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Special Needs Discussion – Urogenital and Gender issues


Today we are opening the comments up for those families who have adopted a child with urogenital and/or gender issues.

Once again, I encourage you to share whatever you feel someone considering a child with one or more of these issues 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 special needs, I encourage you to write about everything in one post and then copy and paste it into the relevant 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 again 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. Comment on your own situation without commenting on those who have commented before you.

The other posts in this series (so far) are:


 
 
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Note from RQ: The section below is for comments from ChinaAdoptTalk.com's community of registered readers. Please don't assume that I agree with any particular comment just because I let it stand. Posts are generally only removed if they don't follow the rules of the site. Anyone who fails to comply with the rules of the site may lose his or her posting privilege.


6 Responses to “Special Needs Discussion – Urogenital and Gender issues”

  1. solita Says:

    We found our kiddo on yahoo.com/group/AdvocateforWC last summer, and traveled to bring him home last December when he was 19 months old. We’ve been home only two and a half months, but he is fitting into our family wonderfully. He is a sweet, lovable child, super cuddly and extra super sweet to his big sister (home since April ’07). We are so, so, so happy that we found him. :)

    He was on the shared list with just the word ‘androgenity’, and we only had one chromosome test (46 XY) and one picture of his genitalia to make our decision by. A lot of research and deep thought is required when you are considering a child with ambiguous genitalia (Difference of Sexual Development- DSD) because the information is so scanty, there is so much secrecy involved in the field, and because even the experts out there have widely diverging opinions on the best way to interpret gender or sex identity. We could not find a pediatric urologist who was willing to look at the picture that we had, so we only had our regular pediatrician’s opinion (that this was a little boy with a buried microphallus) to go on before traveling.

    Returning home, we discovered that our child’s situation was far more complex. We have had a consultation with a leading ped urologist experienced in this area, and in his opinion, there is no way to use our child’s external genitalia to determine sex or gender identity. Certainly not a clear cut case of “this is a boy with ____”. So we are now faced with certain decisions about how much testing we would like to do to try and gather more info about hormone levels and internal structures. Some of the testing is pretty invasive, which raises attachment concerns . . . at this point we do have appointments with a ped endocrinologist to run blood work and hormone testing, but we are tabling the laproscopy decision until our child has been home longer and we feel better about attachment progress. Depending on the test results, we will be faced a new set of decisions . . . there is one strain of thought in the medical community that suggests surgeries (multiple) to assign sex identity is necessary, and should be done very early in the child’s life, and another that says that if there is any ambiguity (and no dire medical necessity), then surgery should be put off until the child can participate in the decision making process. We’re gathering as many points of view as we can, but I must admit that I lean heavily towards the ‘wait for the child’s input’ point of view. We believe that we live in an environment and family that is supportive enough to handle a gender transition if one becomes necessary in few years, and we are also very open to letting our child figure this out in whatever way he needs to. My DH and I thought about this issue a lot before adopting our child, and we decided that we had a solid support structure for a child dealing with this kind of situation.

    The ped uro said it was reasonable for us to be referring to our child as ‘he’ for right now, so we are ‘raising him as a boy’ until we can make a more well informed decision on how to check that pesky M or F box whenever we are asked. As of right now, we are sharing these issues only with our closest family members and those in the adoption community dealing with the same kinds of things. There are great families who have BTDT, across the whole complex spectrum of DSD issues who can lend support.

    In general, parents need to find a good team with a ped urologist, ped endocrinologist, and a child psychologist, and if they ever feel like a doctor is pushing them towards one course of action or another, or not giving them enough information about the consequences of a decision, they should get lots of additional opinions. It seems like there is a wide variety of biases in the medical community, and this is not the kind of thing you want to rush towards judgement about. Some of the surgeries that can be pursued are irreversible and have long term consequences, and parents will carry the burden of those decisions and have to account for them to their child when they grow up.

