14 months. She also has microtia of one ear/hearing loss. She had her palate repaired 3 weeks ago. It was rough at first, but she’s doing fine, now, and it seems to be healing well. Her teeth are a mess, full of cavities, and she’s missing her top 4 teeth because of the cleft. She faces more surgeries and lots of orthodontia work(as others have pretty well covered)
We knew that the likelihood of some sort of syndrome was greater with our daughter because of her ear and cleft, and there definitely seems to be more going on, although she doesn’t fit into any syndromes that our geneticist is familiar with. They are running some tests. We had researched several, though, just in case, and were prepared for that. We were also prepared for her hearing to be worse off than reported. We still don’t know her hearing status, although tests run to this point indicate she has normal hearing in one ear. We were surprised, because she didn’t respond to sound at all for the first couple of months home. She is very, very delayed (tested between 1-10 months in varying areas). In fact, while in China our guides and the doctors expressed concern about her, and asked over and over if we were sure we were OK with this child. She has severe sensory issues (which affects her ability to walk(she doesn’t yet, although we’re getting closer) and her eating). She too had only been bottle fed, and although we’ve gotten up to baby foods on a spoon, that is all she will tolerate (which works great for post-op diet…)
We weren’t prepared for all of the delays, and it has truly changed our family. Trying to find services for her, and all of the appointments just to get started was crazy. We’re still working on it. All of the issues with attachment and communication we thought we’d be dealing with have not yet surfaced. It’s like having a very tall baby (who can pull dishes out of the sink and drop them on the floor, but doesn’t yet understand “no”). We are still not sure what the future holds for her, or for our family. Issues like child care are difficult now (people are uncomfortable watching her, because of her delays) and we wonder if we will ever get to the point where she won’t need 24 hour surveillance and constant care. Our other children have adapted well to less parent time, but it has been a stress to all. Those are the negatives.
The positives are that she is a sweetheart, and she has made many improvements since we’ve been home. She seemed completely oblivious of her surroundings for a long time, but now she reacts to us, and with us. She’ll laugh when her sister crawls after her, and she reaches up to be picked up. She turns when she hears us talking, and has learned to clap her hands. (We’ve been working on signing with her, and this is the first imitation she has been able to do). After her surgery, she even began crying when her sister sits on my lap, and trying to push her off. We celebrate each little milestone.
We know our experiences have a lot more going on than just CL/CP, but I thought we’d share them so you know sometimes it happens. We are very very glad she’s in our family. And we don’t know how things are going to turn out. I don’t believe the developmentalist’s analysis that she does not seem to have the capacity to learn, because she does seem to be learning and growing. We just need to learn to accept her growth on her terms, and not our previous expectations and dreams.
Oh, on the forum my name is justme. And yes, we’d adopt a CL/CP child again.
March 15th, 2011 at 12:52 am
We adopted our son at 35 months and he had cleft lip repaired and cleft palate unrepaired. They had him at grade 3, then in China changed it to grade 2. We had done enough research to know that we wouldn’t get a clear picture until we saw our cleft team/ plastic surgeon.
He was in foster care since 3 months old. We researched and understood that adopting an “older” cleft child would have it’s challenges. We requested an updated file and it seemd everything was developmentally on target except for speech. Turns out the file was correct– he is almost 4 years and his only delay is speech. He is a typically developing clever, funny, sweet, determined little boy!
In the past (almost) year, he has had major dental surgery and a palate repair. The dental surgery was unexpected and cost more than the palate repair! I doubt his teeth were ever brushed coupled w/ cleft issues. The post op of the palate repair is tough– but after 3 weeks, life resumed it’s normal routine. However, there were no complications after the repair. He also needed tubes and had mild hearing loss in one ear. Since the tubes were put in, he tested in the normal range for hearing.
So, in the first year home we have seen: dentist, ENT, cleft team, speech therapist and a dermatologist (bad ezema).
