A limousine will pick up three-year-old Ayden Smith on Saturday and send him off to the happiest place on Earth.
He was gifted a trip to Disney World by A Special Wish Foundation, a social services organization in Lorain, that grants wishes to children diagnosed with a life-threatening illness.
His mother, Brianna Smith, a lifelong Oberlin native and Prospect Elementary School librarian, called him a “heart warrior.” To date, he has had two open-heart surgeries and is due to have one more in the next year.
Ayden was born with Ebstein’s anomaly, a rare, congenital heart defect. It affects the tricuspid valve — the valve between the two right heart chambers — and causes a backward leakage of blood.
He also was diagnosed with pulmonary atresia, a second congenital heart defect in which the valve that sends blood out of the heart and to the lungs doesn’t form correctly, preventing normal oxygenation.
A third diagnosis — G6PD deficiency — is a chronic and genetic condition that causes his red blood cells to break apart.
Symptoms include cyanosis, heart murmurs, feeding problems, pale and clammy skin, dizziness, shortness of breath, and fatigue. Congestive heart failure can result from the extra volume of blood.
Smith’s doctor told her that Ayden’s case is the most severe he’s seen in a long time. At two weeks prior to birth, he had less than a 30 percent chance of survival.
“It was the hardest day of my life,” Smith told us, choking back tears. “I remember as soon as I left, I called my mom and said, ‘What if he doesn’t make it?’”
On May 15, 2015, Ayden was born at Rainbow Babies and Children’s Hospital in Cleveland. His first open-heart surgery happened nine days later.
His chest cavity was left open, and through a thin layer of gauze, Smith could see her child’s heart beating.
She said many parents of newborns groan about their baby’s constant crying, but she was desperate to hear Ayden’s wails.
“I didn’t hear my baby cry for almost a month. That’s a long time to not hear any sound from him,” she said. “It’s unnatural for a mother to leave the hospital and not take her baby with her.”
Outside of his surgeries — his second was at seven months — Ayden has had no major hospitalizations and developmentally he’s right on target.
He’s a regular preschooler, Smith said. He loves iced green tea, french fries, airplanes, and dinosaurs. He like to tumble, play, and wrestle — and his mother lets him.
There are some limitations and restrictions with his play if he gets a little winded but Smith said she follows his cardiologists’ advice: “Do not baby him. Do not coddle him. Don’t make him feel like he’s different because he’s sick. He needs to know that he’s still a child.”
Sometimes people will see the scar down his chest and apologize. Smith says she doesn’t want sympathy — just education.
“On the outside, a family is happy and smiling but you never know what battles they are facing,” she said. “I didn’t know what Ebstein’s anomaly was. I didn’t even go to nursing school and now I have all these medical terms in my day-to-day vocabulary.”
There are good days and there are bad days but the bad days are especially tough, Smith said, remembering times she has broken down in tears and questioned her strength: “I’m his mom. That’s my job. I’m supposed to make all of this better but I can’t make all of this better.”
Patients with Ebstein’s anomaly seldom reach the age of 50. Smith said she’s aware that Ayden may have a reduced life expectancy but she’s living as if his days are not numbered.
He may be too young to understand what Disney World is, Smith said, yet the trip will be a time for the family to go away for a while and for Ayden to have a connection with something he loves — airplanes.
“With the craziness of life and bills, sometimes you don’t get that time to just relax and really take a step back,” she said. “Let’s have those experiences. Let’s go see the world. Let’s take those chances. If we don’t have a long time together, I want the time we do have to be the absolute best.”
Laurie Hamame can be reached at 440-775-1611 or @HamameNews on Twitter.