Necrotizing Enterocolitis: Aiden's Story
Patient Story Highlights
- Aiden was born a preemie and became gravely ill with a disease that affected the intestines of premature babies.
- He underwent multiple surgeries, including the removal of most of his small intestine and needed a tracheostomy due to a chronic lung condition.
- His mom, Karina, ordered T-shirts for the NICU staff to wear with a little dinosaur with a trach in its neck on the day of Aiden’s tracheostomy, which received 76 orders, and within a week after the surgery, Aiden began to smile.
She’s making a mental list of things she needs to pack before leaving. Leaving the NICU with Aiden. She can hardly believe it’s happening.
Her boy’s struggle has been long, and his comeback — in the neighborhood of miraculous.
“We see sick babies every day,” says Aliza Bonvallat, R.N., Aiden’s primary care nurse. “I have not met one person who has not been amazed by Aiden.”
Aiden was born a preemie, weighing 1 pound, 12 ounces, at a Sarasota hospital. Within the first few weeks of his life, he became gravely ill with something called necrotizing enterocolitis (NEC), a disease that affects the intestines of premature babies.
Aiden was intubated and airlifted to Johns Hopkins All Children’s Hospital, where he would undergo multiple surgeries, including the removal of most of his small intestine.
As the weeks tick by, with skilled surgeons and doting care from his doctors and nurses, including the full talents of the hospital’s intestinal rehabilitation therapy team, Aiden begins to get stronger.
“So much stress, so much sickness for him,” says his mom, Karina. “But he is a fighter.
“Now he is on full feeds formula. His tummy is working fine.”
But there would be other hurdles to overcome.
Aiden has a chronic lung condition, also common in premature infants. He has tracheomalacia, which is a narrowing or collapsing of the airway as he tries to breathe. Breathing has been a struggle for this little boy.
Doctors gently advise that Aiden needs a tracheostomy. This can be a big hurdle for parents.
“It was an absolute ‘no’ from his mom for a long, long time,” says Bonvallat.
“I wouldn’t even allow the word to be said in the room,” Karina says. “It was not up for discussion.”
But, slowly, Karina begins to come around. … She begins to understand the comfort and safety a trach could provide for her child. She softens to the idea. She accepts it with her head, if not yet her heart.
As the day of Aiden’s surgery approaches, Aiden’s mom muses with her nurse about what she can do to lighten her mood a bit.
She’s seen a T-shirt design online … one with a little dinosaur with a trach in its neck. The shirt reads “Tracheosaurus.”
“When he was on CPAP (continuous positive airway pressure) he would make these little roaring noises,” Karina says. “I used to teasingly ask him, ‘Are you my little dinosaur?’”
She might order a couple for family. Would one or two nurses be interested in wearing one?
Nurse Bonvallat loves the idea, and she takes things a step further. She shares the T-shirt concept with the broader clinical team. Would anyone want to order one?
They do. In droves.
Bonvallat receives 76 orders of “tracheosaurus” T-shirts in support of this beloved little boy. A local T-shirt designer and Etsy artist work overtime to get the orders done in time for Aiden’s surgery day, even making a tiny one for him to wear.
On the day of Aiden’s tracheostomy, the floor of the NICU resembles something from the Mesozoic era. Dinosaur T-shirts roam the halls — with “Team Aiden” across the bottom … a quiet show of solidarity for a baby who has won their hearts.
Within a week after Aiden’s tracheostomy, something wonderful happens.
Aiden begins to smile, really smile, for the first time.
“He is a totally different baby,” Karina says. “I kid you not. He loves people, he’ll smile at you and blow kisses.”
As difficult as it has been, Karina believes the tracheostomy was the best decision she has ever made for her child.
Now, this boy who has never experienced sunshine but has given so much of it to others, is leaving the NICU.
“I’m ready to show him what the world has to offer,” Karina said. “It’s time we take our little tracheosaurus home.”
Intestinal Rehabilitation Therapy at Johns Hopkins All Children's Hospital
The Intestinal Rehabilitation Program team at Johns Hopkins All Children's Hospital in St. Petersburg, Florida, provides treatment and management for patients with intestinal disorders, including short bowel syndrome (also called intestinal failure or short gut syndrome). Children with short bowel syndrome require specialized nutritional support and long-term follow-up care.