We had our semi-monthly follow up with Little Miss Minion’s neurosurgeon a couple of days ago. Every few months, she goes in for an MRI and a follow-up office visit to make sure that her shunts are working and that everything with her ventricles looks good. At our last visit, we were cleared for six months instead of three. At this week’s visit, we were cleared for ONE FULL YEAR!
Everything on her scan looked perfect, and the neurosurgeon even said that this is the best scan she’s ever had. The small area we were watching, near her ETV, is draining properly and has gotten smaller.
So, hopefully, it will be another year until we have to see this particular specialist again. She could, of course, have a malfunction or failure in either of her shunts or the ETV, but barring something like that, she is in good shape!
He also said that the speech delay we are seeing could be due to the PVL (periventriculoleukomalacia–brain damage), or due to just having hydro, or from being a Preemie, or she could just be wired that way. We are still super early in dealing with the speech issues, and she has actually improved a little since we started following the speech therapist’s suggestions. More on that in another post.
I first became aware of hydrocephalus in July of last year. Little Miss Minion was still in the NICU and I had gone back to work to allow for time off once she came home. I got a phone call from one of the neonatologists telling me that they had done a follow up head ultrasound (standard procedure to check for brain bleeds) and that they had noticed enlarged ventricles. I was told that a specialist would meet us at the NICU that afternoon to talk to us some more about what that actually meant. I immediately went on break and looked up “enlarged ventricles” on my phone. I read about brain damage, developmental delays, seizures, and death. The images that the search turned up were of babies with basketball sized heads. When Mr Minion and I arrived at the NICU and met the specialist, we were in shock.
The specialist, who turned out to be a neurosurgeon, explained that the meningitis and sepsis that our daughter had survived a few weeks earlier had caused damage in her brain. Along with four tiny spots of periventricular leukomalacia (brain damage), the infections had blocked the third ventricle of the brain (which functions like a drain) and had also caused the brain to either create too much or not absorb cerebrospinal fluid fast enough, causing a buildup of fluid inside LMM’s brain. The only “cure” was to insert a man made drain into her brain: a ventriculoperitoneal shunt (VP shunt). This would become a pathway for excess fluid to drain out of her brain, where it would cause damage, and redirect it into a space near her stomach to be absorbed.
Our preemie, who weighed about 4 pounds at the time of her surgery, underwent her first brain surgery at just over 2 months old. A few weeks after she came home from the NICU, she needed another. A few weeks later, she had another. And a few weeks after that, she had one more. 90% of shunts fail within the first year.
Today, you would never know by looking at her that our daughter is a Hydro Warrior. The only physical signs are two shunts in the back of her head, now hidden by hair, some scarring where her ETV was done, and some scarring on her stomach from where the shunt drain portion was placed. All of the tubing is internal. However, we live in the shadow of Hydrocephalus. At any moment, her ETV could close. A shunt could become blocked or broken. She could get a shunt infection. Any of those things would be an emergency situation, requiring an immediate trip to the ER and would result in surgery. There is no way to cure hydrocephalus. There is only treatment.