Today was a tough day. I mentioned the care conference we would be having with neurology today. I’ve also thought no matter what they said I wouldn’t allow myself to get upset, because these boys have already proven they don’t always follow the rules. And an MRI doesn’t define them.
But no matter how prepared I am, or strong I want to be, I can only put on a brave face for so long while a room of highly intelligent, very educated, experienced doctors tell us our boys will not walk or talk, and won’t live long.
We’ve heard that before. That was the prognosis from the moment we first heard “Lissencephaly”. So this wasn’t new news. It’s just so hard to look at these beautiful, precious boys and accept that prognosis is even possible.
Oddly enough, the MRI images contained a lot of good news:
- The MRI did show some sulcation (wrinkling). (Just not nearly as much as it should have.)
- The Vermis is actually fully present, just undersized. With the extra fluid in their brains the ultrasound didn’t reveal it all. Ironically, that might mean they technically don’t even have the Dandy Walker Malformation that kicked off this crazy journey after all.
- Their mid brain looks great.
- Their entire brain stem looks great.
- The corpus callosum is partially present (near the front).
But in spite of all that…the Lissencephaly is still very ominous. And the other things are less relevant. The boys have a lot of fluid in their brains, and it is NOT due to a plumbing problem. (Which is why we haven’t seen a spike in fluid.) Instead, it is more of a space filler…to make up for the lack of brain. In particular, they are missing a lot of cerebral cortex.
The pediatric neurologist suspects Lissencephaly type 1. If that’s the case, the life expectancy is 3 months to 2 years, with death likely being due to aspiration or recurrent pneumonia. They are running another genetic test on chromosome 17 to look for this. I mentioned that we had normal results on the genetic testing that looked for quantity issues (too many or too few of a particular item). THIS will look for a rearrangement, or a “spelling” error if you will. Those results likely won’t be back for 4-6 long weeks.
Even if that comes back normal, she did not see a “good” scenario being likely. Their life expectancy might increase a little, but she does not feel they will have a normal quality of life. Liss 1 or not, she suspects the boys will not walk or talk.
She admitted that the results are likely skewed toward the worst cases. But she can only speak to the data that is out there. One child in her care with Liss type 1 lived to the age of 9. We don’t know how long our boys have, or if we can prove all of this wrong and rewrite the medical book.
All we can do is keep on surrounding them with love, and celebrating every moment we can.
- Yesterday, L was crying (the first time I heard a real cry from him) and when I picked him up, he was comforted.
- For the MRI, they unhooked the boys and used special MRI monitors. So I was able to carry N, cord free, for 20 feet. It felt wonderful.
- We recorded a “Sounds of Love” cd with a few songs, and J and I reading them some stories. They gave us a little speaker and a CD player so we could play it in their isolette. Both of them turned their faces towards it, and L inched his little nose closer.
At the end of the day, our love is strong, our boys are precious, and God is still good.