Life Wrapped in Plaster, Parenting My Son With Progressive Infantile Scoliosis
I grew up outside — exiting the back door early in the morning and not returning home until dinner — having spent the day playing in sprinklers, climbing trees, and wandering the creek’s ravine behind our home for miles. Being outside was fun and an inexpensive way for my single mom to keep me entertained. I fell out of trees, climbed from creeks with leeches on me, and took naps in the leaves. I didn’t realize it at the time, but nature was weaving itself into the very fabric of my being.
Fast forward 25 years or so.
I graduated with a wildlife biology degree and master’s degree and had a fulfilling career as a Supervisory Park Ranger in the National Wildlife Refuge System. I was in my game. We had a young son, whose goal in life seemed to be waking up at 5 am and asking to go outside. We lived in Florida, and took full advantage of the outdoor spaces, the beach, the woods, parks, playgrounds and hiking trails.
Enter our second son in late 2013. It had been a difficult pregnancy. The little booger put me on bed rest at 30 weeks and I struggled with being left on the couch for 10 weeks while my husband and son went fishing, walked on the neighborhood trail, or headed to the beach with our best friends across the street. “This kid can’t get here soon enough,” I kept thinking, while at the same time willing him to stay put until he was full term.
Our little guy entered the world fairly easily, but two times in the hospital he stopped breathing and was whisked away from me. We were discharged one day late with a full bill of health for us both (although let me tell you, recovering from a c-section isn’t exactly a full bill of health). However, his breathing issues continued. Every hour he stopped breathing. Sometimes it was just for a second, other times we would lay him down to start CPR, only to have him gasp as we bent over him. Those first six months were a maze of doctor visits, hospital scares, taking turns staying awake and cocktails of medications. With no known cause.
Finally, when he was 6 months old, things seemed to calm down. We relaxed. We both started sleeping more than one hour at a time. We spent three months in blissful family happiness. Back to us. Our outdoor selves.
When Jack was 9 months old, my mom came to visit. After a couple of days, she told us his back seemed a little off. Almost like one half of his back wasn’t working right. He leaned to the side when he sat, and his head tilted, too. My husband, Jay, commented he had also noticed it a few nights before in the bath. I stared. They were right. Something was off. And it hadn’t been there before. We whisked him off to his pediatrician, and then to a pediatric orthopedic specialist. Then, our world crashed.
At 10 months of age, Jack was diagnosed with a rare and life threatening spinal disorder called Progressive Infantile Scoliosis (PIS). Imagine you grabbed his spine, then twisted it like a bottle cap. The whole ribcage moves as you twist. His ribs dig into the heart and lungs, and a hump appears on that side of his back, while the other side of his torso and back are sunk in. It creates a scoliosis curve. In Jack’s case, already at 40 degrees as a baby. I heard the words the specialists said that day, but didn’t digest them. I just stared at the twisted skeleton in my baby’s x-ray. I felt like water whooshed in my ears.
Four months later, we were sitting at the Shriners Hospital for Children in Greenville, South Carolina. We were here because through tons of research and phone calls, this was the place to be. Dr. Pete, as we call him, is a renowned specialist in PIS, one of the few in the world. Another x-ray; 79 degrees; debilitating. Jack was scheduled that afternoon for surgery to get a Mehta cast.
A Mehta cast is a permanent plaster cast that is wrapped around Jack’s body. He goes under full anesthesia, is intubated, and has IVs. He is put on a specially designed table and raised up. The surgeon gently untwists his little body and stretches it as much as he can, then wraps him in plaster. He cuts a hole in the plaster for the belly, and a small D-shaped hole in the back that allows for de-rotation of the spine. Jack comes out of anesthesia, and moleskin and Coban tape are applied to the cast. We do this every eight weeks as Jack grows. Like staking a tree. It’s been two years and 14 casts, and his rotation and curve have been cut in half. We have hope that we can correct him enough to avoid invasive spine surgeries later, though that remains a possibility.
As I sat staring blankly at Dr. Pete that first visit, one word cut through me: plaster. Plaster means no water. He can’t get wet. No baths. No showers. No swimming. No beach. It also means he can’t get dirty — dirt or sand down the inside of a cast can cause major skin irritations, sores and infections. No sand boxes or playing in the dirt. Plaster also gets hot. He is subject to heat exhaustion and heat stroke easily. We lived in Florida at the time (and now Oklahoma), where it’s above 80 degrees most of the year. In addition, the cast weighs three to four pounds. That much weight on a baby throws off his balance. He had to re-learn to walk, crawl, run, bend over, sleep and play.
Here I am — an outdoor lover at heart — with a baby who can’t get wet, dirty or hot. What do we do?
For the first six months, we mainly lived indoors and we rarely went anywhere. We created nature games we could play inside. We gave Jack sponge baths with his feet in the sink. We built sheet forts over the kitchen table. Our older son had to take showers or baths only once Jack was asleep, as the sound of the water sent him in a frenzy, wanting to join in. Those first six months of cast life all we concentrated on was adjusting. We were turning the ship to a life wrapped in plaster.
Eventually, though, as we integrated the Mehta cast into our daily lives, we began to yearn for our time outdoors. Our older son, who had never had these kinds of limitations, was begging to play in the heat, splash in puddles and roll in the dirt. He was only 5 years old. We came to realize that we didn’t want any of us to miss out on things if they were safe for Jack’s cast. So we began to experiment with ways to get Jack outside. We bought two “ice vests,” which have ice packs on the front and back. The vest keeps Jack cool for up to an hour. We also bought several cool neck wraps — like the ones construction workers use. We always have cold water with us. And we bought two Tuffo Muddy Buddy rain jackets — the kind that cover him from head to foot. Combined with rain boots, the rain jacket allows Jack to jump in puddles or participate in water play. Feeling his cast was safe, we began to explore.
Sure, we couldn’t stay outdoors all day at the beach. The beach and swimming pools are out. But trails, woods, playgrounds, parks and even sprinklers are back in. It took Jack about a year of cast life to adjust to its weight. If he lost his balance, even just a little, the weight of the cast sent him over. Hard. There were a lot of scrapes, scratches and bruises. But he’s a resilient kid who just gets up, asks for a band-aid and keeps truckin’. Maybe we’re a little more “helicopter” than we’d otherwise be, but we don’t mind. It’s that or not going out at all. As Jack has gotten older (he’s 3 now), his balance is no longer much of an issue. Our reins are loosening and Jack can explore safely.
We don’t let plaster define us as a family, and we don’t want it to define Jack any more than it has to. We believe this so much, in fact, that he now goes to a nature preschool, Scissortail Children’s School. That’s right — he spends all day in nature now. They dutifully put on his ice vest when it’s above 80 degrees, make sure he doesn’t get sand down his cast when he’s playing, and put his Tuffo jacket on whenever it’s raining or they want to play in water. With just a few adjustments, Jack doesn’t know he’s missing out. And our family is getting back to nature.
Follow this journey at Nature Girl in a Technical World.
We want to hear your story. Become a Mighty contributor here.