My husband & I have been doing a lot of thinking this week about emotions and common sense... we have been considering what medical needs that a child might have, other than a heart defect, that we could both emotionally and practically deal with in our little corner of the world.
The prequel to this week of "deep thought" is the fact that it now seems likely that our adoption agency will be doing the matching for families who have requested a child through the Waiting Child Program (WCP), and not the CCAA. When we submitted our dossier, it was under the belief that the file would go to the CCAA and be matched by the CCAA division that administers the WCP. In light of this, we decided that we would be very specific about the nature of the medical needs that we would accept. This is because when the CCAA matches a family directly, it is essentially the same process as for the regular or non-special needs program- you receive your child's referral and get to travel 6-8 weeks later. Of course, there is the opportunity to refuse the referral, as there is with the nsn program, but, let's face it- no one wants to do that! And there is no real possibility of getting additional medical information, etc. before being required to return the documentation to China indicating that you accept this child. So, if a child has some unexpected medical complications, there is no real ability to discuss these fully with a specialist, or request additional tests be done, and so forth. That is why we specifically requested a little boy or girl with a correctable heart defect- the number of these heart conditions was fairly small, and we were confident that there would be few problems accessing the specialist medical care we'd need for these.
When being matched from a WC list, this situation is quite different. Since the agency does the match, you are able to take your time before agreeing to accept a particular child, and, so, you are encouraged to seek medical and professional opinions. You can take a bit more time with this decision, and if a particular family decides to return a child's file for whatever reason, the agency can send it to another family until the right one is found.
Well, with all the changes happening right now at the CCAA, it is looking like we will be matched from a WC list by our agency. And, if this is the case, then we are much more comfortable listing additional medical needs that we would accept. Why? Well, if we wait for our agency to receive the file of a child with a heart defect, it could take quite a long time to be matched. The lists don't come all that often and each one might have between 8-10 children to be matched. As well, now that we can actually take our time in deciding whether to accept the proposal of a child, we're much more comfortable about considering other medical conditions. Now the question became "Which ones?".
Cleft lip and cleft palate (cl/cp) issues were at the top of the list for consideration. Cleft defects are very common among children in the WCP, as cl/cp is, worldwide, a very common birth defect (~1/700 live births). Some research suggests that Asians are affected at a slightly higher rate. Given social and cultural conditions in China, cleft issues are not easy for birth families to deal with. Surgery is very expensive and out of reach for most average citizens of China, and there is a social stigma attached to facial differences. Of course, that is not unique to China. But, I have read that the center of the face carries particular significance and symbolism in Chinese culture, equated perhaps to the Western concept of someone's "heart".
The fact is that most people react emotionally to facial differences. As humans, we've evolved to rely a lot on facial cues from others. Infants recognize facial uniqueness early on, and may be predisposed to prefer pictures of faces over pictures of "non-faces"- faces that have had their features completely reorganized. So, our collective feelings about faces run deep. It is not surprising then, that so do our collective prejudices. Whether we like to admit it or not, our society often takes us at "face value", makes quick judgements about us based on our facial features. A noticeable facial difference of any sort often draws a second look from people- not always out of maliciousness or an insensitive curiosity, but as a natural reflex, I believe, based on the way that we humans just are. Of course, it is how people respond after that reflexive second look that tells us something about their maturity and/or character.
So, we have been coming to terms with our personal feelings about facial differences and have been imagining how effective we would be in parenting a child with a cleft issue. But why imagine what you might have to deal with (don't we always imagine the worst-case scenario), when you can ask parents with cleft-affected children? SO, that is what I have spent the better part of last week doing- contacting some local and not-so-local parents, many who have adopted children with clefts, and asking them about their experiences. I've also been very lucky to be able to speak with a mom-in-waiting, in the process of adopting her child from China, who is cleft-affected herself (and I never would have guessed it if she hadn't told me!).
The generosity of these parents in terms of their willingness to share their personal stories has been amazing! And the news is pretty good. I have had some frank comments about the stress that having your child go through surgery creates, but that is par for the course with any child. No one really tried to downplay the need for on-going medical care- ear infections and the need for "tubes" in the ears are common (btdt, survived, and got the t-shirt with birth child #2!), speech therapy for a few years is often needed, and it is likely that a child with a cleft will need at least 2-3 surgeries before adulthood. Manageable? I think so, in the grand scheme of things. Especially with the medical support of a full cleft palate and craniofacial team (whose surgeon has volunteered with Operation Smile http://www.operationsmile.org/in Peru and China) just 20 minutes away. I don't know if we could ask for a better situation. (Meant to be?)
As for how people respond to cleft-affected children, that seems to be almost a moot point with the plastic surgery and orthodontic treatments available these days. I think some of these doctors are artists, and can sculpt a defect into a truly esthetic work of beauty. Not that cleft-affected kids are not beautiful before surgery. Once you are able to see past the "defect", you see the "wide smile" and the real child behind it. Want to see for yourself? Check out one of "Love Without Boundaries" Top 10 pictures of 2006 here:
So, if we're lucky enough to get referred a child who has cleft issues, I'm sure we'll all be fine. There is still a lot to learn, but I know there is a lot of support available out there. And that is both humbling and wonderful.
Many, many thanks to Wendy, Sharon, Susan, Nancy, Sabra, Pauweliena, Lisa and everyone else who has shared and offered advice. I'm sure we'll be in touch again!