Hope and I went and saw her new neurosurgeon today, and I've got great news to pass along! I'll start with a little bit of the back story, and then you'll think the news is just as great as I do :)
Since having her encephalocele removed, the only complication that we're looking for with Hope is hydrocephalus. Hydrocephalus is the enlarging of the ventricles of the brain (the spaces in the center of your brain where fluid is stored) due to an excess of cerebral spinal fluid. When this enlargement happens, the outer parts of the brain get smashed up against the skull, causing tissue loss and brain damage, usually global damage (involving everything--both physical and mental damage). The way that you can tell if someone has hydrocephalus is by looking for several warning signs: crankiness or changes in behavior, headaches, sleeping a lot, memory loss, eyes constantly looking down (sunsetting eyes), and forehead bulging (frontal bossing). In babies, because their skulls have not hardened yet, the first warning sign is often an extreme increase in head circumference, sometimes with few of the other signs. The only real way to tell, though, is to have an ultrasound done, or an MRI, which is much more precise. Hope and I had an MRI done before she was born, and then she had one done the day she was born. Since then, we have had 3 ultrasounds done, the last one being in November.
The treatment for hydrocephalus is to put in a shunt, a small tube that snakes between the lobes of the brain into those ventricles to drain the fluid. A tube then runs just under the skin of the neck and down into the abdominal cavity to drain that excess fluid. This surgery is life saving. A shunt will allow somebody who would otherwise suffer extreme brain damage and then death to have a long, normal life. But, the surgery itself is dangerous, with a higher mortality rate than the surgery Hope had to have her encephalocele removed. The shunt will also need care and replacing every decade or so. They can fail and they can become infected. Much like a lot of modern medicine, they are wonderful if you really need one, and a really bad idea if you don't.
In the 4 weeks after Hope's surgery, her ventricle size remained unchanged, which is when Dr. Young in Indiana told us that it was very unlikely that she would develop hydrocephalus and need a shunt. He said at that time that if she had hydrocephalus, it would have shown itself in that first month after surgery. We thought it was nothing less than a miracle that she would not need the shunt surgery, and were elated.
Then we moved and got a new doctor. We have spent the past 8 months being told something different every time we saw this woman. Based on her charting of Hope's head circumference, she was initially very concerned about hydrocephalus and encouraging an MRI to see what those ventricles looked like. Over the next few visits, she continued in this same vein, but each time the story was a little different. In December, I was told that Hope would likely need surgery in the spring, and that the doctor (in her brief office evaluation) saw sunsetting eyes and frontal bossing. She said that Hope's difficulty rolling and moving her head were due to the increased weight of having all that extra fluid in there. Then, in February, she said that the frontal bossing was mild, and hydrocephalus unlikely. All the while, Hope's head circumferences, which I was also taking at home every week, were hovering around the 90th to 95th percentile.
David and I were very uncomfortable with her waffling, her quick office evaluations of Hope, and her brushing aside of my concerns. We saw none of the external signs of hydrocephalus. Her eyes looked fine to us. Her head is funny shaped, but that can be explained by the fact that she has a very flat side from being positioned on one side for a long time. She was not losing ground developmentally, she was sleeping a normal amount, and she was not cranky. Her head is hard to hold up because she had all the muscles across the top of her neck cut! We really struggled with the idea that we would jump into surgery just based on a head circumference. The doctor told us to plan on doing an MRI in April, which we were fine with--after all, that would provide us the numbers that we need to compare with the MRI done at her birth.
After all this frustration, we also came to grips with the fact that she was not covered by our insurance, and that our insurance was not going to make an exception for us. That gave me the excuse to go out and find another doctor. I did some googling (since our doctor's office would not give us a name of another doctor, instead insisting that somehow, some way, our insurance must make an exception for us), and called a pediatric neurosurgeon at Columbia's medical center in the city. I explained our situation, and they got me in at a satellite office here in New Jersey that the doctor visits once a month. Hope and I went this morning, armed with reports from her birth and surgery, pictures, and copies of her MRI and ultrasounds on CDs.
The doctor was wonderful. His name is Dr. Feldstein, and he's an older man. He came out into the waiting room to get Hope, and then carried my bag for me while I carried Hope back to his office. He sat me down, asked questions about her history, writing down the answers by hand on a piece of paper. He then pulled up her most recent ultrasound on his laptop and walked me through the pictures. Then he measured her head. I watched, and he got the same measurement that I had been getting. He sat down and plugged it into his head circumference chart. He looked up at me, took her head circumference again, and then asked a few more questions about where the percentiles have been in the past few months. I told him how they had been at 40 when she was born, but had jumped up to 90 at some point, and stayed there ever since. He looked at his chart again, and said, "My calculations say below the 50th percentile. There is no way I would do shunt surgery on a baby with a head that small." I tried not to let my jaw hit the floor while he explained that there are several different manufacturers of these head circumference percentile charts, and with numbers this small, sometimes the variation is just that much.
I almost cried right there. I still feel pretty stunned. I asked him a few more questions, and he confirmed everything that David and I have been thinking. She is showing no signs of hydrocephalus because she does not have it. Dr. Feldstein even walked me through her ultrasound--showing me how her ventricles are large, but no larger than when she was born. They are not getting progressively larger. In fact, there is enough fluid around the exterior of her brain to indicate that there is no brain smooshing happening. He said that this is consistent with what he has seen in encephalocele babies--sometimes they just have a little bit more fluid in there.
He explained that he wants to see her about every 4 months for the next two years, just to check her, but that it is extremely unlikely that she would develop hydrocephalus. At age 3, he would consider her out of the woods. He started to walk us out the door, but I stopped and asked if he would like to have an MRI done, since that is what our last doctor had been recommending. His response? "I see nothing to indicate that there is anything wrong with her. Unless you and your husband have a strong desire to have the test done, I see no need to subject her to the dangers of the sedation and cost to do the test."
What an answer to prayer! I know that many of you were praying for us today, and I hope that God was glorified by showing Himself merciful to us. We have struggled to find doctors that we feel are actually concerned about Hope. More often than not, I have felt much closer to a cog in a machine than a person with a real, potentially life-threatening problem. I am so, so thankful for the visit today and the way God opened to door to find this doctor. David and I feel encouraged in our resolve to, in a sense, guard Hope from the medical profession. We are her parents, we know her better than anyone, and she was a heavenly gift to us. We may not have medical degrees, but we pray for wisdom regarding her and will continue to fight for her best interests. We thank God for our sweet baby!
