The Diagnosis

I believe it was right before Christmas, in 2009, that I took S to her 6 month well baby check up. Up until that point, our check ups had been normal and right on par for her age. Something different happened that day.

It started with the usual weighing and measuring. Dr. P asked if I had any concerns, and at that point, I didn't. He did an overall exam, and then started jotting things on her growth chart. And then he stopped. "I'd like to measure her head again," he told me. I just assumed, as he had, that he wanted to make sure he'd written the correct measurement. He had, but that was where the concern came in. He told me that her head circumference was measuring a little larger than he would expect. The rate of growth seemed to be a little faster than normal. To be cautious, he told me he was going to order a head ultrasound, just to take a quick peek. He mentioned that I had a large forehead (uh, thanks?) and that it could just be hereditary.

S's head ultrasound was scheduled for January 12th, exactly 7 months from the day she was born. Of course, the techs can't tell you anything. They look for what they're looking for, they consult with a doctor, who also doesn't tell you anything, and then they send the report back to your doctor. I had no idea what we were dealing with. The ultrasound itself didn't take a lot of time. S was very squirmy, as any 7 month old child would be, and the pictures weren't as clear as they'd hoped because her fontanel (aka soft spot) was very small. They couldn't really tell me anything. So we went home. And that afternoon, maybe an hour after the ultrasound appointment, I got a call from Dr. P. I had never, ever, gotten a call from him. He told me, over the phone, very matter-of-factly, that my daughter had hydrocephalus. For those who don't know, hydrocephalus, also called water on the brain, is a condition where, for whatever reason, the cerebral spinal fluid isn't draining adequately from the brain. In a "normal" system, CSF travels up the spine into the brain and then back down the spine. In people with hydrocephalus, this "drainage" is somehow slowed or blocked altogether.  Sometimes this is caused by a major head trauma or injury. Or, as in the case with my daughter, it is something one is born with. In some cases, usually more severe, this condition can be diagnosed in utero. In others, it is not diagnosed until 1 year or beyond.

What did this mean for Seylah? Well, at this time, they still felt that it wasn't emergent. A referral for an MRI was sent out, and in the meantime, we waited. Dr. P gave me a list of symptoms to watch for: dizziness, lethargy, vomiting, a bulging fontanel. If I had any concerns, I was to call right away. The MRI was booked for February 9th. Again, we had nearly a whole month to wait.

In the month we had to wait, I started noticing small changes in S. She had been able to sit up on her own at around 6 months, but now, at 7+ months, she was losing her balance a little. She hated being on her tummy. She wanted to be held all the time. She started to hate diaper changes. I had no idea what this all meant. I think I called the doctor to ask about them, but because they weren't accompanied by vomiting or a bulging fontanel, he didn't seem concerned. I watched my baby not progress in physical milestones.

The MRI was much harder than the head ultrasound. S was almost 8 months old, and couldn't be expected to remain still for 15+ minutes, and so she had to be sedated. This meant fasting, getting an IV, and being put under general anesthesia. Fasting was hard. She was still nursing every 2-3 hours, and she had to be clear of fluids for 4 hours prior to her appointment. She was so cranky in the waiting room. When we were called in, they looked at her veins, and I told them that, like me, she had very thin veins, making it hard to get an IV placed. They agreed that we could use the gas first to put her to sleep, and then they would put the IV in to ensure she stayed asleep for the whole procedure. I was able to walk her into the MRI room, and I was the one to put the mask on her face. That is probably one of the hardest things I parent has to do to her child. I felt her quickly get limp in my arms, and I cried. The nurse took her from me and laid her down, and they told me to go wait in the waiting room or take a walk or something, and that they would come for me after she was put in the post-op room. My aunt came with me, and she took me for something to eat. We went back, and I could hear crying, and I just knew it was her. I rushed to her bed. She was coming out of the anesthesia already and was upset that I wasn't there. I was able to nurse her, and then they took her IV out, and then I nursed her again. She was monitored for about an hour before they signed her release. She had come through everything well. We were sent home to wait on results.

The next day, February 10th, we saw the neurosurgeon, Dr. M. He explained to us that S did, in fact, have hydrocephalus. He told us that there are four ventricles in the brain that are filled with CSF. In S's case, all 4 ventricles were about 4-5 times the size they should be for her age. He said that they should normally be about the length and width of an adult thumb, and they were more the size of a small fist. Maybe that's more than 4-5 times the size. He said, given the information, her best bet was surgery. I asked him what would happen if she didn't have the surgery. He said that if the ventricles continued to grow, they would start to put more and more pressure on her brain, causing brain damage. The extent would depend on where the pressure was placed. We went through what the surgery would entail. A small incision close to the base of her skull on the right side, behind the ear, would be used to place the shunt inside one of the ventricles. From there, a thin tube would run under her skin down into her abdomen, which is where the excess fluid would drain, in her abdominal cavity. The type of shunt used for S is called a Strata Valve. This valve is "programmable", in that there are multiple settings controlled by a magnet. These settings can increase or decrease the flow of CFS. The higher the setting, the more force it takes to direct the CSF out of the brain, meaning less drainage. The benefits to this shunt are that they will not need to replace it if there is not enough (or too much) CSF draining. The tube that was run from the shunt to her abdomen was made of a certain length so that as she grows, she will not need subsequent surgeries to adjust to her growing body. There is enough tubing in her abdomen to continue to drain as she grows up. What this means for her is less surgeries throughout her life. She would only need surgery if, for some reason, the shunt malfunctioned (got clogged) and was no longer draining CSF, or if she were fighting off an infection and it started attacking the shunt, or if she started experiencing abdominal pain that might be linked to the drainage site. However, if it is found that her brain starts absorbing the CSF at a normal rate, and there is no longer need for a shunt (apparently this is very rare), this would not be reason to do surgery. They found that going in to remove a shunt that was no longer needed was more risky than just leaving it in there. He pretty much told us that she will have this thing in her brain for the rest of her life.

All of this information was so hard to process. Wayne and I sat there and cried, while the doctor told us that this was actually caught in the early stages, and the chance that it caused neurological damage was pretty slim. He said that this was not considered an emergent case, but that she would need surgery "soon". How soon, we asked. He sent his nurse to check the OR availability. Next week, they said. He asked if we wanted to talk it over and get back to him. We looked at each other and said no. If this is what she needed, then this is what we'd do. S's surgery was booked for February 16th, 2010.