As a mother whose child, 13-year-old Jack, does not communicate verbally, Ann Schrooten is quick to point out that there is much more to Jack than the wheelchair, trach and medical equipment that accompany him.
“It’s hard to know what he would say if he could talk,” says Ann, but it would probably be “Hey, I’m in here. I hear you, and I know what’s going on.”
“If you take the time to look into Jack’s eyes,” says Ann, “they will speak to you”.
Looking beyond the silence and all the medical equipment goes a long way - 1500 miles in the Schrootens‘ case. Jack was born in St. Louis, but his family moved to Phoenix nine years ago. Despite the distance, the family travels to St. Louis from their home in Phoenix every one to two years so that Jack can receive ongoing care for a rare form of muscular dystrophy.
“These people (at St. Louis Children’s) have known Jack since he was 2 months old,” says Ann. “They’re connected to him. Oftentimes when we meet new doctors, they can’t see beyond all the medical equipment and a child who doesn’t talk. But at Children’s, they know Jack, they acknowledge him and they treat him with kindness and compassion.”
Jack was born at Missouri Baptist Medical Center and spent the better part of his first 6 months of life in the Intensive Care Unit at St. Louis Children’s Hospital. Unlike some forms of muscular dystrophy that progress over time, Jack’s particular form caused muscle weakness from the beginning. He has been ventilator dependent since he was four months old and has always needed a wheelchair to get around.
Over the years, Jack has made lifetime friends throughout the hospital - from the intensive care unit to same day surgery, as well as the cardiology, ophthalmology, orthopedic, neurology and ENT departments.
Caring for Jack has been a learning experience for Ann and she is using her experience to help physicians and staff better communicate with parents who play similar roles in their children’s lives.
“I was sent home with a medically fragile child and I had no choice but to learn how to care for him. If Jack requires a hospital stay, it’s important to recognize that I am part of the team,” says Ann.
Inviting parents to join caregivers as part of their child’s medical team is common practice at St. Louis Children’s, a concept known and embraced as Family Centered Care. The hospital’s overall approach to medical team dynamics is what draws the Schrootens back to St. Louis for care, rather than finding new specialists in Phoenix.
“St. Louis Children’s Hospital is among the top ten Childrens’ hospitals in the country - it’s one of the best. Plus, you can’t get much better than Washington University’s Neuromuscular center. But, by far, the most important thing that I find here that I can’t find in Phoenix is the exceptional coordination of care for a medically complex child like Jack,” says Ann.
One aspect of that coordination of care is the willingness of Jack’s physicians to collaborate with one another to schedule surgical procedures at the same time so Jack only has to go under anesthesia once.
The long-term prognosis for a child with Jack’s form of muscular dystrophy is not well known. The Schrootens have learned to appreciate the things that matter now - like Jack’s smile.
“Jack has a great quality of life and St. Louis Children’s Hospital plays a large part in helping him achieve and maintain this quality of life – for however long his life will be.”
