Amy and Matt Sargent of Muncie, Indiana, wake up every morning to giggles over the baby monitor from their 20-month-old son Zachary. After a sound night’s sleep, he and his stuffed elephant bedmate kick off the day with a few minutes of playtime, sharing whatever the jokes are these days that tickle a toddler’s funny bone.
You wouldn’t think this little man would start his day on the sunny side of the street given what else he goes to bed with—oxygen, a sleep monitor and braces on his feet. They’ve all been vital to his health due to just a partial list of the conditions—six in total—he’s been diagnosed with since he was born in 2013. Since then he’s undergone four surgeries, countless doctor’s appointments, tests and procedures, without going more than 17 days between a visit or stay at Riley at IU Health.
None of it’s dampened his spirit though; according to Amy, those early-morning smiles last all day long.
“He approaches everything with joy. He never has a bad day.”
Based on an ultrasound and feeling great during pregnancy, Amy said they had every reason to believe she would deliver a healthy baby boy. Even when her blood pressure took a dangerous jump at 36 weeks and she was admitted to Indiana University Ball Memorial Hospital the day after Thanksgiving, she and Matt still believed that they “were going to have a healthy baby and he’s going to be fine.”
But when Zachary was born the next day, the story changed. He wasn’t breathing and was blue. His medical team quickly got him breathing and within an hour he was breathing on his own. Zachary had other non-life-threatening issues as well: clubfoot, which caused the top of his foot to twist downward and inward, and an undescended testicle.
The doctor and nurses also saw other red flags—two webbed fingers and two webbed toes—indicators that Zachary might have health issues they couldn’t see. Within hours he was transferred to the neonatal intensive care unit (NICU) at Riley at IU Health for further testing.
“It was scary,” says Amy. “I had lots of questions and didn’t know how to ask them. There’s a point though when you don’t want to ask because you’re not sure you want the answers.”
Before Zachary left the hospital, Amy and Matt had answers—ones they never expected. Neonatal genetic testing revealed that Zachary had Down syndrome, a diagnosis that took them, and Zachary’s NICU doctor, by surprise.
“The genetic testing indicated that Zachary had Down syndrome, but he didn’t have any of the condition’s physical indicators,” says Amy.
Physical features children with Down syndrome may have include an extra skin fold on the back of the neck, extra space between the big toe and second toe, a single line across the palm of the hand rather than two and smaller, abnormally shaped ears.
“We learned you either have Down syndrome or you don’t,” says Amy. “The physical features can be more or less prominent.”
Before Zachary left the hospital, they learned he also had laryngomalacia, a birth defect caused by floppy tissue above the vocal cords that falls into the airway. It can result in noisy breathing and as in Zachary’s case, sleep apnea, which causes pauses in breathing while sleeping.
Three months later, they added pulmonary hypertension—high blood pressure that affects the arteries in the lungs and the right side of the heart—to the list.
“We haven’t had a typical, new-baby experience,” admits Amy. “The second Zachary was born we hit the ground running and we haven’t stopped.”
A team of specialists guides Zachary’s care
Their new baby experience includes a long list of specialists, along with treatments that Zachary’s undergone for his conditions: casts and braces to keep his feet turned out to correct his clubfoot; oxygen and a sleep monitor at night to treat sleep apnea; four surgeries—two to remove the extra tissue flopping over his airway, one to separate his webbed fingers and one to remove the undescended testicle; a heart catheterization and physical, occupational and speech therapies.
Amy says it’s Zachary’s spirit that’s helped them stay positive through it all.
“He’s a happy little boy who wants to learn, play and engage,” she explains. “Day-to-day we forget that he has medical issues or has diagnoses that aren’t ever going away.”
Zachary’s doing all he can to make his extensive team of Riley at IU Health specialists also forget that he has medical issues.
“He blows them all away,” says Amy. “Tell us he’s not going to do something then he’ll show you he will. Everything on paper says he’s a little boy who’s not hitting milestones. But he is. He rolled over at six weeks, sat up on his own at 11 months, he can walk holding my hand. His doctor also thinks as he continues to grow and gain weight, the hypertension will improve.”
She says he’s also curious and learning, stacking blocks, putting coins in a bank and learning sign language to offset a slight speech delay.
And soon, it will be just him and his elephant going off to bed. After almost two years, his doctors say his conditions have improved enough that his nights of sleeping with braces, oxygen and a sleep monitor are over. That means their near biweekly visits to Riley at IU Health are, too.
“Matt says Riley is our favorite least favorite place,” jokes Amy. She quickly adds, “No one looks forward to going to the hospital. But we don’t dread it. All of Zachary’s specialists are on our team; we’re all a team. We don’t know for sure what his life will look like, but we’re going to do everything we can to make sure his life is what he wants it to be.”