"We have some heavy news to share with you....Last week the results of a routine ultrasound led to the unfortunate diagnosis of semi lobar holoprosencephaly in our daughter...her name is Abigail. In a nutshell, holoprosencephaly means that around 4th week of development, the brain failed to properly divide. Semi lobar means that it did divide somewhat, but still not enough to be "normal". Could be quite far from normal, actually. It's caused by random abnormalities in her genes or by a chromosomal abnormality. This will affect both her cognitive and physical development, though we won't know exactly to what degree until she is born. She'll very likely never walk or talk, and she will have some facial deformities. She's also may have issues with eating, sleeping, and seizures. Our doctors believe at this point that she should make it full term, though her life expectancy after birth will really be determined by how severe her symptoms are.
I apologize if this seems like a lot of information (or frankly too much info) to be sharing, but these seem to be the answers to the questions we've been asked. No, there's no cure, no operations or procedures that can be done, and there's no chance that she doesn't actually have this problem. We just have to accept it, deal with it, and pray that we're strong enough to take care of her the way she deserves for the time she's with us.
Please don't be offended that we're sharing via email; we've just found telling our story multiple times to be tiring, and we want to include you in what's going on with our family. Please don't feel awkward around us, as we're going to be seeing several of you in the upcoming weeks for happy occasions. We appreciate you keeping us in your prayers. Love, Matt & DG"
It seems like we wrote that a lifetime ago.
I don't think I ever mentioned it, but we had to wait five months for Abby's autopsy meeting. That's a LONG time! I'm glad we had it done though; we received answers to most if not all of our questions, and all of the doctors there were incredibly thoughtful and compassionate in their presentation and response to our questions. They determined that Abby had Alobar HPE (as opposed to semilobar, or not having HPE at all) and CONS along with Lissencephaly and a host of secondary conditions. By a host I mean almost an entire 8.5x11 page of bullet points of conditions. I stopped looking them up after a while because I decided it didn't really matter.
We've all been missing her a lot lately. Love you Abby, XOXO
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| Abby's crib, with all her stuffed animals and blankets |
