Amelia's Story

I will start from the beginning since some of you have not been apprised of our situation. We were told last week that our baby @ 35 weeks had a major heart defect and was @ the 10th percentile for gestational weight. So we were told to prepare for Down Syndrome. This was something that Misty and I were not ready for but over the weekend had bought a book and had started researching all of the wonderful help/options there are in Birmingham to help raise a child with Down Syndrome. Then we got the results back from our Amniocentesis and we learned of Trisomy 18 for the first time. We were informed Monday evening that our baby has Trisomy 18 which is a very lethal mutation of the chromosomes. 90% of all babies born do not live to their first birthday. Everyone involved truly believes that if our baby makes it to full term that she will not make it out of the hospital. By the way we were not going to find out the sex until all of this happened. But I remember Misty saying last Friday during all of our sudden Doctor appointments that she did not want any more surprises.

We are scheduled for a C-Section August 11, 2009. The OBGYN agreed with Misty and I that the best thing to do is go ahead and deliver the baby. No one can tell us how long the baby will live of course so we will be able to understand that more fully next Tuesday. There is a great chance that her little brain will not be developed enough to even tell her lungs to take a breath. The biggest thing we are finishing up now is the directives that we have to have in place when we walk in St. Vincent’s next Tuesday morning. Our pediatrician has surprisingly been a great resource here in the 11th hour to make sure our wishes for our daughter are carried out once she is born. We have an incredible team assembled and there will be 5 – 6 Doctors in the room during the C-Section.

The greatest hurdle in our minds right now is how to help Ben, our 4 year old boy, deal with all of this. Just this morning he woke up telling us what all we are going to do with the baby once she is born. The biggest thing I would like to get accomplished now is to meet with some Counselors at the Amelia Center. This is a fabulous resource @ Children’s Hospital. The Director founded the organization when his daughter passed away at a young age and his family realized that there was no where to turn to help young siblings grieve. They have agreed to help Misty and I with a “crash course” of how to prepare Ben to deal with this. That is our greatest prayer right now is how to involve him especially if the baby lives to come home. Which is also a possibility albeit a very small chance.

Please continue to pray for us as we face some very difficult times ahead.

Robbie and Misty Hillis