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.
In July 2013, our family of four crowded into a tiny room at the Women’s Health Clinic in Casper, Wyoming. We were so excited to find out if our third child would be a boy or a girl, and our daughters Adleigh and Oliviah had their own hopes. We had waited for this day for so long, and for our daughters, it seemed like an eternity.
The day had finally come, and we all celebrated the fact that we would welcome a baby boy.
Our excitement lasted just a few minutes, though, as our obstetrician noticed a “bump” underneath our baby boy’s right arm. We were quickly sent to Rocky Mountain Hospital for Children in Denver, Colorado. Doctors there were mesmerized by this “bump,” and kept a very close eye on it for the rest of the pregnancy.
Our miracle — Kollins Holbrook — arrived on October 16, 2013. Our team of over a dozen doctors had prepared us for the possibility that our baby might not survive and were ready to revive him at birth, but Kollins surprised everyone. He was thriving.
Just hours into the world, Kollins had his first of a lifetime of MRIs. His bump soon had an official name — cystic hygroma. Although very close to his heart and lungs, it didn’t pose an immediate threat to him internally.
We went home a few days later and were hopeful about getting a plan in place to remove Kollins’ bump and move on.
We soon found out Kollins’ condition was a much more complex situation than we had ever imagined. As he grew, so did the hygroma. We also were aware this meant the bigger it got, the closer it came to his internal organs.
Over the past few decades, more and more children with congenital heart defects have been receiving life-saving surgery soon after birth. As surgical techniques improve, some children who would have died within the first few weeks of life are able to survive — but many still have residual heart failure. Transplant is often the optimal therapy for such patients, but the number of hearts available to transplant has not changed much over the last several years.
“The number of patients listed for transplant is much greater than the number of donor hearts,” says Dr. Elizabeth Blume, director of the Heart Center’s Heart Failure program. “Due to this limitation, we’ve dedicated an entire service to optimizing care for children living with heart failure.”
In recent years, the 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.”
Each Monday for the next four weeks, Thriving is highlighting a very special Heart Center patient who was once listed for transplant, but was removed from the list thanks to successful medical management of her heart disease.