I may have offended some or perplexed others when I said we could handle a diagnosis of Cornelia de Lange Syndrome but were certian we couldn't handle Fetal Alcohol Syndrome. Let me explain. Bio-Mom is in a drug and alcohol rehab program and has her own cognitive challenges. If the baby's disability is a direct result of her Mom's drinking/drugging (FAS) I would have such a hard time supporting the Bio-Mom and the current plan for reunification...I would feel this resentment/blame/anger. The baby having a genetic disorder, a mutation of her genes, feels different to me. I feel like I can better support the Bio-Mom's role in parenting and reunifying with her ...child, if she is able, A diagnosis of CdLS is a new framework for explaining the baby's multiple hospitalizations for Failure To Thrive. Failure to Thrive, on the other hand, refelcts poorly on Bio-Mom's ability to care for/maintain the child.
The other issue is the broad spectrum /range of issues from FAS..some of which don't rear their ugly little heads until later. It is the Big Unknown which scares me, With Cornelai de Lange there are indeed some awful things to deal with: heart defects, gastro-intestinal issues, mobility, communication disorders.....but for the most part, there is a protocal, a treatment plan, a series of steps or tests, modifications, or surgeries to deal with each issue.
Also, I think it is just how I am wired: my inner (OK - not so inner) Control Freak has a hard time with a disorder that doesn't play by the predictable rules.
The Genetics Dr. said although the baby is diagnosed with CdLS, it is possible (given Mom's History) that she could have FAS as a a secondary issue...We will just have to wait and see when she gets to the preschool stage to see how some of these issues develop. YIKES
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You know what is funny, is that I felt the same way you describe when you gave the dx. "at least it isn't because of birth mom." At least she wouldn't feel guilty and that this was caused by the choices she was making before rehab.
ReplyDeletethanks for explaining/indulging my curiosity! your thought process makes a lot of sense to me, not that you had to justify anything to a random reader. I was just curious as a prospective parent (at some point in the future) how different parents deal with medical uncertainties.
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