Monday, April 21, 2008

Tiny Miracles

Sometimes I feel like I'm a brain expert after all the learning we've done since my nephew was first conceived. Anyway, when Drew was only a few weeks in the womb, they did an ultrasound and found an anomaly in his brain. Soon after, they sent my sister in for an MRI and took pretty detailed pictures of his entire brain. After that, he was diagnosed with Dandy Walker syndrome, which basically means that he was missing certain parts of his brain (the vermis, which connect one hemisphere to the other) and others were VERY underdeveloped (the cerebellum, which basically controls motor function). Those things would be problems his whole life, they said. She would just have to find a way to work around them, and no one had any idea what this would mean.

At the time, my sister's only reaction was this: whatever it is, I don't care as long as the baby lives. She could deal with anything except losing him.

When he was born, they performed another MRI to the same basic results. The only difference was that they saw the vermis did exist; they were just few and underdeveloped. The neurologist said that from this point forward, we would just have to play a waiting game. We went in for checkups. He was poked and prodded, and made to sit up just to see which way he'd fall and if he'd try to correct himself. The doctor gave us recommendations: we could work with him this way and that to see if we could make him burn the necessary neuropathways that would help him function somewhat normally.

How to describe my sister during all this? A mama bear. She worked his limbs, over and over. She was told he wouldn't understand music, but she played it for him constantly in the hopes that another part of his brain would learn to love it. She made him stand; she made him sit; she made him do things that other "normal" babies weren't doing at that developmental point. She was going to do every thing she could to make sure that her baby, no matter what his problems, would develop as close to normally as possible.

Now, I have other nieces and nephews. They all started walking at different times, but with Drew, they warned us that it might be a good long time before he started walking. However, about a month before his first birthday, my sister and I were playing with him, sitting a few feet apart from each other and helping him practice his balance. "Let go," she told me. "Watch." And then, he stood, all by himself. Mary smiled and said, "Come to Mama." And do you know that little boy walked? Eleven months old, missing a major part of his brain, and walking.

Since then, he's been something of a holy terror, running around the house like Godzilla. They weren't quite prepared for how quickly he was going to be moving, in fact.

Enter my brother-in-law. He's a good guy, and tries to do his part to share in the childcare. My sister went to volunteer in her daughter's classroom one day, and Tom was left alone with the baby. He put Drew in one of those walkers, and Drew was running happily all over the floor. That baby was fast. So fast, in fact, that when Tom ran downstairs to get something and didn't close the door all the way, Drew grabbed the handle, pulled it open and went tumbling down the stairs. (Men.)

Now, you'd think a spill down the stairs wouldn't be a happy ending to a story, but when they rushed him to the hospital, they decided to do another MRI to check for a concussion. They got the results back: no concussion, and no stitches needed. He was relatively unscathed, considering the tumble he'd taken. Oh. He sported a nice black eye for about a week.

But here's the kicker: Mary looked at the MRI results and saw a difference. Things that weren't there when he was born were there. They told her this was impossible, but she showed the films to me and I, too, saw the difference. Even to my untrained eye, it looked significant. They'd told us it was impossible, but it really looked different to us. I was almost afraid to hope.

She called the neurologist and made an appointment. When she told him what she thought, he looked at her with pity, because of course, he thought it was impossible that there would be a change. But there was. The vermis, which at first had seemed nonexistent and then underdeveloped were now normal size. And the cerebellum, which had been totally underdeveloped, had grown to almost normal size on one side. The other side is still underdeveloped, but the doctor said that likely his brain would figure out a way to compensate.

It seems his brain already has compensated, because when he's unhappy, the only thing that will make him happy is music, the very thing they said he wouldn't appreciate. He's got great taste, too. His favorite videos are the Muppets. For Christmas, I found a Kermit doll on ebay. Now that he's walking, he carries it around with him.

In short, our beautiful baby boy has a much brighter future than we'd originally thought. He might never play baseball, but hey. Maybe he might. Miracles do happen. He is, I think, proof of that.

1 comment:

Cassandra said...

Is there any possibility that your nephew has this Rhombencephalosynapsis"

Glad to here that things are better than the diagnosis given.