When Pearl was a week old, the NICU doctors had an MRI done to confirm her prenatal ultrasound diagnosis. We had the scan sent to the Carter Centers in Dallas, who spend their time researching Holoprosencephaly & related brain malformations. I received a call from them today, followed by an email. They have reviewed Pearl’s brain scan and diagnosed her with semi-lobar HPE, not alobar, as we previously thought. This is one level less severe than alobar HPE. We are estatic!
In some ways, this information seems a matter of semantics. This classification does not change who Pearl is. It does not change the way God created her brain and body. It does not change the number of days he has already planned for her. And for the most part it will not change her treatment plan. She still has seizures that need medication; she still needs a tube to help her eat; and she still needs therapy to help her learn to use her body. What it does change is the medical statistics and the way some doctors may view her prognosis. We may have more people joining us in hoping towards greater milestones and a longer life.
We’ve been the first to say these past 10 or so months since we found out Pearl’s brain wasn’t formed properly that none of us know how God will work through someone’s body – either in a physical or spiritual sense. Many of Pearl’s doctors have agreed that while you can tell how something is formed, you can’t know for certain how it will function. These things are still true. We still do not know what Pearl’s body may or may not do or how long we will have her with us, but our hopes are slightly higher now.
We are still a happy family. Pearl is still a very-loved little girl. God is still full of love and mercy and grace and capable of miracles. We are blessed, and while I’m at it, I should let you know that her g-tube is working out great. She had a small infection early on from the surgery, but antibiotics took care of that fairly quickly. She’s even able to sleep through a lot of her feeds. We are so grateful for all of her doctors who encouraged us to go through with it, for an amazing surgery team for working so delicately and intentionally, and for this community of all of you who walk along side of us, always praying.
Thank you for continuing to be a part of this journey with us!