In the next 2 years we will be considering P-flap or Z plasty and a lip/nose revision. No doubt more dental work is in the future, specifically orthodonia. There are other sugeries along the way including a bone graft when he is older.
Our biggest issue has been speech. Our son is 95% unintelligable. He receives private speech 3 times a week for 45 minutes and speech from the school district 2 times a week for 30 minutes. The private speech is costing us a fortune and there is a commute, (I have to go after work, late afternoons in traffic), but this is all necessary. The school SLP does not have CL/CP experience whereas the private one does– and she is so good. We also have daily speech homework… and the progress is slow. I have to keep my nose to the ground to not get frustrated.
He is in preschool now and the kids do ask questions about why he talks funny. Fortunately, the teacher handled this well, but I imagine his will be an on-going issue for quite some time. Our home elementary school is not good, so to receive school services we would have to send him there. That’s another hurdle we have to figure out in the future.
I was really glad I had read an article about how it sometimes takes longer to bond with cleft kids because of communication. Of course, this is not true for all, but it was for me. At times he was frustrated (even w/signing) and at times I have felt disconnected to him. Over time, this has improved a lot. I would say I’m 90% there.
We have had no attachment or sensory issues. He velcroed to dad right away, then to me later. He adores his sister and their relationship is truly a special one. I can now say our family is complete.
Feel free to PM me w/ any questions.
March 15th, 2011 at 1:33 am
We were in the long line for NSN with a log in of April 06. We were open to special needs but not so much CL/CP. But our agency called with a little girl with CL/CP and we just could not say no. We did our research and expected the worst. We found out a month later that her lip had been repaired. We went in September 09 to get her and she was 15 months. She was slightly behind developmentally, and was on a soft food diet, and a bottle, but she did not let it slow her down. She quickly learned basic sign language and was able to communicate very well with us. We were able to get her accepted at the Shriners in Houston and her palate was repaired in August. Again we were prepared for the worst but it went really well. The surgeon was very pleased with the lip repair, and for the palate she was on a soft foods diet so no changes and she did not complain about the arm restraints.
Her language has picked up since surgery but she is still behind for her age. But she is very smart so the doctor suggested we wait for speech therapy until next year. Most people who spend time with her are able to quickly understand her. She has a few consonants she cant say yet. She talks all the time, so i am thinking she will catch up soon.
She eats anything and everything, but still will only use a soft sippy cup, and won’t use a straw.
We anticipate other surgeries when she is 8 to repair gum line and as a teen for possible lip/nose revision. But we visit the team each summer to evaluate everything. Her teeth on top are a mess, so I know braces are in our future.
I am not trying to sugar coat any of this, hers is really a minor special need. I have three biological children and had to do braces for all three and speech therapy for a year for one, so her issues seem normal.
She attached very well, and very quick. She attends preschool where i teach and is right on track with others in her class.
Now….if I could just get her to sleep at night by herself….
March 15th, 2011 at 2:12 am
Ian came home at the age of 3. He was labelled bilateral cleft lip and palate. He had had cleft surgery at 3 months and palate repair a year later. He had been with an extraordinary loving foster family in a small village in northern China.
The surgeries were as good as would have been done in Canada according to doctors here, but the front of his palate where his front teeth roots are, is put together differently than is normally done here. What that means is that the grafting process when he is older will be more complicated.He only has one tooth bud out of four for a permanent tooth and it looks deformed. I mention all this because the dental repercussions are pretty serious and I will need my good dental coverage for as long as I work and probably have to set aside savings (I’m 55). That’s the biggest challenge.
The plastic surgery to repair the scar on the lip and make his nose a bit bigger should happen when he’s 8 or 9 and should be very straight forward.
Ian is very bright and perceptive – he can read and work a room of strangers like noone else that I know. He is full of stories and ideas and loves to share them. That’s why I put him into bi-monthly private speech therapy immediately and for the last year and a half he has had an aid work with him 30 minutes a day, five days per week on his consonant sounds.
It’s been just the last couple of months that we’ve been able to have the wonderful conversations with each other that parents of kids who can communicate easily often take for granted.
