Jess needed surgery, but the neurosurgeon wasn’t on board…
We were lucky. Our pediatrician was as fierce of an advocate as there ever could be. She didn’t back down and the neurosurgeon agreed to perform the surgery. Jess was admitted to Children’s Hospital on February 11, 1988 with a Ventriculoperitoneal shunt placement scheduled for the next day. The diagnosis of blindness, the CT, the eye exam, and scheduling surgery, all had occurred in just over a week.
I won’t be sharing details of when they came to get her to take her to surgery because I have no memory of that at all. There is only a vague memory of sitting in the rocking chair in her room at the hospital and getting a call with an update. Everything went fine during surgery.
Afterwards, the Neurosurgeon came to talk to us. He almost seemed mad, as if he felt pressured into the surgery and was mad about it. His basic comment to us was, ‘Well, it’s in there (the shunt). I don’t think it was needed, and I don’t think it will change anything.’ He then explained that she would be followed long-term by the The Walter E. Boehm Birth Defects Center and someone from there would come talk to us about it. I have to go ahead and say, during subsequent visits at the clinic, this same doctor absolutely fell in love with Jessica (of course) and was quite intrigued by her. He quickly completely changed his opinion about the shunt making a difference.
After talking to the Neurosurgeon, I remember going to recovery to see her. All of it felt so surreal and was really distressing. In recovery, she was laying in a little bed, still very sedated, but crying anyway. The kind of cry that made it seem like she had been crying a long time. I wondered how long she had been crying. Was it because she was in pain, scared, or just because of the sedation? Not knowing made me ache. I wanted to hold her but couldn’t yet.
She had three incisions. One on her scalp, one behind her ear, and one on her abdomen. Her head was wrapped up in a bulky dressing.
Being as cute as she was already, could it be possible that she was even cuter with the dressing on her head?
The dressing didn’t have to stay on long. Once it was off, we saw an almost ½ shaved head, a relatively small incision, and what looked like a huge lump under her scalp. For a while, it looked very prominent. But, as her head grew and her hair grew back, it wasn’t noticeable. There were many times, though, that people would incidentally feel of her head and then tell me in alarm that she had a huge knot on her head.
Time to go Home
Before we were discharged home, we were visited by representatives from the The Walter E. Boehm Birth Defects Center. What a wonderful blessing! We will be eternally grateful for all they did and continue to do for Jessica and other children. They are a non-profit organization located at Erlanger’s Children’s Hospital in Chattanooga, Tennessee. which provides a comprehensive, multi-disciplinary medical program for children born with congenital birth defects of the central nervous system, including spina bifida and hydrocephalus. The physicians volunteer their time, and the center offers the medical, financial and psychosocial services that patients and their families need. For us, it was always a great comfort knowing that if Jessica were to have complications with her shunt, we didn’t have to worry about the burden of mounting medical bills. She has seen a neurosurgeon for a checkup every 6 months for most of her life.
This picture was probably taken about two months after surgery and the shunt is still quite visible.
Did the Shunt Make A Difference?
As sometimes happens with major personal events, the world temporarily grows small and the everything seems to revolve around our own little world. The outside world seems to fade for a while. For the next few months, we worked on finding our new normal. We have a very large and close extended family. Part of our long time normal was getting together with family for special events, birthdays, etc. We had one such occasion within a few months of surgery. During this party, we had the joy of witnessing the first encouraging and exciting moment that we had experienced since we had heard the devastating diagnosis of blindness.
Jess turned her head toward it…and she REACHED for it! It probably caught her attention because of all the reflections of light in the balloon. It was the first thing that she could see. We were overjoyed!
Maybe that shunt was making a difference after all…