The week before Christmas, my oldest son Finn was unexpectedly hospitalized and underwent two surgeries. Not a lot of people knew about his history with hydrocephalus, so before I write about the shunt revision(s) that occurred last week, I want to tell the original shunt story.
In January 2004, my firstborn, Finn, was six months old, and we took him to the pediatrician for his six month check up.
The nurse weighed him, measured his length and measured the circumference of his head, all of which was normal for check ups, prior to seeing the doctor. After doing all that, she left the room to let the doctor know we were ready to be seen, but she returned a moment later.
She said she needed to double check Finn’s head measurement, that she thought maybe she wrote it down wrong.
I suspected nothing. Her writing down the wrong number seemed like a thing that could happen.
The pediatrician came in and did his exam, asking questions about how much he was eating and sleeping, checking his heart rate, etc.
And then it happened.
“I want to measure check his head measurement again,” the doctor said.
My heart sunk into my gut.
I knew then: something was wrong.
The nurse double checking was acceptable. But a third time? Something was up.
Something indeed was up. Finn’s head size — which had grown about 2 centimeters between the every other month check ups — had grown about 10 centimeters since we last saw the doctor.
How could I not have seen this, right? That’s what I asked myself. Well, when you see your child every day, all day, I just didn’t see it. He could hold his head up well, but he fussed after holding it up for a long while. He didn’t like tummy time and he wasn’t rolling over. These were indicators, but I justified that he was a big baby — which he was — 9 lbs. at birth and more than 20 lbs. at 6 months. He was laid-back and content not being mobile, I thought.
So back to the doctor’s office — our doctor said he thought Finn had hydrocephalus, which in common terms is water on the brain or fluid on the brain. It’s not actually water; it’s cerebral spinal fluid (CBF) which is the fluid that goes from the brain around the spine and back to the brain in a continuous cycle. In people with hydrocephalus, the fluid builds up in the ventricles of the brain, where the fluid is produced and absorbed, causing an increase in head size.
He referred us to a neurosurgeon who ordered an immediate CT scan.
My baby was so brave lying down in the big scary noisy machine. All during the scan his big blue eyes were looking straight into mine, as I was there holding his hand and offering shush-ing sounds and the occasional “you’re OK, mama’s right here” to keep him calm. He didn’t cry one bit.
The CT showed what the doctor suspected — Finn indeed had hydrocephalus. The surgeon explained that hydrocephalus has several causes — the brain can be overproducing or under-absorbing CBF, or the passageways that carry the fluid could be narrow somewhere along the path. Whatever the cause, the only “fix” is to place a shunt into the head to move the excess fluid off the brain and into the cavity of the abdomen.
So at six months old, he had brain surgery. The picture in this post was taken after he woke up from the surgery. He was a such a happy baby, before and after, and thankfully had no complications. Potential risks were that the shunt wouldn’t work, infection at the incisions, brain damage, etc.
After the surgery, all was well. Finn had some catching up to do with learning to roll over, crawl, and walk, but he caught up quickly to where he needed to be.
For all these years, if you didn’t know that Finn had a shunt you wouldn’t have known. He’s just like any other child his age, which not everyone with hydrocephalus is so fortunate. I receive the Hydrocephalus Association newsletter, which has stories sometimes about children who endure multiple complications and shunt revisions — when the shunt has a problem, the surgery to fix it is called a shunt revision.
According to the Hydrocephalus Association, 50 percent people with shunts have to have a shunt revision within two years.
We were blessed for nearly a decade to have no problems.
To be continued ….