It’s been a gift. I believe he will still have challenges in kindergarten, but we’ll start doing music theater because he has fewer problems when he sings. Speech support has been expensive but the best thing I ever did – it reduced so much frustration and gave us special opportunities to bond (nonsense rhymes and all).
Ian is my only child – I can’t believe the love that we share. It has changed me completely as a person, and watching him grow and flourish is my greatest joy. For us, the cleft is more an interesting science fact than anything else.
He is a courageous little boy – he’s had to be – and he will need more courage as he grows up, both to deal with the differences of his race and facial features as well as the physical pain he will go through with the future surgeries and orthodontal treatments.
I’ve had to advocate with the school district to get him services, but eventually it worked. Sometimes that’s the exhausting part – making sure people in authority know that he’s not just a cute kid who talks funny, but a bright little boy who deserves the support so that he can communicate fully and articulately.
There are so many things to say. Feel free to contact me if you have any questions – I promise ‘full disclosure’. Sylvia
March 15th, 2011 at 9:08 am
How wonderful to be able to read about other peoples experiences…we adopted our little Lexi when she was 10 months old. We were blessed that she was in a very good orphanage and seemed to receive excellent care. When we saw her referral photo we were slightly scared, her cleft was unilateral complete 3rd and it was HUGE. Both her soft and hard palate were wide open, I had not seen anything like it. But there was something in her eyes and her plump cheeks that made us say yes to the referral, I thank my lucky stars everyday that we did. At seven months she had her lip repaired in China. All things considered they did a fairly good job, when we saw her updated photos we could not believe the difference.
When Lexi was put into my arms on that special day it was as if she had always been there. She attached to me very quickly and was such a HAPPY and sweet child. We could see that she had been loved and well taken care of, she was plump and drank from a bottle very well. We started feeding her tiny finger food, watermelon, cheerios, etc.
When we arrived home we scheduled her palate surgery and brought her in for an evaluation within the first week. She will have a revision on her lip and nose, which is slightly flattened, when she is about to start kindergarten and all kinds of dental work. I have to say the palate surgery was hard but after three weeks she was able to start eating soft foods again and you forget about the horrors of pain, no sleep, and just shear anxiety. We have a six year old from China and she and her sister are inseparable.
Lexi had no issues with attachment, no issues with socialization, no issues with food, really no issues with anything except speech.
She is now two and is delayed in speech, but she is making progress, slowly but she is making progress. We have speech once a week for an hour and I can see that day by day she learning how to say a few words, I was not prepared for how difficult the speech aspect would be. At two we are not too concerned right now, Lexi can communicate extremely well however and has no problem being understood.
We are amazed by her on a daily basis, she is such a joy and delight. People think she is older because her social skills are very advanced. She loves to play with children and is very comfortable around strangers, just as long as she can look over and see her mom :)
We thought long and hard about SN, we had a LID of 4/07 and with our other daughter getting older, us as well, we changed to SN and waited another year for Lexi.
I would not change a thing, she is such a gift to our family and I have to say that her CL/CP has really been no issue at all for our family. She is a gift of light and laughter to us and we are grateful everyday that she was brought into our lives.
If we were younger we would not hesitate to adopt another CL/CP child.
March 15th, 2011 at 9:11 am
I don’t have a cleft child, but wanted to say that this has been VERY educational. I had always thought of CL/CP as a very minor special need, and I have learned from reading the above comments that it is far from minor. For my last adoption in 2006, I had listed CL/CP as a special need I would be willing to consider. As a single parent who works full time and has two other children, I realize now that this would have been a very difficult condition for me to handle by myself.
March 15th, 2011 at 7:26 pm
I’m not sure if anyone has mentioned this, as I haven’t read through all the post thoroughly, but kids with cleft are at greater risk for reading delays and learning disabilities than children who are not cleft-affected. Our IA pediatrician talked to us about this when we accepted our referral and I did a lot of research on my own. There was a paper published recently by some doctors on our cleft team on this topic. Not all kids with CL/P will have these delays, of course, but the research shows there is a greater risk. I’m happy to share the articles I have if people are interested. I also have some good speech therapy resources.