    Some resources:
    http://groups.yahoo.com/group/IntersexKidsChina
    http://www.med.umich.edu/yourchild/topics/dsd.htm
    http://stanmed.stanford.edu/2011spring/article4.html
    http://abcnews.go.com/Health/intersex-children-pose-ethical-dilemma-doctors-parents-genital/story?id=13153068
    http://www.apa.org/topics/sexuality/intersex.aspx#
    http://aiclegal.org/
    http://www.dsdguidelines.org/htdocs/parents/index.html

  2. eva Says:

    we brought home our child at 4-years-old about 1 year ago. our file said that this was a boy with normal XY DNA and “genital ambiguity.” we had a single genital photo and a very vague written description of his body. there had been no medical treatment or intervention before the adoption. we didn’t have a diagnosis, so we researched a great deal on our own about all kinds of DSDs or intersex conditions. we decided that this was our child.

    our child had been rasied as a boy, but it was clear as we got to know each other that she is a girl. she insisted with all her might – refusing her chinese and english names, answering only to “mei mei.” i’ll be forever thankful that we had really done our homework. we had deeply considered how DSDs can affect gender identity and knew that whoever L turned out to be was just right. i have to stress that we have a great agency and a couple of good social workers looking over our shoulders, but 95% of our homework related to the DSD was self-directed.

    since we didn’t have a diagnosis, we did some medical testing. there was a testosterone challenge test which involved giving her injections every day for a week and then doing a blood draw to see if she can produce a normal testosterone level – she can. and there was an ultrasound to determine if there were any female internal structures – there aren’t. we determined that our daughter has partial androgen insensitivity syndrome. basically, either there wasn’t the typical amount of testosterone present in utero for an XY baby or her body is insensitive to it. there was enough (or she is sensitive enough) to start the process of differentiating her genitals, but not to the usual degree. (all fetuses begin forming with female bodies. for XY babies, testosterone comes along at a critical moment and pushes differentiation that makes bodies look and function as typically male. except when it doesn’t.)

    parents considering kids with urogenital differences must consider that the same factors influencing genital development affect brain development. gender identity – feeling like a boy or a girl – is mostly in your brain. chromosomes and external influences are secondary here. make sure you can accept whomever you child turns out to be and have the support in your life to keep your balance while they figure it out.

    solita mentions above that there is conflict in the medical community about how best to treat kids with DSDs and there is – some advocate early intervention (surgery) and some advocate waiting until the child can fully participate in treatment decisions. there is however, NO conflict that i’ve found among adults who have DSDs. every account that i’ve read and every person i’ve had the honor of discussing such intimate history with is adamant. parents must not make irreversible treatment decisions for their kids. genital surgery is terribly risky in terms of future function and sensation. add to that that a baby, toddler, or very young child has not yet grappled fully with gender identity. the potential for disaster in any medically unnecessary treatment is far too great.

    for now, the plan is to let L grow up visiting her endocrinologist annually. if her gender identity remains stable (if she continues to feel fully like a girl), we’ll watch closely for the first signs of puberty. when we see those, we’ll give her a drug to block testosterone and prevent male puberty (deep voice, male hair patterns, etc.). sometime between 12 and 15 she’ll begin taking estrogen which will prompt all the secondary sex characteristics of female puberty (widening hips, breast development). she’ll take estrogen for the rest of her life, or until her 50s. there is no cancer risk associated with this unopposed estrogen because she doesn’t have a uterus, cervix or ovaries. she may choose to have surgery to change her genitals at any time in her life. we imagine not doing it until she has commited to blocking testosterone, but we’ll see. if it’s too hard to have a body that’s different and she continues to be clear about who she is, we’ll make that decision together.

    emotional and attachment issues have been far more challenging for our family so far. some of the emotional stuff is what you might anticipate adopting a child from a foster situation at 4-years-old. i think some of it is her reaction to being told she was a boy when she knew she wasn’t. she resists for the sake of it like no one i’ve ever met.

    solita has given great links above, so i’ll follow with a personal link to an article i posted on rainbow kids a while back:
    http://www.rainbowkids.com/ArticleDetails.aspx?id=733&title=Embracing the Unknown in Our Adoption&snid=47&snaid=8&sname=Ambiguous Genitalia

    i don’t have a forum name. this is my first comment on rumore queen. just want to elp families be prepared so children have the chance to thrive. thanks for hosting, RQ!

  3. waitingchild Says:

    We brought home our first son in May 2008. He was born with cloacal exstrophy, a birth defect that only occurs in 1 out of every 400,000 live births. It has been described to me as the “most severe birth defect compatible with human life.” Cloacal exstrophy is a variant of bladder exstrophy, in which hernias form in utero and the baby’s bladder is outside the body at birth. Corrective surgery has been performed with great success in the US.

    Exstrophy affects other systems. The colon may be involved, 95% of extstrophy babies have some degree of spina bifida, and there’s usually impact on reproductive areas. The Association for Bladder Exstrophy Community (ABC) is a great online source of information and support, as are the Johns Hopkins urology website, Children’s Medical Center in Dallas, and Children’s Hospital Boston. The United Ostomy Association has great printable resources. Medical supply companies will often give you sample products or direct you to manufacturers of ostomy supplies, who gladly offer samples.

