Beyond the Fog of Fear

Aidan Gorman suddenly stopped eating and started crying. Treatment at Children's Hospital helped him recover from hydrocephaly and reflux.
Aidan Gorman suddenly stopped eating and started crying. Treatment at Children's Hospital helped him recover from hydrocephaly and reflux. (By Jahi Chikwendiu -- The Washington Post)
By Donna Scaramastra Gorman
Special to The Washington Post
Tuesday, August 7, 2007

If you're lucky, you'll spend a lifetime in the D.C. area without ever going to Children's Hospital. It's only a few miles from the Washington Monument, but the tourists strolling the Mall seemed continents away on that spring day when my baby boy was admitted. Three years on, I've come to recognize how Children's is at this city's heart.

Aidan had always been a skinny little guy, and he was late to sit up, but he was such a happy, mellow baby that we'd never really worried. Everything had been fine at his four-month appointment. Then, 10 weeks later, when we were on vacation, Aidan stopped eating and started crying, so we took him to the local doctor.

She weighed him, measured him, poked and prodded, and said, "There's something wrong with his head -- it's way too big. And his weight is so low, he's barely even on the charts anymore. You need to get him to a neurologist."

Thus we found ourselves back in Washington at Children's, where Aidan was admitted so various specialists could throw themselves into the task of finding the problem and fixing our baby. That week in the hospital passed in a blur of fears and tears.

Geneticists quizzed us about our family histories. Gastroenterologists asked about his digestion.

Neurosurgeons and neurologists measured his head, over and over again. Twice, they put him under general anesthesia; and twice I wandered the corridors, shaking with grief.

The nutritionists told me to measure everything that went into his stomach: No more breast-feeding. I held him as he gulped formula, silently swallowing my own fear that my milk hadn't sustained him.

We stayed in the hospital for a week. By the time we left, Aidan had had an endoscopy and an MRI. His chromosomes had been analyzed. His sweat had been studied. His blood had been drawn countless times. At night, he'd slept fitfully while I lay awake, listening to the cries of nearby children and wondering what was wrong with them -- better than wondering what was wrong with my baby. I'd moved from a life of play dates and burp cloths to this surreal world where the parents I met used such phrases as "permanent brain damage" and "end-stage renal failure."

I desperately wanted my old life back. I made deals with God there in the darkness of hospital nights, while children wailed and nurses moved softly through half-lit hallways, shushing the patients and soothing their parents.

A diagnosis was made: hydrocephaly, reflux and "failure to thrive." That word "failure" hit me hard, indicating as it did that I had failed my baby.

On an intellectual level, I knew it wasn't my fault. Aidan's hydrocephaly had caused his skull to expand as water pooled inside. His reflux meant that his tiny body couldn't take in enough nutrients to grow. The combination left him with a too-large head and a too-small body, which meant he couldn't roll over or sit up like a normal baby. His MRI also revealed what's called a Chiari malformation -- a tiny bit of his brain was in the wrong place, which might cause more problems for him in the future.

None of this was caused by my failure to nourish him. Still, I spent that week in the hospital consumed by fear for my child and shame that I hadn't somehow caught the problem myself.

That week saved Aidan's life. He began taking medicine to control his reflux, and the hospital's nutritionists helped me to determine how to feed him so he would begin to gain weight. He was assigned a physical therapist, who spent hours working with him. The neurologist and the neurosurgeon together determined that he would not need shunts to control the hydrocephaly -- a bit of good news, at last -- and they taught me about possible symptoms the Chiari malformation might cause so I'd be prepared if a new problem arose.

After Aidan's discharge, we returned to the hospital several times a week for checkups and physical therapy, but I never got used to the routine: Hours each day in waiting rooms, always surrounded by sad-eyed parents.

I didn't want to spend time in that hospital, didn't want to belong to that select group of parents whose kids were sick enough to warrant attention from all of those doctors. I wanted nothing more than a normal baby, with a boring routine that didn't include hospital visits.

After a few months, Aidan slowly improved and his appointments became more infrequent. He sat, then stood, then started creeping, all a bit later than expected. When he took his first teetering steps, the physical therapist pronounced him "all caught up" and canceled his therapy. He was beginning to thrive.

Aidan is now 3, and he still has follow-up appointments with the neurologist to make sure his condition stays stable and benign. We worry when our top-heavy little guy topples over and slams his head. When he's late on a milestone, we panic, wondering if he'll start to spiral down again.

At our most recent appointment, the neurologist answered all of my questions carefully, never giving an indication that there were 15 patients stacked up behind us in her waiting room.

Then she left, but as I was getting Aidan dressed, she poked her head back in. "Mrs. Gorman?" she said. "You have a healthy little boy now. Remember to relax and enjoy that for a while."

She's right. Nearly losing Aidan reminded us of what a gift he is to us, every day. Now I watch my boys playing together on the kitchen floor, and it takes my breath away: Two healthy, happy little boys.

What mother could ask for more than that?

Every time I go back to Children's, I watch the other mothers, wondering how they cope with their own private tragedies. Some walk the halls in a fog of fear, just as I once did. Others seem resigned to their fate, looking at home there in the waiting rooms and the corridors.

One particular scene haunts me. We were waiting for yet another blood test. As I bounced Aidan impatiently in my lap, I watched the woman across from me. She wasn't old, but her face was lined and her hair graying. A boy -- I guess he was 10 or so -- slumped in her lap, trying to sleep. His whole weight leaned on her. But she didn't even shift positions. She just held him and kissed his head, stroking his hair as she sang him a lullaby.

I could understand something of what she was suffering, but she bore it with grace, dignity and love. While I was fretting about time wasted in the waiting room, she held her child -- really held him -- and focused on being his mother.

I pray for that mother, still see her in my mind's eye -- alone with her child in a crowded waiting room, singing him lullabies that he doesn't seem to hear, rocking him slowly to sleep as she supports all of his weight on her own narrow shoulders. And I hope that one day when I'm out with my children, I may recognize her strolling with her son among the tourists on the Mall. ยท

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