I've been thinking about this post for a long time.
Our spunky, cuddly, beautiful, and curious daughter, Brennyn was adopted from the China waiting child program.
Her original "special need" in the referral package from china was listed as syndactyly, polydactyly and missing digit.
The diagnosis from Canada is slightly different (and I'm being sarcastic because it's very different). She has syndactyly and cleft hand, along with a genetic disorder called ADULT: Acro-Dermato-Ungual-Lacrimal-Tooth syndrome(a form/combination of ectodermal dysplasia). I have no idea where the polydactyly came from because there are no extra digits.
Now, they certainly would not have suspected a genetic syndrome like this in China, because the number of people with ADULT syndrome in the world is in the 100's (if that many). Brennyn is Toronto Sick Kids first patient with this syndrome. The Geneticist did not seem to think she had this, until the DNA/blood test results came back from the lab in the USA.
I'll admit it, I am so thankful that Brennyn is here in Canada. How would she have been medically treated in China?? Would she have been able to see a dentist at all? A skin specialist and optometrist? What would her life have been like? We are lucky to have great medical care here in Canada. However, not everything is covered such as skin treatments, dental work (we have a great dental plan though), some medical treatments and prescriptions (again, good work medical plan). I often wonder if someone in her birth family has this condition, the odds are 50% that one of her parents has some form of this syndrome. They probably don't even have a diagnosis!
I am also thankful that my agency was able to prepare us that there was more to Brennyn's referral and medical information than what was specified. Our agency has been given a bad rap lately (and I'll be the first to admit it is for a darn good reason) but their Waiting Child co-ordinator was great. She was there for us while in China, and she was there for us when it was time to make that initial decision. She did not pressure us in any way to say yes or no to Brennyn's referral. In fact she told me in no uncertain terms that she was there to find this child a home, the right home and that there were a lot of unknowns with her medical info.
She wouldn't even let us see her referral pictures at first. We were only given her medical information to read over.
She also put us in touch with a doctor at CHEO (in Ottawa) who answered our many, many questions to the best of her ability (and even passed the medical info to a few other specialists at CHEO). In the end, I did ask to see her picture before we made our decision.
I will also admit that we did take some time to make our decision (this was back when our agency was given individual lists of children's files from the CCAA).
Is it going to be an easy road for my daughter, No. She has at least 3 more hand surgeries to go through, countless appointments with 4 different specialists and the unknowns of having a syndrome that no-one seems to know that much about. She is going to have to miss a lot of school as well over the next few years for medical appts. and operations.
I just hope she knows how much we love her for who she is. She is the spunkiest, crazy kid around and I love her personality. She charms everyone she meets. Don't get me wrong, she can be challenging at times (like when I can overhear the gymnastic coach saying "Brennyn, if you don't stop XYZ, you're going in a time out" for the tenth time), but I don't want her to change at all! I am so very lucky to be the mother to this little girl. She is so curious about everything, and just wants to explore the world. She doesn't care if you are a kid, adult, animal, she wants to hang out with you and make you happy! She has such a big, happy heart!