4 minute read
Proud of Every Scar
OF EVERY by Diane Ciarloni | photos courtesy of Kimberly Gastineau Scar Proud
Try writing a children’s book titled My Gastrostomy Tube. But don’t try to say it or write about it until you’ve experienced the painful reality of your child being diagnosed with it.
Advertisement
Kimberly and Tyler Gastineau, Argyle residents, enjoyed a normal, relatively uneventful pregnancy with daughter Carli. The only missing piece being Tyler was deployed in Afghanistan when the actual birth took place.
When Carli was two, the family awaited identical twins Tommy and Jack to join them. Unfortunately, that wait was significantly shorter than it should have been. Doctors discovered the boys suffered from twin-to-twin transmission syndrome, in which they shared a major blood vessel. On a simpler level, Tommy was starving while Jack benefitted from the majority of the nutrients.
The twins were “taken” at 25 weeks. Jack weighed twice as much as Tommy at birth. That, however, isn’t saying much since Tommy only weighed one pound!
“The doctors told me there was only a 25-percent chance they would survive the emergency C-section,” Kim said. “During the surgery, a gastrostomy tube was sutured to Tommy’s stomach wall. That’s how he would ‘eat.’ They also performed heart surgery at the same time. Tommy’s vocal cord was paralyzed during the procedure so, even today, he has a very quiet way of speaking.”
Tyler was once again on military duty when all this was happening.
Other than being the size of a tiny puppy, Jack had no major problems. He did spend some time on a ventilator and remained in the hospital for four months. “We were told Tommy would always be a special needs child,” Kim explained. “He stayed in the hospital the first six months of his life, and I was there with him every day.
“Carli was only two, so I missed a lot of her learning and her ‘first’ this or that. I missed cuddles with her and a lot of the same things with Tommy and Jack. But all three adapted and all three were fighters. Jack was able to stop using his gastrostomy tube two years ago. That doesn’t mean the need may not return but, for now, he’s good.”
While Jack didn’t suffer all the ill effects of Tommy, he was still pushed into a game of “catch-up” when it came to things such as
gaining weight and walking. “They finally started gaining weight and Jack was doing what I called little toddles. They were both 1 ½-years-old before they began walking. They were catching up with other kids by the time they were three.
“There were so many waiting rooms in hospitals and doctors’ offices,” Kim said with a half-chuckle. “Carli remembers many of them and, today, she’s like a little second mom to the boys. They’re all three very affectionate with one another, holding hands and hugging.”
Kim works hard to make sure Tommy doesn’t see himself as different. “I want him to be proud of every scar,” she said. “I never want him to think, ‘Why did this happen to me but not to Jack?’
“Tommy’s body doesn’t produce certain immune hormones. For him, breaking a bone can be extremely serious because of the possibility of shock. I felt it was so important for him, as well as for Jack and Carli, to understand all the parts of this journey. I searched the Internet for short, five-minute reads about his condition. I felt it was so important for them to understand and not live in fear.
“But there was nothing! I finally wrote My Gastrostomy Tube as a form of a bedtime story. I found out about a publisher in England interested in special needs children and they accepted it. It’s due to hit the end of January 2022, and it’s on Cook’s Children’s Christmas wish list.
“The book explains therapies and how the tube is a way to deliver nutrients to the body. There will always be uncertainties. For example, there may come a time when Tommy faces some form of deafness. For someone such as us – and for Jack, as he becomes an adult – having good, solid insurance is not negotiable.
“But, whatever happens, we want him to be proud of himself.”
