At 31 weeks gestation, a perinatologist detected enlarged ventricles in Joanna’s brain (ventriculomegaly) during a routine ultrasound. So, 16 hours after her birth, Joanna had an MRI to rule in or out hydrocephalus and the need for surgery to install a shunt. The MRI showed the reason for the ventriculomegaly was agenesis of the corpus callosum (ACC). We had no idea what that meant, but thought that it must be good news because Joanna would not need to have brain surgery. At the time, we thought anything would be better than brain surgery.
Joanna developed normally and even a little ahead of typical milestones until she was 2 months old, when she had her first seizures. An EEG showed a pre-hypsarithmia pattern which was described by her pediatric neurologist as "a mess." She was prescribed Phenobarbital which stopped the seizures for 3 weeks, then the seizures broke through and she was admitted to the hospital for 10 days. During this stay, Joanna was diagnosed with Aicardi Syndrome by a geneticist. He told us (without much sensitivity) that she would never walk, never talk, probably be unable to learn or recognize her parents, and would live to be 10 or 15 "if we were lucky."
Within minutes of the geneticist’s departure from Joanna’s hospital room, her pediatrician called to check in on us. We told him what we had just heard and we all cried. To this day, we hold on tight to what we talked about during that conversation: that Joanna was not her diagnosis - she was the same beautiful daughter that we loved with all our hearts. Nothing would ever change that.
During the months that followed, all that seemed to register with us were the things that Joanna would never do, all the developmental milestones that she would miss. We prayed that she would hold her walk, talk, feed herself, or hold a toy. She still can’t do any of those things. However, the grief of “losing” the daughter we thought we wanted has been replaced with the joy of unconditional love and the thrill of little victories.
Joanna thoroughly enjoys her life. She especially loves going to our local elementary school (in a regular classroom with a one on one aide), relaxing in the pool, going on walks, listening to music, cuddling, and being a big sister to Adam and Aaron. There is nothing better in the world than to see her beautiful smile! She is experiencing her best seizure control yet with a combination of the VNS, Lamictal, Vitamin B6, and Banzel. Other than some pesky GI issues and seasonal allergies, she is in great health.
We still don't know what skills she will master in her lifetime, but each day it matters less. We are overwhelmed by how much we love this child and how much joy and happiness she brings to our lives. Now we pray for only two things for Joanna: that she be happy (i.e. healthy and comfortable) and that she knows she is loved. We can’t imagine our lives without her and we thank God everyday for the precious gift he gave us.
01-10-2010
