Just following up on the first, monitoring and such. In the meantime, our research has told us a bunch of things.
1. Hydrocephalus is by far the most significant condition our baby has. The others are physical defects that can be surgically repaired, but hydro often causes serious brain damage. Nobody really mentioned this.
2. The news that Aria does not have trisomy 18, 13, or 21 does not necessarily indicate a positive outcome. She still has all of these (separate) conditions, any one of which is a serious concern for a newborn.
3. Hydro outcomes are not predictable. They're just not. I wish I could emphasize this in more than bold. Everybody wants answers, and absolutely nobody can tell you anything useful. Some kids are normal/close to normal. Others are seriously disabled, and everything in between. There is no way to tell the difference. Most people don't really get this point. Part of our nature is to search for answers, but there won't be any for a while.
We go in for another ultrasound, still reeling from the findings of the first one. Now the tech discovers another significant problem. Agenesis of the corpus callosum. Our baby Aria is missing the structure that allows the left and right hemispheres of the brain to communicate. Nobody can tell us what this means either.
The ventricles are now measuring 22 mm, meaning the hydrocephalus diagnosis is confirmed. Cerebrospinal fluid is not being absorbed as it normally should. Most hydro babies' skulls expand because of the pressure and they are born with large heads. Shunts are sometimes surgically installed to allow the fluid to drain to a location where it can be absorbed. Aria's head is measuring small. The fluid buildup appears to be preventing her brain from developing rather than putting pressure on her skull and expanding it.
People are interesting, what they say when they learn all this. I recognize their intent. They're trying to be helpful by giving me hope. I nod and smile. I don't think they understand that my hopes have been downgraded to "maybe I'll get to hold Aria and tell her I love her before she gets taken to the NICU" and long-term "I hope Aria will be able to hear her mother sing. She has such a beautiful voice." and even longer-term "I hope Daisy (our other daughter) doesn't resent us for bringing Aria into the world." I don't want to get carried away with worst-case scenarios, but even the best-case will likely represent a significant difference from the life we have now. We've accepted that. But it still sucks.
This was our last visit locally--from now on, we will be followed in Indianapolis.
She won't resent you. This one I can promise you about. Both in our family, and in the work I do, I have learned that if they continue to know they are loved (which you are onto), they will love their siblings fiercely, and be influenced for the better by that love. Siblings of "special" kids are just amazing people. I know she was already a great kid, but loving Aria will give her a depth she might otherwise never have. You did good. :)
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