March 15th, 2011 at 7:45 pm
We adopted a 23 month girl with CL/CP in 2009. Her lip was repaired in Shaanxi province, and the doctors fortunately did a very good job. We live about 2 hours from Duke Medical Center in Durham, NC. They have a whole team of specialists dedicated to cleft issues, and the experience has been great with them. One special note – when we first came home, we were experiencing some attachment issues. However, the trauma of the surgury and us being there to care, encourage and sooth her proved to be a turning point for attachment. I don’t know if other people have had that experience.
March 16th, 2011 at 10:13 am
I want to say a HUGE thank you to the families here who have talked about their experiences. The level of detail you have provided has been beyond helpful.
And thanks to RQ as well for doing this series. It’s amazing.
March 16th, 2011 at 10:26 am
Working in the plastic surgery department with a craniofacial team at a major Children’s Hospital, we see 10-20 cleft kids a week. There are no two alike, no two require the same treatment. There is no easy fix, and all will require long term follow up as the child grows and the mouth changes. Before adopting, I highly recommend looking into craniofacial teams, and ones that have experience with international adoptees/have an adoption clinic that the child can be seen in as well.
March 16th, 2011 at 4:57 pm
As a parent-in-process of a child with cl/cp, I want to let you know that your comments have been tremendously helpful. Our son is 21 months and presently in a foster home. He had his bilateral cl repaired at 6 months and his cp repaired at 11 months. We think we’re lucky that he has had his surgeries at such a young age, but know that revisions and speech issues are still to be expected. Your posts confirm this to be so.
This is a valuable thread to me. Kudos to RQ for focusing on cl/cp and other sns. Most importantly, many thanks to you all for telling us about your experiences.
March 17th, 2011 at 6:42 am
Hello, very interesting to me all you are doing here, talking about NE by families who already have children of NE our home and waiting for them. I am a mom of Spain and want to tell my experience, if it can be useful to someone read to me.
Fuímosa for my son to Guangxi, in May 2009. Had cleft lip and palate surgery in March 2009, was recently operated, which involved all at once. When we turned him over, he was very agile, crawling very well, did not walk but he stood with great ease and righteousness, and was physically very strong and in good condition, but sentimentally and emotionally and stimulation, my son became very ill . I did not know to look into his eyes and looked away in his own world. Never suspected in China, which then found. He was happy, very moved, but also had a strong character.
Already found their great NE Spain, the profoundly deaf. My child has profound hearing loss, we had to fix in our country, it has operated here a year ago in February 2010, and has been wearing a cochlear implant and is hearing ELQ eu. It was very hard because only a few months had passed since his last operation in China, about which know all, did not tell us anything, just told us that he cried a lot. My son was 48 hours clinging to me in Spanish hospital that was implanted ear, full of fear and stress-night crisis. It was very sad to see him so scared, luckily we were at her side to cuddle and tranquilzer. Then there was a terrible fear of doctors. This has already been surpassed because it is calm and confident to multiple medical visits, not mourn, or scared, our hands and abrazadito me.
Learning process is more complicated than I imagined when I decided to adopt a child with NE, especially at first, I thought it would not be able to raise this child, but as time passed, almost two years and see how it progresses and learns and evolves is very exciting, I’m very hopeful and I do live with hope and think that my son is a normal man and greatest.
He goes to speech therapy 4 times a week, you need to your ear and auditory learning and speech. At the moment, does not say much … “mama” “pa” “ta” “a”, it screams own 1 year, which is what has been in place, but experts say they are learning a lot of good, say that is intelligent and interested in learning.
He, when we adopted him, I just took bottles with cereal, but soon began to eat solid foods, chews nicely now and no longer will get nothing from the nose, eats everything. And does not drool at all, at first, always drooling.
