Our Journey as Special Needs Parents - Pregnancy

I hope to be writing a series of articles over the next few months about our journey as parents of a special needs child.  So I guess the best place to start on that journey is at the very beginning. 

It was halloween 2003 and I was sitting at my desk at work when I got the phone call that changed our lives forever.  Earlier I had a normal prenatal checkup and the doctor ordered the typical testing done at 16 weeks gestation.  My doctor called to tell me the AFP tests had come back elevated.  She tried to be reassuring that sometimes this happens and everything is fine, but she wanted me to have an ultrasound just to be sure, today!  She told me the baby might have Spina Bifida.  I had never even heard those words until that moment.  I had no idea what that meant. But there was no time for research at that point.  So I picked up my husband and we headed to the ultrasound.

The technician did her best to be friendly and conversational but we could tell by her face that something was wrong. Before she left the room to get the doctor she shared with us the wonderful news that our baby was a boy.  The doctor came in a few minutes later and confirmed our fears. Unfortunately he didn’t offer us much in the way of support or information. He told us we had the option of terminating the pregnancy or he had heard of a study in Philadelphia for pregnant moms of babies with spina bifida.

With our minds still spinning over what had just happened we had one of the most important conversations we would ever have in our married lives on the way out of the hospital. My husband asked me if I would ever consider terminating the pregnancy and I said no. I asked him if he would ever and he said no. With that settled we went home to share with our family the news and decide where to go from here.

Since we didn’t have much else to go on we decided to look into the MOMS study (Management of Myelomeningocele).  Before we knew it we were on our way to the Children’s Hospital of Philadelphia (CHOP). We stayed there for 3 days and underwent extensive testing and evaluation. It was there that we learned that our son, David, had the most severe form of spina bifida, myelomenigocele, which occurs when the meninges push through an opening in the back, and the spinal cord also pushes though. As with most babies who have this type of spina bifida David also had hydrocephalus, an accumulation of fluid in and around the brain.

Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.

In David’s case the opening was fairly low on his back and therefore he had a pretty good prognosis of being able to walk and maybe even run.  Taking part in the study meant we could be chosen for the surgery where doctors close the spina bifida defects while the baby is still in the mother's womb. After this surgery I would be required to stay on bed rest of the remainder of the pregnancy and the risk of premature labor was very high.  As with many things in life there was no quarantee that the surgery would even help our son and might possibly make things worse if he were to be born very premature.  Armed with the information they had shared with us we decided not to take the risk and started the long ride home.