In recent years, the Boston Children’s Hospital Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”
The following is part two of a four-part series featuring Heart Center patients who were once listed for transplant but were removed thanks to successful medical management of his or her heart disease.
Maverick Chenkus was born with hypoplastic left heart syndrome (HLHS), a very serious heart condition in which the left side of the heart is underdeveloped.
Soon after birth, Maverick had his first open-heart surgery but then developed heart failure. He spent his first 8 months fighting for his life at a hospital near his home in New York. Doctors there told his parents, Nikki and Charlie, their son would need a heart transplant in order to survive. But the doctors refused to place Maverick on the heart transplant list.
I’ve been a Pawprints volunteer for almost two years.
My owner thought I was going to get kicked out on my very first visit. There was a little girl who was quite sick. She was 2 or 3 and hadn’t walked for a while. Her Mom had her squeezed between her knees.
I edged up to the little girl, and she draped herself over me. Mom let her go, and the girl started walking with me.
A nurse walked in and shrieked. Uh-oh.
Then she told us the little girl hadn’t walked for months.
Two weeks later when we returned, the same little girl ran down the hallway toward me. Mom told me she hadn’t stopped walking since our last visit.
What else do I like about my job?
It’s great seeing people over time and developing a relationship with kids who are here a long time.
I like to flop over on my back, so kids can rub my tummy. I love tummy rubs.
Caring for patients is a true team effort. Care Team highlights the dedication of the people throughout Boston Children’s who do their part to comfort and support patient families each and every day.
Four-year-old Aiden Quinn is looking forward to his birthday celebration on Nov. 22. There will be plenty of cake, treats and friends. One friend sure to be right by his side is Aiden’s sidekick, namesake, best friend and travelling companion — his Aiden doll.
Aiden the boy was born with a radial longitudinal deficiency of his forearm and hand. He had no radial bone — one of the forearm bones in his left arm. The ulna — his other forearm bone — didn’t grow properly either, and his left thumb had no muscles or bones.
Aiden the doll is a hand-crocheted toy that sprung to life on April 18. The boy and doll share a name and a mission: raising awareness about limb differences.
“I wanted to find a way to connect kids with limb differences,” explains Aiden’s mother Jennifer.
Aiden the baby
Though Aiden the doll is just a few months old, the idea of connecting families of children with limb differences stretches back several years to when Jennifer was pregnant with Aiden.
A prenatal ultrasound showed the deformity in Aiden’s left arm. “I was scared and helpless and alone, and I needed answers,” recalls Jennifer.
The Long Island, New York mom started looking for specialty care for her unborn son. “The deformity is rare enough that doctors didn’t know about it, or they were intimidated by babies,” she says.
“It gave us peace of mind. He answered our questions, and we felt more secure,” Jennifer says.
Aiden the boy
In the last five years, Aiden has undergone six surgeries with Waters. The surgical goal for kids with radial ray deficiencies, says Waters, is to improve both function and appearance.
Those surgeries have not only repaired Aiden’s left arm and hand, they also have strengthened his character and inspired Jennifer to raise awareness about limb differences and provide support for families like hers. She created the Aiden doll to help her achieve that goal.
“Our son Aiden is happy, creative and goofy. He wears his heart on his sleeve and loves to sing and dance. He might be a bit headstrong, but that determination gets him through,” says Jennifer.
Jennifer hopes that Aiden the doll can help infuse a similar spirit of determination, strength and pride in other children with limb differences.
“I’m astonished by how Aiden manages to do things,” Jennifer continues. Aiden has found a way to peel a banana using his pinky and can even out-peel his 3-year-old brother.
Aiden the escape artist
Jennifer may not be the only one astonished by her son.
“Dr. Waters calls him his most trying patient,” jokes Jennifer.
Aiden managed to wriggle out of two casts placed after wrist centralization (correcting the significant deviation of the wrist) and thumb pollicization (making a thumb out of his index finger).
“One or two out of every 500 kids can figure out how to get out of a cast. Aiden is one of those kids,” says Waters. “It can be quite a burden for families like the Quinns, who aren’t close to Boston.”
Waters works a local orthopedic surgeon closer to the Quinn’s home in Long Island. The local physician manages some aspects of Aiden’s care, which helps the family minimize the number of trips to Boston to for Aiden’s treatment.
Aiden the doll
As the Quinn family brainstormed ways to raise awareness about limb differences, Jennifer reached out to Tani Correia, a crochet artist who designed and donated two dolls to Limbtastic, the limb-differences awareness, support and advocacy organization Jennifer founded.
Tani mailed the dolls to the Quinn family, and Aiden promptly named the dolls after himself.
One doll hangs out with Aiden. They go to the playground and preschool together, and the doll even traveled with Aiden and his parents to his most recent appointment with Waters.
The other Aiden doll is a jet setter and travels across the U.S., visiting children with limb differences, spending a week with each family, who then record the visit in a notebook that travels with the doll.
“It’s amazing to see how many lives the doll has touched,” says Jennifer. In the summer of 2015, Aiden the doll traveled to Camp Joy, which is sponsored by Amputee Coalition, and met 115 campers and 33 counselors with a limb loss or limb difference.
“These kind of organizations and networks, with families supporting each other and working together to raise awareness, can really help children reach their potential and families realize they aren’t alone,” says Waters.