Our Journey as Special Needs Parents - Shunt Surgery

Taking David home was exciting and nerve racking at the same time. Not only was the task of caring for this special little boy daunting but I was a new mom as well.  I had all the same fears that everyone new mom goes through. I didn’t really have any experience caring for an infant.

When we brought David home he still had bandages on his back from where they closed up the opening in his back. The bandages had to be changed regularly and that was scary for me. Of course every time he pooped it would get in the bandage and it had to be changed even more then I had anticipated. His poor skin was so sore where the adhesive from the bandage was. That part looked even more painful then his stitches.

But the part that was even harder to adjust to was his shunt. As I mentioned in a previous article David has hydrocephalus. Hydrocephalus is a harmful build-up of cerebrospinal fluid (CSF)Cerebrospinal fluid (CSF)A clear fluid made in the brain’s ventricles — the four small pockets in the brain. CSF flows from the ventricles, through the brain and into the space around the brain and spinal cord. It bathes and protects or cushions the brain and spinal cord. in the ventriclesCerebrospinal fluid (CSF)A clear fluid made in the brain’s ventricles — the four small pockets in the brain. CSF flows from the ventricles, through the brain and into the space around the brain and spinal cord. It bathes and protects or cushions the brain and spinal cord. of the brain. CSF is a clear fluid made in your ventricles. It bathes and protects your brain and spinal cord. Normally, CSF flows from the ventricles, through the brain and into the space around the brain and spinal cord. A child’s body is always making and absorbing CSF. When the CSF cannot flow or doesn’t get absorbed the way it should, the CSF builds up. This is hydrocephalus. The build-up puts pressure on the brain.

David had his first shunt placed when he was just 3 days old. However, the first shunt never seemed to work correctly. The spinal fluid was supposed to drain through the tube that was placed in the ventricles in his brain and ran down his neck and into his abdomen. The fluid that came out of the tube would be absorbed into his abdomen. Instead of flowing through the tube the fluid was draining down the sides of the tube.

The advice we were given was to keep a close watch on his behavior. If he was sleeping more than usual, became lethargic, started crying inconsolably or projectile vomiting to call the doctor. So of course we were on hyper alert all the time. We were also told keep an eye on the soft spot on the top of his head. We were to feel it often and make sure it was not protruding which would be a sign the CSF was building. Not long after getting home we were checking his soft spot and it was not protruding but actually the exact opposite. It was so stuck in that it was very scary. No one had said anything about what to do if that happened. So we very quickly called the neurologist. He assured us that this was ok that it actually meant the pressure was just a little low. That momentarily put our minds to ease but made us realize how many things there were that we had to learn.

Over the course of the next week things didn’t improve with David’s shunt. We remained constantly concerned and watching for any changes. As I was putting him down to bed one evening I noticed that the place where the shunt was now laying flat. I felt his head and could not feel the tube. Once again we frantically called the neuro. He seemed to think that we were probably just mistaken. But because he was a wonderful doctor who always took a parents intuition seriously he agreed to meet us at the emergency room. When we arrived at the hospital our doctor was already there waiting for us. We didn’t even check into the emergency room he took us into the observation room to take a look at David. He took one look at him and said we need to get him into surgery.

The next few hours were a whirl wind. Our newborn baby was taken from us and rushed into surgery. After what seemed like an eternity we were taken to see him and given a room on the pediatric floor. The doctor had decided to pull the shunt back up and just reattach it. As amazing as it sounds shunt surgery is serious but so common for children with shunts that we were released from the hospital the very next day. Our issues with this shunt did not end there. Unfortunately it still never worked quite right. A month later we were back in the hospital. This time the doctor decided to replace the entire shunt.

 

Our Journey as Special Needs Parents - Meet David

The rest of my pregnancy was relatively uneventful. I was not even considered high risk. Other than monitor his development by ultrasound all we could do was wait and pray. Which was very hard to do. So we tried to do the things typical first time parents do like going to birthing classes. But everything was just a little bit different for us even then. We didn’t get a tour of labor & delivery as we already knew we were having a scheduled c-section, so all the necessary doctors would be available. Instead we got a tour of the NICU. We met with the wonderful people at the Spina Bifida clinic and they gave us a lot of support. But the one thing I was searching for I could not find. I wanted to meet and talk to another family with a child with Spina Bifida. 

From the ultrasounds the doctors could see that our baby had hydrocephalus and the pressure was increasing from the spinal fluid building up in his head. So the doctors decided that in order to possibly prevent brain damage from the pressure it was necessary to take the risk of a premature birth. So 3 weeks early, on March 10^th, 2004, David Joseph Sites was born. It was so wonderful to finally meet him in person after months of seeing ultrasound pictures of him. But I don’t think I really understood that this was really just the beginning. I thought once he was born and we could actually do something to help him things would just somehow be all better.

Honestly, I don’t remember much about the first few days of David’s life. I was recovering myself from the c-section. When David was born I didn’t get to see him right away. Joe was able to cut the cord and told me he was beautiful and then they whisked him away to the NICU I was taken to recovery. After a few hours they pushed my bed into the NICU and it was then that I was able to see my baby for the first time and touch his precious fingers. My parents came in to see him with our priest who prayed a beautiful prayer and baptized him.

I was taken back to my room then and I don’t remember anything else about that day. The next day David underwent his first major surgery. He had the opening in his back, where the nerves were exposed and protruding closed. All kids with this form of Spina Bifida have this surgery shortly after birth. The doctors kept an eye on the pressure in his head from the spinal fluid building up and decided he needed a shunt. So on the second day of his life David was taken into surgery again to have the shunt placed. The shunt is a tube that drains the spinal fluid from his brain to his abdomen where it is absorbed by his body.

Joe went down with him to get him ready for his surgeries as I was not able to get out of bed yet.  But I really didn’t understand at the time how serious these surgeries were. While they are routine for Spina Bifida babies they do pose risks, as all surgeries do.

Since I had not had the opportunity to meet with any families of children with Spina Bifida before David was born I didn’t really know what the surgeries meant. I knew practically as they had been explained to me by doctors but not emotionally. I was not prepared to see my baby lying in the NICU with tubes and cords everywhere. So many strange noises and smells. Having to have faith that the doctors and nurses caring for my son knew how to take care of him.

When David was 3 days old I finally got to hold him. While it was one of the most special moments of my life honestly I was terrified. David was my first child and I was nervous enough about being a mom never mind one that needed as much care as he did. I was so afraid I was going to pull one of the tubes out. He seemed so fragile.

With every passing day he seemed to get stronger and was doing better then anyone had anticipated. David was a fighter from the very beginning and a good eater. He was gaining weight and doing so well that after only 8 days we were able to bring him home. Once again I thought the hard part was behind us. Little did I know taking David home was just the beginning of the adventure. An adventure that I was starting to understand would last a lifetime.

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.