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A few questions

As I’m working on the Post Referral/Post TA survey, I need a few more pieces of information.

1. What countries are currently adopting from China? Here is the list from the CCAA site, but it’s a few years old and I want to make sure we don’t miss anyone:

* Australia
* Belgium
* Canada
* Denmark
* Iceland
* Ireland
* Italy
* Finland
* France
* Holland (shouldn’t this be Netherlands??)
* New Zealand
* Norway
* Singapore
* Spain
* Sweden
* UK
* USA

2. A list of Special Needs, here is what I have so far, from combining a few lists:

* 22q11 deletion syndrome
* Albinism
* Ambiguous Genitalia
* Amblyopia
* Amniotic band syndrome
* Amniotic Banding/ Missing Limb
* Anal Atresia
* Anorectal malformations
* Apraxia/ Mute
* Arachnoid Cyst
* Arthrogryposis
* Atresia
* Atrial septal defect
* Autism
* Blindness
* Brachial Plexus Injury
* Burns
* Cafe au lait spot
* Cataracts
* Cerebral Palsy
* Cleft Lip/ Palate
* Club Feet
* Concealed or Inconspicuous Penis
* Congenital Blue Nevus
* Congenital Nevus Birthmark
* Congenital Syphilis
* Congenital Torticollis (Twisted Neck)
* Deafness/ Hearing Loss
* Diabetes
* DiGeorge syndrome
* Down Syndrome
* Dwarfism
* Ectodermal Dysplasia
* Ezcema
* Failure to Thrive
* Feeding/ Swallowing Issues
* Fibular/ Tibular Hemimelia
* Food Allergies
* Funnel Chest/ Pigeon Breast
* G6PD deficiency
* Gastroschisis
* Glaucoma
* Heart Defects
* Hemangiomas
* Hemifacial Microsomia
* Hemihyperplasia
* Hemihypertrophy
* Hemolytic anemia
* Hemophilia
* Hep A
* Hep B
* Hep C
* Hernia
* Hip Dysplasia
* HIV
* Hydrocephalus
* Hypoplastic left heart syndrome
* Hypospadias
* Ichthyosis
* Imperforate anus
* Lead Poisoning
* Lymphedema
* Megacolon
* Meningitis
* Meningocele
* Microtia and Atresia
* Missing Eye(s)
* Mongolian spot
* Myelomeningocele
* Neurofibromatosis
* Nevus
* NF1
* NF2
* Nystagmus
* Osteogenesis Imperfecta (Brittle Bone Disease)
* Patent ductus arteriosus
* Polands syndrome
* Polio
* Port Wine Birthmark
* Ptosis
* Pyloric Stenosis
* Radial Club Hand
* Rickets
* Sacrococcygeal teratoma
* Scabies
* Scoliosis
* Seizure Disorders
* Spina Bifida
* Strabismus
* Syndactyly
* Teratoma
* Tethered cord
* Tetroloy of fallot
* Thalassemia
* Transposition of the great arteries
* Tuberculosis
* Turner’s Syndrome
* Undescended Testes
* Velocardiofacial syndrome
* Ventricular septal defect

Some of these seem to be saying the same thing, or something close enough that a family may not know for sure which box to check if they have sketchy medical information. If there are items that should be combined, I’d like to do that. I don’t want families having to make the choice between two items and just having to do eenie meenie miney moe to decide which one (or both) to check.

This entry was posted on Monday, February 22nd, 2010 at 8:11 am and is filed under Polls & number gathering. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.


 
 
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33 Responses to “A few questions”

  1. 2littleroses Says:
    February 22nd, 2010 at 9:07 am

    would it be easier to put the SN in broad medical catagories- like cardiac, craniofacial, skeletal, neuro, genetic, etc?

  2. joyleigh Says:
    February 22nd, 2010 at 9:09 am

    I noticed external hydrocephalus was missing. It seems to be a common diagnosis. We adopted a little girl diagnosed with it and I’ve talked with others considering this adoption. It can fall under hydrocephalus, but it is actually a different diagnosis with different treatment and different prognosis. (our bio son has congenital hydro) It really depends on how specific you want to get. If I didn’t see external hydrocephalus, and I was taking the survey, I would just mark hydrocephalus… so either way is fine.

    Joy

  3. waitingagain Says:
    February 22nd, 2010 at 9:31 am

    Is mongolian spot considered as SN? Then a lot of our children would be classified as SN. Or maybe it counts if the mongolian spot is placed in the face/hands?