    Because of the extremity of our son’s case, I was granted more information than most adoptive parents. Our son was in a Chinese-run medical foster home. His corrective surgery failed, and he was sent to the US for a repair of the failed correction. He lived at the edge of death his first 30 months and was in hospital for at least 12 of those. His case is unusual–he has no spina bifida, he has one kidney, imperforate anus, one testicle, and a “microphallus.” Now, he has a permanent colostomy and a urostomy (a stoma that looks like a colostomy on the right side of his belly and connects to his bladder) and he has to be catheterized every 4 hours to empty his bladder. He will have further surgery to realign and augment his penis when he’s older-which happens with 80% of boys born with exstrophy.

    Our incredible boy is nearly 6, and he looks like any other boy unless you see him naked. He also flings himself around like any other little boy-he climbs, swims, goes down the slide on his belly. His ostomies don’t rule our lives, although it did take me a good solid year of being at home with him to get the hang of managing his care routine. I can’t stress enough the importance of reading everything you can about exstrophy and talking to people. I found out which urologist in the US had performed the correction, and I contacted him as well to ask his advice and learn more about our son.

    Things that are easier than I expected–managing the ostomies and our little boy’s life in general. He is not ruled by his differences. The relationship with his first American urologist has been a lifesaver-literally. My friends/family are not as afraid of taking care of our child (parties/sleepovers) as I thought they’d be. The world did not end the first time our son’s colostomy pouch had a blowout while a friend was babysitting and my hubby and I were on a date. Everyone lived.

    Things that I wish I had known are many. Urologists rarely see exstrophy. By the time you’ve had your child home 2 years, you’ve had more practical education in managing exstrophy than many urologists have in their careers. You have to become the expert on your child’s care, and it’s hard–sometimes it means you have to stand up to a doctor if you think something’s wrong. Our son had a kidney infection 2 months ago, and I knew it was an infection, but the ER staff was reluctant to admit us. I kept pressing for what I knew my child needed, and at the end of it, I contacted the other urologist who’d done our son’s corrective repair. He backed me up on everything. And he gave me a great plan of action.

    You have to learn how to be diplomatic enough to keep the relationship with your local ER and urologist–your first responders in the event of a medical emergency and the folks who record your child’s non-emergency development–and yet aggressive enough to find a specialist who knows the rare condition your child has inside out. For us, it’s Dr. John Gearhart at Johns Hopkins. He is our failsafe. I would also say that if you don’t live within 2 hours of a well-known major children’s hospital, you should consider moving to a town that has one before you adopt a child with exstrophy. You also need to be prepared to change your plan-I didn’t know all the variables of our child’s situation, and my plan had to flex-but our child would have been unsafe if I’d had no plan at the beginning.

    You should meet with the specialist (urologist or stoma therapist) who will head your child’s care team BEFORE you leave the country to adopt. That way, if you’re in China and a wound site on your child becomes infected, you have someone you can email who will give you a quick response and you can stay calm. You can trust your adoption agency to manage your adoption, but at the end of the day, they are not medical care specialists. It’s important to remember that.

    I was not prepared for my child to be so ill-equipped to cope with change or crisis. This sounds stupid-I attended all the parent classes and am a great fan of Karyn Purvis, but I have been clueless for 2 1/2 years when it comes to our son’s emotional safety needs. He responds to loud noise, ER visits, shots, doctor visits, dental visits, beginning Kindergarten, like a person with Post-Traumatic Stress Disorder. I thought he’d have outgrown most of that by now-and I of all people should know better than that. He has the vocabulary of a 4th grader, and he’s very sophisticated in communicating his feelings for the most part, but I have tended towards treating that as if it’s the whole picture of his maturity, and it’s not. Recently, we had to start occupational therapy to address some of the challenges he was having, and that is TYPICAL of children who have experienced chronic pain, long hospital stays, frequent life-threatening illness, and trauma (like separating from your caregivers and culture). So I’m still learning.

    I think the best decision I could have made for our son was to stay home from work these first 3 years. It has been HARD financially, but I know that he is safer physically and emotionally because of that. I had originally planned to work part time, and I had to let go of that when I learned that his needs and health were more complicated than I expected.

