Structural Changes After VP Shunt
We had been diligently working with Jess, talking to her all the time, working with her on reaching and crawling, and working on visual stimulation.
One of the things we were told was to use a lot of high contrast toys and pictures. We got some black and white toys to help with stimulation. The pumpkin in this picture was one of the things we used because of the simple design but sharp contrast of the black eyes, nose, and mouth. As you can see, she was making progress on her mobility, and had decided to check out the grass.
As I mentioned in a previous post, when our pediatrician let us look at the images of Jessica’s CT of her brain, her occipital lobes were all but non-existent. On the left side of her brain, the occipital lobe was not there, and also a finger shaped fluid filled area went forward from the occipital lobe on into a deeper area of her brain, potentially affecting her speech and language processing. On the right side of her brain, a large part of the occipital lobe was gone, but not as much as on the left.
When we had our follow-up CT, the results were unexpected to say the least. We really didn’t expect any significant change in the appearance of the cysts (that’s what they called the fluid filled areas). We were originally told that the areas were fluid filled because something had to fill up the empty space where the brain hadn’t developed.
But this is what we saw instead. On the right side, it appeared that most of the brain tissue was actually there. On the left, the size of the cysts was noticeably smaller. Even though this image is probably shocking for those who haven’t seen it before, it was such an incredible boost of hope and encouragement for us. What it meant was, there had been enough pressure in there to compress brain tissue. When the shunt was put in and the pressure was relieved, some of the tissue was able to decompress. Of course, we knew that tissue was most likely damaged, but at least it was there. On the left side, where there was still a fluid filled cyst, that meant the tissue missing there either atrophied before the shunt was put in, or it was never there to begin with. This is something we will never know and it doesn’t matter.
One thing we were taught was to watch for signs of shunt malfunction. The most common problem with shunts is that they can get blocked up, break or come apart. About 40 percent of shunts will fail and need changing (or revision) within one year, 60 percent within five years and 80-85 percent within 10 years.
Signs of hydrocephalus (or of shunt malfunction) in infants may include:
- Rapid head growth;
- Full or tense soft spot (fontanelle);
- Unusual irritability;
- Repeated vomiting;
- Crossed eyes;
- An inability to look up;
- Periods in which the baby stops breathing (called apnea);
- Difficulty swallowing;
- A hoarse or weak cry;
- Difficulty in keeping the infant awake; and
- Any worsening brain function.
Less common signs of a shunt problem include:
- Seizures (either the onset of new seizures or an increase in the frequency of existing seizures);
- A significant change in intellect, school performance or personality;
- Worsening arm or leg function
- Worsening speech or swallowing difficulties; and
- Changes in bowel or bladder function.
However, we were told that for Jessica, since she never really had any of those issues to begin with, she would probably not have typical symptoms of shunt malfunction. Oh, great… a total guessing game! From now on, a good reason to worry about every little potential change in anything and start wondering if could it be her shunt. For the most part, shunt malfunction = surgery for replacement.
What we did know was that the shunt was necessary. The pediatric ophthalmologist from Atlanta was right. And it most definitely helped and made a difference. The doctors agreed. But, memories of these dramatic changes faded over time. And there would come a time in the future when once again, the neurosurgeons would start doubting again whether or not there was enough extra pressure to pump any fluid out through the shunt. There were many visits to the clinic years later when the doctors would say they really didn’t know if that shunt did anything or not.
But we knew. We also knew that we would never give up, never stop trying, and never stop believing in her abilities and potential. We found our new normal. It was early intervention. It was physical therapy. It was occupational therapy. It was love and admiration and joy for all who met her and were lucky enough to spend time with her.
She was so much fun and a true blessing.
If you are new to Autism After School, Jess is an autistic and visually impaired young adult. I am telling our story to help other parents and professionals learn from our journey. My hope is to help others better prepare for experiences within the educational system and the transition to adulthood.