Journey to B.B., part 4


Since our daughter's diagnosis, we've gone from thinking she may not live, to she may be in a persistent vegetative state, to she may be slow but has the ability to learn. To hear that anything is wrong with your child (who despite not yet being in your arms, you love with all your heart) can be heart breaking, because we all want the best of everything for our children. 

However, since her diagnosis, 10 weeks ago (wow, I can't believe it's been that long), we gained some knowledge and I've gained some perspective. To have a child with a frontal encephalocele in the U.S. is rare. Most encephaloceles are occipital, which means that they are at the back of the skull. Occipital encephaloceles can have as much as almost the entire brain in them and can be fatal. Where as most frontal encephaloceles are smaller and it's rare that they're fatal.

After joining a Facebook group of families of encephaloceles, I've learned a lot and am very grateful that my daughter's condition is not worse and am excited for her future. There are families expecting babies with occipital encephaloceles who can merely plan for the few hours they'll have with their child before they go to be with Jesus. I thought BB's diagnosis was devastating at the time because of the grim prognosis we were initially given, to have to plan my child's funeral before she's born just blows my mind. The amazing strength and support this group offers everyone is fantastic! Doctors are not always the most educated on every condition. Many families have been told their child wouldn't live, but years later are posting pictures on this group of the new skill their child learned to accomplish. This group helps to give hope and help to educate and support families of encephaloceles. It's just a little Facebook group but it's given me a connection and information that was nowhere else out there.

Grateful for that group and excited for my daughter. :)

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