January 7, 2008 - Baby Arielle update

"Every baby is a blessing." - Author unknown

Quick recap: At our 20-week sonogram in early October, it was discovered our daughter's brain wasn't forming properly. The initial diagnosis was hydrocephalus, but a subsequent MRI determined the main pathway that connects the two halves of the brain didn't form. It's called complete agenesis of the corpus callosum, or C-ACC.

We're happy to report some positive developments over the past month...

Two key visits
Our most recent sonogram appointment on Thursday revealed that not only have the enlarged ventricles with the excess fluid remained stable, they now measure NORMAL. The sonogram technician didn't even think she was getting accurate images at first based on Arielle's charted history! Additionally, her head circumference, which has consistently been above the 90th percentile, has also fallen smack dab in the middle of the NORMAL range.

These developments are positive, as they mean there's likely no additional pressure on her brain and we're more likely to be able to have a normal delivery. Had her head remained anywhere above the 80th percentile, our OB/GYN was recommending a C-section.

Just before Christmas, we were finally able to get an audience with our new neurologist with Dell Children's Medical Center here in Austin. We spent more than a month and a half on a waiting list being told we were a top priority for a cancellation slot that would seemingly not come. A friend/board member got wind of our situation, and within days, an after-hours appointment was created on our behalf. We're grateful beyond words to that person for the behind-the-scenes nudge.

The visit was incredibly productive, informative and helpful. The doctor was able to answer a long list of questions we had prepared, or in some cases, explain why an answer wasn't known. The neurologist recommends moving forward as you would with any newborn, as Arielle's early life needs likely won't differ from other children's. Mary Alice had intended to continue working part-time from home, and he didn't see any reason for her not to progress as planned.

Grateful to know
One of the more interesting things we learned from the most recent doctors visits is C-ACC is most often NOT diagnosed before a child is born. In our case, the enlarged ventricles and excess fluid acted as a tip off to warrant an MRI. Ironically, it is those very two things that are now normal.

We assumed because a sonogram helped us with a diagnosis, the same held true for others. So we asked the neurologist what the latest stats were for prognosis now that detection was more common than say 30 years ago (What percentage of kids lead normal lives? Experience minimal impairments? Suffer more severe problems?). The reality seems to be experts don't really know because more often than not, it isn't detected in the womb...so most aren't tracked since birth. That's also why it's commonly misdiagnosed as other conditions, like autism.

We feel all the more grateful to have an accurate diagnosis as we know this increases our awareness, knowledge and ability to best care for our daughter. While nothing "corrects" C-ACC, individualized therapies have been proven to help.

Focused hopes/prayers
Many of you have been very gracious in offering prayers and other demonstrations of support, or asking how you can help. We're mindful that within our audience are people from a variety of religions, or lack thereof, but we share a common intention that our daughter will lead a healthy and productive life. We are convinced all the positive energy has helped our spirits remain high. We furthermore credit all of you and the good Lord himself with the latest progress Arielle has made.

With that in mind, we ask everyone to keep up whatever it is they're doing with the following intentions in mind:

  • That Arielle's ventricles and head size remain normal in size.
  • That the two hemispheres of Arielle's brain find other ways to communicate without the pathway its missing (it's unclear why, but some brains seem to cope/compensate better than others).
  • That Mary Alice's challenges with anemia and fatigue not worsen (doctors were never able to get it to improve, and it's known for worsening near the end of the pregnancy).
  • That we're able to find an experienced pediatrician for Arielle. The one the neurologist recommended no longer accepts new patients with our insurance, so our quest on that front continues.
  • That delivery goes smoothly. Only six weeks to go!

Thanks to you all once again. Our next update may very well be a photo upon delivery.