October 19, 2022
This subject, I can sink my teeth into. Thankfully for you, I have a word limit that keeps this to a 2-minute read. Maybe I’ve got a book in me some day.
October is Down Syndrome Awareness Month. For a couple from a small town in Kansas I met this month, and for my wife, Barbara, and me, every day is about Down syndrome awareness.
I’ll write about our fifth child, Caroline, another time. To sum it up, she’s the rock star of our house, and we’re blessed beyond measure and feel worn out at times.
We immediately notice other vehicles that have bumper stickers that read “I Love Someone with Down Syndrome.”
When people with Down syndrome turn 21, all those pediatric care providers are not supposed to take care of them anymore and they have to come over to the adult world, and that’s very traumatic." - Moya Peterson, PhD, APRN, FNP-BCNurse Practitioner and Adults with Down Syndrome Specialty Clinic Director
What is Down syndrome?
First, in case you’re a grammar stickler, the “Down” is capitalized because it comes from British physician John Langdon Down, who discovered the disorder more than 150 years ago. The “syndrome” part is often not capitalized unless in titles. Maybe to cheekily put it in its place, like the lowercase “c” some organizations use to stick it to cancer. Or there’s Royals broadcaster Rex Hudler and his wife, Jennifer, who call it “Up syndrome.” Their oldest, Cade, has the blessed extra chromosome.
Our own DNA is made of up 23 pairs of chromosomes from the mother and 23 from the father, a total of 46. Sometimes, an extra chromosome (the 47th) is created in the 21st pair. That condition is called trisomy 21. There’s no known cause for Down syndrome, and you know the signs: flattened face, almond-shaped eyes (I’m a sucker for ‘em), short stature, low muscle-tone and killer smiles.
Their intellectual and development problems can be mild, moderate or severe. Most stand a pretty good chance of lighting up a room.
But taking care of people with Down syndrome ain’t easy.
Taking care of adults with Down syndrome
The Kansas couple I met had driven 2 hours to visit the adult Down syndrome clinic in the Medical Pavilion on the health system’s Main Campus in Kansas City. More than 200,000 people in the U.S. have Down syndrome, and their story is better known that it used to be. Nurse practitioner Moya Peterson knew of only a few clinics for adults when she opened hers in 2009. In one of only a dozen of its kind in the nation still, she sees patients 2 days a week.
“When they turn 21, all those pediatric care providers are not supposed to take care of them anymore and they have to come over to the adult world, and that’s very traumatic,” Peterson told me as 2 families let me sit in on their well checks with her.
As a parent of a special needs child, I can “get away” with saying that often children with Down syndrome are labeled as “loving, sweet, so happy.” All of that is true. But it’s easy to forget that (a) they can be like any other kiddo and (b) their medical issues can be serious. Many children, like our Caroline, undergo open heart surgery as babies because of heart defects. Gastrointestinal and immune disorders, sleep apnea, obesity and even the increased chances of leukemia and early dementia are on the risk list.
“I get it,” Peterson said. “If somebody operated on my kid’s heart, I would not want to give them up. I would want them to be there because they know my kid. And to say, "I can’t see you anymore." It’s a crisis in their family’s life. Somebody has to step in and find who’s willing to work with special needs and who can do it.”
Where you get your care matters
The 2 rock stars I met during my visit were 25-year-old Johnny and 46-year-old Dustin.
Johnny just moved in with his adult sister, her husband and 2 children because caring for him was simply too much for his aging mom and dad to handle. Now, big sister has to learn everything she can about caring for an adult with Down syndrome. Sure, she grew up with him. But providing care for someone is a different ball game. That’s what makes Peterson’s clinic so valuable. In their short session, she was able to advise them to drop a medication that wasn’t helping enough to outweigh a side effect.
Dustin’s story is completely different. People with Down syndrome often wouldn’t live past childhood. Now life expectancy is beyond 60. Martin Ambrozi is a nurse who oversees adults with disabilities at the Platte County Board of Services and brings Dustin for care under entirely different circumstances.
“Moya gives us a great insight on Down syndrome, dementia and Alzheimer’s and helps us understand where they’re going to be 6 months from now, a year from now, 2 years from now,” he said, “so we can plan for those things and start working toward those now instead of waiting for something to come up, so we can be like, ‘Oh, let’s deal with this now.’”
Please take time to read more about the clinic here and think about Peterson and those adults with an extra chromosome who are, despite all this, living their best lives.
“I would do anything for him,” Johnny’s sister said.
She already has.