world down syndrome day 2026: navigating the unique biology of down syndrome
4 minute read
colt celebrated his 3rd birthday at a playhouse. yes, he spent two hours in the ball pit.
supplied
stay up to date on this topic
it’s world down syndrome day 2026! every year, i like to take a second to reflect on my personal experience with my son, colt. he’s three years old now, he has trisomy 21 and the things we face are unique to his life. this year, i want to talk about the stuff i knew nothing about before: the actual biology of down syndrome and how it changes his development.
delayed walking and the “average” milestone
we read that kids with down syndrome might not walk until they’re four—the window is usually between two and four years old. colt isn’t walking on his own yet, but he’s mastered the “scoot.” he can fly around the house on his butt, one leg sticking out to the side, pumping through the halls with his arms. he pulls himself up, climbs the couch and lately he’s taken to climbing onto a chair at the dinner table. he isn’t there for a meal, he just wants to sit at the table like a big boy.
he can take a few steps with a support. he holds our hands and takes a few steps before returning to his padded posterior. we also have a children’s shopping cart filled with weights that he can push along (the weights stop it from tipping over). he loves to practice his balance and then fall into my arms laughing. colt is going to get there, but he’s on his own schedule. who cares about averages, right?
managing low muscle tone and chronic constipation
one thing people don’t always talk about is the internal stuff, like digestion and pooping. because of lower muscle tone, colt has dealt with some pretty serious constipation. we’ve had some scary situations where he was in a lot of pain and we could actually feel a physical bulge in his tummy.
we’ve had hospital visits and worked with complex care specialists to get his diet right, but that was only part of the solution. the real culprit was his muscle tone, and the inability to work bowel movements through his system regularly. we’ve got colt on stool softeners now, and it’s working. the stool softener is another aid on the list of things he may have to take for the rest of his life. it becomes part of the routine and the positive outcome is all that matters.
advertisement
he’s in a lot less discomfort and pooping much more regularly. now we just make a joke of it when we catch an odour from the other room (again!?).
the challenges of pureed foods and chewing mechanics
colt is still on pureed food—ground beef, veggies, fruits and grains all blended up. he has an appetite like a horse and never stops eating, but the mechanics are tricky. he doesn’t naturally move food from the middle of his mouth to the sides to chew. instead, he pushes the food straight back and swallows.
we work with feed specialists using silicone tools and dissolvable crackers to introduce new textures and teach those jaw muscles what to do. we actually had to teach colt how to properly swallow and clear his throat because a study showed he was potentially aspirating—meaning food was sitting in his throat and dropping into his lungs. we’ve had a handful of hospital stays for bacterial infections because of that, so teaching him to chew is a major milestone we’re working toward.
heart health: pfo and the upcoming procedure
lastly, there is his heart. colt was born with a small hole known as a patent foramen ovale (pfo)—a hole between the upper chambers of the heart that is supposed to close shortly after birth. the pfo is still slightly open and because of how the blood hits the arterial wall, he has a heart murmur.
it tends to be harmless, and our multiple cardiologists have told us it is a low-risk occurence, but we still want to take every precaution available to us. with the presence of the heart murmur, colt qualifies for a procedure to plug the pfo.
the procedure is quit simple—10 minutes from start to finish, one cardiologist told us. they go up through the femoral artery in the leg and put in a tiny plug. it’s a low-risk surgery, and we want to do it now while colt is young. we want to get these interventions done before he’s old enough to find hospital stays traumatic.
advertisement
looking forward
colt is growing on the curve of a child with down syndrome. he’s got a good heart, he’s excited to move, and he loves his food. there are a lot of unknowns in this journey, but colt is healthy as far as we can see, and we’re very blessed to be able to say that.
share story