    The other thing I’m learning is patience. Adopting a child with exstrophy is totally doable, but you have to come into it well armed with education and the understanding that you will be the teacher of your child in managing a lifelong condition. People may encourage you or your child to pray for a miracle, for the stomas to be “healed.” Educators may be stunned by your child’s needs. Preschool teachers (or your parents, or you) may get physically ill the first time they (you) see those stomas. ER nurses may say stupid things in front of your child, like, “I have to give credit to folks like you who will adopt those broken kids nobody else wants.” Your favorite TV show may crack jokes about a micropenis. Your child may someday say, “I’m not wonderfully made like you are-I can’t pee like you do.” It’s ok, and it’s going to be ok. I’m not here to rescue anyone. I’m here to be a Mama.

  4. eva Says:

    i realized that i should add this: with 1 year since our adoption and less than that since helping L make a gender transition, our daughter is doing beautifully! we have specific emotional challenges that we’re working on with a counselor. but her progress is staggering. she is an incredible, sunny, energetic and loving kid. her physical health is stellar despite some malnutrition that was evident when we met. we would do it again.

  5. solita Says:

    Eva, I would just like to say THANK YOU for the article you wrote on Rainbow Kids. It was a big help to my DH and I before we traveled to China to bring home our child. And I agree – I would do it again in a heartbeat! :)

  6. portlandval Says:

    Not much is known about our DD’s genetic background so I am just posting what I know at this time. My DD was adopted at 31 months, had only been in the orphanage her entire life and was our second adopted daughter. We are home 2.5 years now. I am portlandval on the forum and would welcome any questions about anything I have posted.

    As I have posted previously, our daughter had numerous birth defects: imperforate anus, extra right thumb, tethered cord, malrotation of the midgut and ever so slightly malformed left kidney and left outer ear. We’ve had her bladder, kidneys and hearing tested more than once to be sure that function is not impaired and evidently they are just slightly mis-shapen but function normally. Her uterus is normal, her vagina needs repair and doctors say she should never vaginally deliver a baby.

    Here’s the paradox with her…parts that look completely normal do not function exactly right and things that look malformed function just fine. It’s really been quite a journey to puzzle her out!

    I am posting here because during my DD’s laparascopic abdominal surgery for malrotation of the small intestines, the surgeon scoped many of her inner organs and discovered her appendix had been removed in China (we didn’t know) and that she had what is called “streaked ovaries.” Evidently, her teensy tinsy organs do not appear normal and it called for a blood test whereupon we found her to have what is known as genetic mosaicism. Some of her cells are XO, some are XX (normal) and some are XXX. Most of her blood is XXX or trisomy X. I think of this as AMAZON woman (trying for a little humor). It means that in all likelihood she is sterile and we note that she does not have strong female identity and called herself a “boy” when we began teaching her about gender. But, as time has progressed, she just seems like a regular Tom-boy and we are open to her self-defining her identity. Her genitalia and anatomy are all female but her behavior and interests can sometimes be very stereotypicallly male. Sometimes she is in a Princess dress, vrooming a truck around the floor. So…who knows what she will enjoy or want to be when she grows up? Our cultural and family background is very accepting of anything that might happen in the future which is fortunate because we didn’t know about these issues at all.

    In fact, very little is known about how her phenotype will be expressed from her genetic profile. Many people have this genetic profile but don’t know it because it may not be expressed in any physical way. Others say it can affect things like social awareness, physical gracefulness and so on. It is much too early to say anything about how it is being expressed in her life and doctors don’t know either. We are waiting to see what happens. It is likely she will need hormones to develop as a female but we are seeing a pediatric gynecologist this summer to see what there is to say. There is no pediatric gynecologist in our town so we are traveling to Cincinnati Children’s not just for her vaginal repair but also to hear what this highly specialized doctor has to say.

    When we spoke to a geneticist he said that “she dodged a bullet” in trisomy because trisomy X (sex chromosomes) is NOT going to adversely affect cognitive or physical development while other trisomies are very, very life altering and can lead to early death. Also, he told us that the genetic profile is completely INDEPENDENT of her physical differences. He said one did not cause the other or vice versa. Our daughter is about a one-in-a-million child and there are few others walking around the Earth like her. I guess a parent could be sad about the fact that she is not like everyone else but the way we look at it is this….she survived her first Mom’s pregnancy to term, abandonment, surgery in China, trasition to USA, multiple surgeries and all the trauma that goes with these events. She must have one heck-of-a life’s mission. She is like a rare precious gem to us. She is definitely NOT your run-of-the-mill person. I wish you could know her because then you’d see that all the medical and genetic stuff is very secondary to her being a terrific little girl. Most of the people in our family do not know the full extent of her unique background because we want the person to shine through rather than her complexities and all of these anomalies are completely invisible.