Miller is pretty much your typical 4-year-old. He loves running around outside with his big sister, Marlowe, and his dog, Pretzel. He likes everything about the Teenage Mutant Ninja Turtles, and he’s looking forward to playing T-ball this fall.
“In the beginning, we didn’t know how long we’d have with him,” Miller’s parents, Kelly and Jake, explain of their only son. “Now, Miller is full of life and full of energy. He’s our tough little guy.”
Diagnosed in Utero
Before he was even born, Miller was diagnosed with hypoplastic left heart syndrome (HLHS). A rare congenital heart defect in which the left side of the heart is extremely underdeveloped, HLHS prevents normal blood flow through the heart.
“We initially thought we’d have to go out of state to receive the best care for Miller,” Kelly explains. “We were so relieved when we discovered that the Heart Institute at UPMC Children’s is one of the best pediatric heart programs in the country.”
Miller was born on June 30, 2020. After only a few moments in his mother’s arms, he was whisked off to UPMC Children’s for treatment.
A Precarious Time
For the next five months, Miller fought for his life.
When he was 2 days old, Miller experienced an arrhythmia and needed to be shocked back to life. Thankfully, he recovered, and his health stabilized for a period.
Then at 10 days old, Miller had his first heart procedure. The procedure was a success, but Miller faced additional health issues thereafter, including gastrointestinal problems, as well as a stroke.
For their part, Kelly and Jake did their best to juggle life in the hospital with Miller, while balancing life back home in Beaver Falls with daughter, Marlowe.
“This was the height of the pandemic,” Kelly explains, “so Marlowe and Miller couldn’t even see each other in person. Jake and I would take turns staying at the hospital, and Social Work would give us gas cards to help us pay for all our trips back and forth to our home.”
At the end of October 2020, UPMC Children’s Heart Institute surgeons performed a second surgery on Miller called the Glenn procedure to improve his heart circulation.
Once again, the procedure was a success. Over the next few days, Miller grew stronger.
Meeting Marlowe
Despite several unexpected setbacks throughout his hospitalization, Miller proved to be a resilient baby. After many weeks in the hospital, following two heart surgeries, a multitude of tests and procedures, and countless sleepless nights for Kelly and Jake, Miller was discharged home.
At 5 months old, Miller was finally able to meet his big sister, Marlowe, for the very first time. From the moment they met, the brother and sister were inseparable.
The Importance of Play
Miller has made many visits to UPMC Children’s in the nearly four years since his discharge from the hospital in the fall of 2020, but his family takes them all in stride. “Children’s is our home away from home!” Kelly says. “Everyone at the hospital treats each child as their own.”
As for Miller, he still gets a little nervous when he has appointments at the hospital, despite being a patient of many different divisions, including cardiology, neurology, endocrinology, and gastroenterology.
Kelly says that donor-funded resources like Child Life, the Moulis Library, and the medical-free playrooms help to make visits to the hospital a little easier.
Miller’s most recent hospitalization was just this past spring. He was admitted to the Heart Institute for a Fontan procedure, an open-heart surgery that improves blood flow from the lower body to the lungs. Miller was inpatient for nearly a month.
“Miller understands things now and Child Life helps to explain what’s going on medically. They also get Miller up and out of the room to play,” Kelly says. “Child Life was essential during this past hospital stay.”
The Best Thing for Him
It’s only been a few weeks since Miller’s most recent Fontan procedure, and already he seems healthier than ever. His parents explain that Miller’s limbs look pinker and less gray. They also note that the already active preschooler is demonstrating more endurance than he did before the surgery. They credit Miller’s improving health and remarkable potential to the exceptional care he receives at UPMC Children’s.
“The Heart Institute physicians and all the doctors at UPMC Children’s have treated Miller as a unique individual,” they explain. “He’s not a statistic, not a number, he’s Miller.”
“I know that when I bring my child to UPMC Children’s, I am doing the best thing for him,” Kelly continues. “He’s receiving the most advanced care available. At UPMC Children’s, each child is special. Each child can exceed expectations and truly thrive.”
Miller’s story is featured as part of the KDKA Free Care Fund Telethon. The Free Care Fund allows UPMC Children’s to provide the care and treatment a child needs, regardless of their family’s ability to pay. Put a child’s future first and support Free Care today.