  4. ndirish Says:
    February 22nd, 2010 at 10:03 am

    Since the kind of spina bifida is often misdiagnosed in the referals anyway, I would lump spina bifida, tethered cord, meningocele, and myelomeningocele into the same category of “spina bifida”

  5. dutchdeb Says:
    February 22nd, 2010 at 10:05 am

    waitingagain, mongolian spot is not a SN. You can see it as a birthmark. Most mongolian spots are disapearing when the child is getting older.

  6. smiling lady Says:
    February 22nd, 2010 at 10:12 am

    Hi RQ,
    Yes, Holland should be ‘The Netherlands’ or just ‘Netherlands’. That’s the official name, but were used to being called Holland. It’s all the same to me.
    ;o)

  7. Mom23now Says:
    February 22nd, 2010 at 10:36 am

    You have listed “heart defects” and you also have some of the heart defects broken out, like ASD, VSD, TOF, PDA, etc. You may change heart defects to “Multiple heart defects” or something.

  8. peanutbutterpie Says:
    February 22nd, 2010 at 10:37 am

    Another reason for a kiddo to be on the special needs list is simply “age”.

  9. zhaonuer Says:
    February 22nd, 2010 at 10:40 am

    Has there ever been a child referred SN for Mongolian Spots alone? I agree with Waitingagain that it is strange to have that on a list of SNs. Perhaps it is something that is mentioned along with other SNs?

  10. britsmum Says:
    February 22nd, 2010 at 11:54 am

    Yes, I agree peanutbutterpie, for some kids, just being over 5 is a special need.

    Many healthy older (over 5) kids are included in these special camps with kids with moderate to severe sn. Age is conisdered sn.

  11. belgian_family Says:
    February 22nd, 2010 at 11:54 am

    Belgium is still on the list of countries currently adopting from China

  12. scdelacruz Says:
    February 22nd, 2010 at 12:00 pm

    We just accepted a match for a precious little boy with “Cognital Knee dislocation”. He is unable to bend his left knee. It sometimes is accompanined with a hip dislocation as well.

    So, maybe a broader term such as Orthopedic needs.

  13. waitingforlibby Says:
    February 22nd, 2010 at 12:10 pm

    Re: mongolian spots…I saw a little girl listed with this SN a few years ago. She had a very large one over one of her eyes. My DD has them all over her back, bottom, and shoulders. She was adopted through the SN program, but the mongolian spots were not considered a SN. I think it’s only a SN if the child has large ones on his/her face (and the CCAA may not classify that as a SN anymore).

  14. doc33 Says:
    February 22nd, 2010 at 12:10 pm

    The older child is a big one, and has been the topic of many conversations on the forum.

    I think the mongolian spot that is being referred to, is actually a nevus.

  15. ttbham Says:
    February 22nd, 2010 at 12:18 pm

    My daughter had low birth weight as her special needs.

  16. ash2008 Says:
    February 22nd, 2010 at 12:52 pm

    As far as heart needs, my daughter also had Partial Anomalous Pulmonary Venous Connection (PAPVC).

  17. littleperson647 Says:
    February 22nd, 2010 at 1:12 pm

    Are all theses special needs of children avaiable for every country? I have a friend who had adopted a child from the NSN rederral and now is waiting for a second time. she has a bio brother who has down syndrome and had asked if there were children with thid SN and she was told no. Does any one know why?

    She feels taht she could raise a child with down syndrome. She is very close to her brother.

    Littleperson647

  18. momofnlc Says:
    February 22nd, 2010 at 1:29 pm

    Are these needs as actually listed by the CCAA on referral paperwork or needs that were found once the child was in the USA?

    On another note, NF1 and NF2 are forms of Neurofibromatosis, if you are trying to narrow down the needs.

  19. hangingonby1redthread Says:
    February 22nd, 2010 at 1:34 pm

    Our son has Epidermolysis bullosa and even though it is very rare I do know of one other family considering a child from China with this need.

  20. mom3boys Says:
    February 22nd, 2010 at 2:04 pm

    One of the big ones that I have seen is developmental delay. I don’t see that on the list. I see failure to thrive, but it really doesn’t fit all developmental delay. Our daughter and two others with whom we traveled also had this diagnosis. Fortunately, they all are doing just fine!

