He's pretty spoiled, and has every right to be. I think that boy has been indulged in every way we could think of. He'd been to one Disney property or another eight times by the time he was twelve years old, for example.
Classic overcompensation.
His way into the world was not simple. At the first checkpoint in my pregnancy, Dr. Stalsbroten told me that there was an indicator in my blood that there could be a neural tube defect. At my advanced age of 36, he was concerned about Down's Syndrome or spina bifida. But it's borderline, he said. We could do amniocentesis and know for sure. But what would I do about it if I knew for certain? Nope, just leave it alone and let it happen.
Same Dr. Stalsbroten informed me of a mass in my abdomen during the first ultrasound. He sent me to Dr. Ely, an obstetrical surgeon, for a consult. The object was in between golf ball and tennis ball size and attached to an ovary by a stem. This is not good, said Ely, because even if it is something benign it could twist and necrotize. And if it is malignant it needs to get out of there quick so it doesn't kill you. Let's just open you up, take it, biopsy it, and deal with it while you are still under anesthetic. That's the efficient thing.
What about my baby? At twelve weeks' gestation isn't that a little tough on him? You would likely miscarry, said Ely. But if there's a malignancy, we'd have to clean everything out anyway.
This guy is steely, I thought to myself. Who else can we talk to? Stalsbroten sent me to Robert Pringle in Mount Vernon, who told me pretty much the same thing with one exception. He asked me: What do you want to do? I asked him: What are possible scenarios? How likely is it I'd survive cancer, anyway? What if I let the baby have his own life and worry about mine later?
Dr. Pringle the Human Being said let's wait a little while, then. If we get you to six months, the odds are good I can stop a miscarriage in surgery. I can wake you up in the middle of the process if I find malignancy, and you can tell me what you want me to do.
And that is what we did. He found something called a teratoma cyst, which is a very interesting growth. It's an egg that has not absorbed sperm, but is ripe at the time of conception. Pregnancy hormones stimulate it to grow, but without a blueprint, it's willy nilly. So you might see a tooth, or a strand of hair... even brain tissue. That's one theory. Another is that the cyst was my fraternal twin and it had been there as long as I've been, but three pregnancies had stimulated it to grow until it was noticed. It has no one's DNA but mine, so it's hard to prove where it came from.
What a relief to wake up in a recovery room intact! I had some early labor contractions, but the Good Dr. Pringle put a stop to them, and we ran for the finish line over the final weeks.
But there's more, said Billy Ray.
I went back to work at the Prosector's Office at the end of my leave (with a couple of interesting detours as a temp for Steve Skelton, Doug Owens, and the Public Defenders Office). I had a wonderful daycare that was run by the right kind of Mormon family. Say whatever you want, but these people can be some of the most ethical and kind folks you'll ever meet. Jim and Kathy Christianson are two of the finest people I know and I'll say it right here!
I digress.
After the five month checkpoint, Dr. Stalsbroten called me at work. He said that Ross' head growth was outside the chart, and he made an appointment for us at Children's Hospital the following Tuesday. What does that mean, I asked. Stalsbroten said he thought he should not speculate, but leave the entire process to Children's Hospital.
Bang. I'm taking my break, I announced, and walked outside. Two blocks away was a used book store, the closest I was going to get to a library in fifteen minutes. I found a 1962 family medical encyclopedia and within a few minutes I read something like this:
"Hydrocephalus is sometimes found in the womb or sometime during infancy... large head, downward cast of eyes... shiny scalp... fontanels that don't seem to be closing as normal...." Yep, that's Ross.
"Prognosis: as there is no surgical remedy, the patient gradually grows lethargic and sleepy and slips into a coma from which he does not awake. Death is inevitable."
Back to my office. I must speak with Stalsbroten. He's not too busy to take my call dammit.
You'd better explain this, I said. He asked where I got the medical information and I told him. He said well there are surgical remedies now, and yes he was very sure it's hydrocephalus and it was too early to start dreading. The child does not have a death sentence, there is excellent management in this modern age.
My boss sent me home. Thank you, Mavis, for having a heart.
Tuesday was in the middle of Thanksgiving week, and things at Children's were winding down for the four day weekend. We got right into radiology, though, and the tech scanned Ross' tiny head. We could see a big, fat ominous-looking X taking up most of the space in his skull. The radiologist said, "I can't interpret this image for you, but I can't pretend you don't see it, either. Walk directly to neurology, and I'll send the images over to them as quick as I can get it there."
Hydrocephalic/Normal
Hydrocephalic/NormalWe carried our son as directed and waited about half an hour. After a quick course on neurology, brain surgery, and shunt appliances, we were told that they could probably schedule the procedure for the following Tuesday, what with Thanksgiving and all.
We'd been talking to resident surrounded by medical students in short white coats. "See, this kid has all the classic signs." Four of them touched Ross' head and said, "Very large fontinal. Sunset eyes. Yes, the skin is tightened across the skull and has a shiny cast, just like in the books." They were delighted.
NO! I practically shouted. Look at how fast this came onto this baby! What can happen to his intellect between now and then? Can you answer that?
The resident and the white coats made a quick retreat. And then they came back.
Tomorrow morning at 9:00. We filled out the admittance papers and I extended my Skagit County employee's insurance card. Thanks again, Mavis, for having a seat for me when my leave was over.
Dandy-Walker Malformation is a neural tube defect. How about that?
There were many, many fears and obstacles ahead after the very successful surgery. Would the boy have deficits? He did. He had poor balance, low muscle tone, and some dyslexia. He repeated Kindergarten and still couldn't write the alphabet in the correct order until about the end of first grade. Letters were sometimes backward until third grade. He could not peddle a tricycle until he was four. He had headaches until he was about fourteen.
In his infancy, he could have stopped breathing, or his heart could have quit because of the odd formation of his cerebellum (the cyst on the fourth ventricle split the cerebellum down the middle, kinda) Nerve connections could have been incomplete. He had sinus infections. Those are oddly-shaped, too.
He decided he wanted to skate on a hockey team in Mount Vernon when he was nine, but first he had to learn to skate. It was painful to watch, but he went from parallel to upright in about three months of trying hard. He made the team and played two seasons before he went on to the next interest.
Skateboarding. Dangerous stuff. I seldom watch because it gives me the shudders, but he's quite good at it.
Of course, we never told him he had deficits, and the school system is too self-absorbed to test him and tell him.
You're a miracle. Three times over a miracle, I told him when I caught him with marijuana. Don't you dare screw your brain up with chemicals. I'll kick your ass.
I look at him at seventeen and I think... it's time now I can stop worrying about his development. You cannot tell him apart from the other guys. You really can't unless you x-ray him.
Ordinary is about the best a kid can be.
