As good as that moment felt it would all come crashing down when she asked," When is your 20 week anatomy scan?" That's when my wife and I found out our little girl had probable ventriculomegaly and possible hydrocephalus. Hydrocephalus means that the shock absorbing fluid canals in your brain are not draining correctly.
Now, I want you to imagine again, the fear, anxiety and anger we felt as parents as we learned of our daughters neurological conditions. The shock and sadness as we got the confirmatory ultrasound the next day. The moral dilemma as we learned that not only did she have hydrocephalus but a cerebellum(part of the brain involved in movement planning) that was roughly 10% of normal and partially absent, a Dandy-Walker malformation (a cystic/fluid filled space in the back of the head) and finally an absent corpus callosum(the structure that allows the two hemispheres of the brain).
Paige and baby Adelynn went through 6 ultrasounds, a fetal MRI, amniocentesis, a FISH study and micro-array (to try to determine a genetic cause), blood work for a possible infectious cause, a cosultation with a geneticist, expert opinions from one OB/GYN, two fetal/maternal monitoring physicians and a neonatologist.
We then had to sit in a room and listen how our daughter had a poor chance of ever being able to walk or talk. She would spend several weeks in theNICU at the minimum. We would have to go to Iowa City or St. Louis to have her born, several hours away from family. She could very well experience more pain and suffering than joy in fact it was probably. This, of course, was if she even made it to term. All four of the specialists concurred that the prognosis was very grim.
Therefore at twenty two weeks at 11:10 P.M. our beautiful girl Adelynn Paige Binkley was born. She was with us for 1.5 hours before she passed away. She cuddled with her parents and grandparents the entire time. She will be remembered by her loved ones, especially her eldest brother who still tells everyone," My sister's name is Ms. Adelynn and she's in heaven."
All proceeds will be applied to Ms. Adelynn's medical bills and the remainder will be donated to March of Dimes in her name.