  21. Hopetyhope Says:
    February 22nd, 2010 at 2:26 pm

    Cleft hands and cleft feet should be added.

  22. Hopefulforourlittlegirl Says:
    February 22nd, 2010 at 2:26 pm

    Very similar and sometimes part of a cerebral palsy diagnosis, hemiplegia or hemiparesis. But, it can also just be hemiplegia or hemiparesis and not considered cerebral palsy. But, they could easily be confused in the referral paperwork, so possibly each of these terms could be grouped together with cerebral palsy?

  23. guangximom Says:
    February 22nd, 2010 at 2:30 pm

    Littleperson647,

    Not sure what country you are in, but I have seen several down syndrome kids on different agency SN lists. In fact, I just checked my agency’s site and there are at least 4 down syndrome children on it right now.

  24. thechinamom Says:
    February 22nd, 2010 at 3:47 pm

    We adopted Esther from LangFang Childrens Village with a Teratoma Tumor. Meaning she lost a twin and it had formed a tumor. Rare and I have not seen another adoption with it.
    At first she was listed as Spina Bifida, then a mylengocele. I talked to her foster parents and they told me her SN and how it took 2 months for her to become well enough to have the removal surgery.

  25. RaisingArizona Says:
    February 22nd, 2010 at 3:56 pm

    Anal atresia and imperforate anus should be grouped together for the purpose of a SN checklist. They are actually 2 different diagnoses in the US, but China lumps them together. If a child has a SN listed as anal atresia, it is almost always imperforate anus.

  26. daisycat Says:
    February 22nd, 2010 at 4:11 pm

    I would doubt if Hepatitis A would show as a special need? Also I think Andorra was an approved country for China adoptions albeit a very small one!

  27. Mamman Says:
    February 22nd, 2010 at 4:12 pm

    Limb differences are a common special need, and there are so many different ones! Cleft hands and feet as mentioned, missing parts and extra parts of hands and feet. Some may be diagnosed as amniotic band syndrome, some not. It is absolutely impossible to cover them all as their own cathegories, some will inevitable not be covered. I’d recommend to lump them all together as “limb differences” and to, to be clear, add “except club feet” which I think should be it’s own cathegory. And maybe club hands too? I don’t know much about that diagnosis.

  28. samba2nite Says:
    February 22nd, 2010 at 4:29 pm

    One of our yahoos was diagnosed with epilepsy which after reviewing her file it was clear that she had febrile seizures which are fairly common and dispear with age. She is home and has never had a seizure. Diva attitude yes seizure no. I would add it to the list of sn. Samba in sac talesfromthebigtomato.blogspot.com

  29. orland_mom Says:
    February 22nd, 2010 at 4:34 pm

    thechinamom,

    Our DD from Datong City in Shanxi had a sacrococcygeal terratoma. On her medical report she was listed as having spina, but upon seeing her it was clear that she did not. She was 27 months when we finally brought her home and she had surgery immediately to correct it. Thank goodness she is doing fabulous and has no lasting effects from it. She only has to be tested for blood tumor markers every 3-6 months to make sure they got it all. Was your daughters removed before you brought her home? Just curious because our DD’s was very bad and she probably wouldn’t have survived another year without the surgery. Also, the longer the tumor is present, the higher the chance of cancer. I know this is a pretty rare condition for all children according to our great surgeon here in the States. He just said it is usually removed upon birth.

  30. orland_mom Says:
    February 22nd, 2010 at 4:35 pm

    sorry, that should be **spina bifida**

  31. Sumiao Says:
    February 22nd, 2010 at 4:37 pm

    You may also want to add:

    Tricuspid Atresia (heart defect)
    Hypoplastic right heart syndrome

    Also, you might want to cross-reference your list against nohandsbutours.com a web-site dedicated to informing SN parents and hopeful SN parents about the different medical issues.

  32. thechinamom Says:
    February 22nd, 2010 at 7:39 pm

    It was removed before we brought her home, she was 3.5 yrs old at Gotcha day. She was very sick, and would not have survived if they had not removed it a Beijing Childrens.
    She has a nasty scar which we are looking at some cosmetic surgery later on to help. Its very deep and needs filled in at her sacral area.
    We too, were told its very rare.

  33. NovLID Says:
    February 23rd, 2010 at 12:58 am

    Our older daughter was diagnosed in China with a tumor and that was listed as her special need. She came home tumor free though!