My child came with many tics that have been removed gradually moved a lot of hands, was the whole day lying on the floor face down, no walking, put on his eyes, and was isolated in the deaf world.
We were very sad and worried and I had to do all sorts of medical tests, CT, MRI, blood tests, psychological testing and psychiatric, neurological, because we thought we could have autism. Thank God they all came back negative and we have seen how my son has evolved in less than two years, almost, to achieve the skills appropriate to their age. This year has gone to kindergarten and in September this year will go to school in three years, almost standard and knowledge of their age. Go to a specialist school integration, but in children with hearing aids and implants, there will be treated by specialists in the ear. We were lucky that our city has a specific school for him. His progress has been a miracle for us.
Three maxcilofaciales we’ve been told that we are very well-run, the soft palate has good mobility and now we have to wait to make it inferto gum at age 9, and the operation of the nose that has a fall short of a party, with 14 or 15 years. You have to watch the teeth that is fairly well placed in the mouth. He has not suffered from ear infections, or has drainage pipes needed to be put to these children with this malformation.
His big problem is listening and hope to talk sometime and can develop normally.
Another problem with my son is very attached to you father, as someone said a child “velcro”, when you always want to go with him in his arms and clutched tightly to his neck. The nights have been very difficult until recently that they will be better. We have spent many sleepless nights with him in her arms, sometimes crying with nightmares and other hustlers wanting to play in the morning … It has been difficult, but this also is surpassing.
With food no problems, it eats everything, chew well, test well and swallows everything. This has been a blessing to eat this well.
Moreover, a child with great character, very strong, happy, intelligent, loving, independent, sometimes, very brave, but with little need for his family. We all loved, sister, parents, grandparents, uncles … everyone. We want very much. Infinity has changed since we met with him. It is now safe with Dad and Mom, it feels good, loved and cared for.
Despite the efforts and fears that we have spent and spent, if he were to adopt a child, would do with this special need.
Greetings from Spain. Sorry for my English … I studied French and now I’m trying to learn this new language to me.
I hope my experience will serve future families of NE.
Pilar, Hong mom
March 17th, 2011 at 11:42 am
We adopted our DD in 2009. She was 15 months old with a unilateral repaired cleft lip and unrepaired cleft gumline. Her repair in China was excellent and we have had no surgeries to date. She will require a lip revision at some point in the future and a bone graft to her gumline sometime between 7-9. She will also need all the orthodontic work that goes with that.
She has required one set of ear tubes. Her speech is fairly clear and to date has not needed any type of speech therapy. We are getting ready to have her articulation tested as she has a very few sounds that are a little nasal. This is the only concern anyone has had with her speech.
Honestly, so far her SN is not even a need.
March 17th, 2011 at 11:23 pm
The one piece of advice I received about my son’s surgery was wear something old and expect a lot of blood. I am so glad I got that advice, because Jake swallowed a lot of it, and I’m sure I would have freaked out when he finally threw it all up if I hadn’t been expecting it. Boy did that make him feel immediately better. His lip was repaired in China and he had palate surgery at 28 months. It took, and he had not had surgery since, but he will have them in the future. We are not all that confident in our doctor, but based on what others said here I see we are on the same path (even though it seems to change every time we have an appt.) One thing I wonder. His doctor says to revise his upper lip he will have to have his lips sewn shut for weeks and drink and eat through a straw to get skin from the lower lip or the revision?!? I have to admit I’m kind of blocking this out because I cannot imagine! Anyone else have experience with this? I would appreciate the feedback. Oh, and I agree with comments that private therapy seems to be best for Jake, although the school’s therapist does well, also. Our private pay is $45 (has gone up to $52 for some who don’t have a wonderful payment history and I’m assuming it eventually will go up.) It definitely has been worth it.
Violet
March 18th, 2011 at 8:18 am
@piper
I think that you should post your question to the adoptcleft@yahoo group. Inever heard of the lip sewing procedure, but it might need to be done. I would seek out a second opinion if you have concerns, if anything it might boost your confidence in your current doctor’s treatment plan for your child. Second opinions help even if they just simply confirm what the first opinion says.
I guess I’m lucky, I have confidence in my son’s doctor. He always has an entourage of students with him, comes highly recommended by other people and also staff who work in his hospital, and he’s nice. That said, I’ll jump ship fast if I thought he was getting shoddy. Maybe it’s best to say that I am cautiously confident.
I don’t think that I could have endured the surgery this past November if I didn’t feel confident in his practices. When my son rolled down that hallway, I knew in my heart that he was in the best of hands. It’s really really hard to let go of your child for these surgeries so I think it’s really important that you have the right team. If I had doubts, I think that I would have completely flippped out, even if it was unwarranted. There’s a risk with every procedure and our son’s first palate surgery was only partially successful here in the US. But I know that they did the best.
I just teared up writing that. Probably TMI for everyone, but please know that there is a significant emotional toll that comes with dealing with a childhood medical issues.
March 18th, 2011 at 8:47 am
Here’s the link to the adopt cleft group on yahoo:
http://groups.yahoo.com/group/adoptcleft/
I highly recommend joining for pre, during and post adoption information and feedback from parents who have BTDT.
March 18th, 2011 at 10:33 am
My son was adopted in Feb. 2010 at the age of 7yrs. with a repaired cleft palate and severe to profound bi-lateral sensory neural deafness . Upon arriving home we had doctor appointments line up for the cleft team, ENT and an audiologist to check his loss of hearing. His cleft was repaired in China at the age of 1yrs old. They team said China did a wonderful job. At the ENT and Audiologist he did an amazing job but it was determined then that he would need some sort of amplification.
He will need a lot of orthodontics as his teeth are coming in at all angles. Also his upper jaw may require surgery in order to realign with his bottom jaw. He had some teeth with some abnormalities but when they fell out a re-grew they came in normal. His teeth looked like they had tons of decay when we were in China but when he went for his cleaning it was discovered it was just years of grime on his teeth.
I was warned before we sent in LOI that children with a cleft palate could have cognitive delays. My son is very bright! He does seems to have some more issues than we thought but we are dealing with them. He has an appointment with the neurologist to see if he is having seizures or if it is ticks. That appointment is next month.
He is now wearing hearing aids and those give him some sound awareness. Someone said MOST insurance companies cover hearing aides and that is NOT the case. The hearing aides in my sons ears cost $3,800 and our insurance company would not pay for them. If we decided to do a Cochlear Implant than they would cover all cost.
My son goes to a state deaf school that is 20 minutes from us. We have decided that we will not do CI’s at this time. My son had been deaf for 7yrs before we met him and has learn ASL extremely fast. He will always be deaf with or with out any aiding and we feel that he should have a firm knowledge of ASL.
In saying that we have done the MRI and CT scans just recently to see if he would be a candidate for a CI if the need should arise in the future. As I mention my son has a repaired cleft so we are going next week for genetic testing. There maybe more going on with him and his eye doctor is trying to rule out Ushers Syndrome.
Ushers Syndrome or retinitis pigmentosa is were a person is deaf and blind. A person can slowly lose their eye sight or it can happen rapidly. On my son’s first eye exam his doctor noticed lesions on his retina. We tried doing a different eye test called ERG. It was a very difficult test for him so we will be trying it again this year. If he does have this syndrome then we will be doing CI’s but if not then we will be sticking to ASL. If sometime down the road he expresses the desire to have CI’s then we will talk to him about it more.
We are probably one of the few who choose to do ASL over the oral route. Don’t get me wrong, he is getting speech training but they are not requiring him to not sign. I do not judge anyone who choose CI over ASL and I hope I do not receive any flames for my families choice. I am thinking of switching to a different ENT as he is pressuring us to implant our son.
Even knowing that my son my go blind at some point we have decided to adopt another child who is deaf. We hope to travel sometime late Summer early Fall. :)