Summertime is the season for children to play and have fun. For kids living with complex or rare conditions or injuries, that ability is never taken for granted. At Shriners Children’s, our dedicated medical professionals work tirelessly to provide the best care possible to help patients reach their full potential – and have fun!
A tennis ace
Maisy was born without fingers on her right hand. She first came to Shriners Children’s when she was 3 months old, but it wasn’t until the age of 8 that she ever thought prostheses could help her. She had managed her world just fine without them, which is not uncommon for children with an upper limb deficiency.
As Maisy became interested in activities like archery and tennis, her curiosity about prosthetic devices and how they could help her grew.
“Maisy started tennis lessons last summer with our town’s community tennis association,” Maisy’s mom, Angie, said. “She rigged up her own little hand device with a wrist brace and a spoon, but it had its limitations.”
As Maisy progressed through her tennis lessons, one of her goals was to be able to toss the ball for her serve, so her family turned to the Pediatric Orthotic and Prosthetic Service (POPS), LLC, department at Shriners Children’s New England for a device that would be more practical and durable. POPS designs, manufactures and fits orthotics and prosthetics for children of all ages, from infants to young adults. POPS departments are located throughout the Shriners Children’s system.
Maisy’s prosthetist, Elizabeth Selgrade, MSPO, CPO, thought a device called M-Fingers would be a great fit.
“M-Fingers are mechanical fingers that are mounted on a custom wrist/hand brace,” Selgrade explained. “A thin cord goes through the fingers, so when Maisy flexes her wrist, the cord is pulled tight, and the fingers close and conform around objects. When she extends her wrist, the fingers open back up.”
The M-Fingers technology is relatively new, and earlier this year Maisy became the first Shriners Children’s New England patient to receive the device. She brought her tennis racket to her appointment. Within minutes, she was able to use her M-Fingers device to pick up the ball, toss it up and swing with confidence.
“We love all the staff at Shriners Children’s,” said Angie. “Maisy always leaves her visits feeling very special.”
Liam, 10, is a competitive wheelchair basketball player and defines himself as an athlete. Recently, he’s taken an interest in practicing Brazilian Jiu Jitsu. Practitioners of this art spend most of their time rolling on the ground, working to successfully overtake an opponent through learned tactics. The movement is called “ground-rolling.”
Liam was born with myelomeningocele, which is a serious form of spina bifida in which the spinal column does not develop and close in a typical manner early in fetal development. This causes injury to the spinal cord in utero or at birth. Liam has limited muscle function and sensation in his legs, from the knees down. While he can walk with crutches, it takes great effort and can leave him winded.
So, Liam uses a chair to be mobile at school and in public. At home, though, he can be seen climbing, scooting and crawling.
The type of movement Brazilian Jiu Jitsu uses makes the sport a great fit for Liam.
“Since I’m on the ground, it’s easy for me to do Brazilian Jiu Jitsu,” he said. “Sometimes, they’ll adjust the moves for me. I like that no one treats me different, and I like the moves that we learn.”
Now his goal is to become stronger and more experienced in fighting.
“We have a motto,” said Liam’s father, Rob. “If there’s something you want to do, the first question we always ask is: ‘Is it possible?’ The answer is almost always yes. The how is out there. We just have to work long and hard enough to find it.”
Liam’s ability to adapt is part of what helps him succeed and have fun.
“Liam’s arms remain very strong, and he does not need to rely on hip strength or bracing to participate in Jiu Jitsu, as he would to perform a standing activity,” said Perry Schoenecker, M.D., his orthopedic surgeon at Shriners Children’s St. Louis. “By competing in activities that primarily require coordination, agility and speed in kneeling, he can find success!”
For Liam, Brazilian Jiu Jitsu gives him a chance to be who he is. “One time, I took down someone who was a higher belt than me. I got him in a hold! It made me feel really good – and strong,” Liam said. “Just because you have a disability, doesn’t mean you can’t chase your dreams. My wheelchair doesn’t define me. I’m an athlete.”
Dr. Schoenecker said, “I hope other patients and families can realize that finding something fun that their child enjoys can lead to improved confidence to try bigger and better things in life. This positive attitude will take Liam through the rest of his life to confidence in adulthood.”
Hitting a homerun
Hallie has been playing baseball for the local Toyota Miracle League, an all-inclusive baseball experience with a fully accessible field, for more than a decade. It’s a perfect place for Hallie, who uses a walker, to get exercise, be part of a team and develop a passion for the game.
Hallie was born six weeks prematurely, and her mom, Ginger, noticed she was not meeting typical age-appropriate milestones as a baby. “She was delayed rolling over, crawling, pulling to stand and walking with assistance,” Ginger said.
When she was 6 months old, Hallie was diagnosed with cerebral palsy and periventricular leukomalacia, which is white matter brain loss on the right side. Hallie came to Shriners Children’s Lexington for the first time when she was about 4, for orthotics.
“There are things Hallie just can’t do without hands-on assistance, and she gets left out sometimes,” Ginger said. “That is devastating at times. We conquer obstacles as they come and figure out a way that she can be included. She cannot walk without assistance, as she has no balance. She can walk with a walker and uses a wheelchair for longer distances.”
At 13, Hallie started limping. She was complaining of pain when walking and needed to use her wheelchair more frequently.
Ryan Muchow, M.D., discovered Hallie’s right hip was slipping out of the socket and recommended surgery to repair her hip. In 2018, Hallie had a surgery where the femur bone was cut, and the ball part of her hip was directed back into the socket. Cuts in her pelvic bone also helped redirect the socket and create better positioning. A plate and screws were used to fix her hip and pelvis. Her femur was also cut to make her legs more even in length.
Hallie was soon able to return to the activities she loves, like attending school, playing for the Miracle League baseball team and horseback riding.
“Dr. Muchow was open and honest with her about the procedure and expectations,” Ginger said. “She worked hard to build up her strength before surgery. His advice was, ‘If you go in strong, it will help you come out strong.’”
Now 17, Hallie reports her hip feels great, and she is able to remain active.
She is in high school and participates in a dual-credit program focused on animal science. When she graduates high school, she hopes to pursue a career as a veterinary technician. Ginger said Shriners Children’s Lexington has been an important part of Hallie’s success.
“Her hip rebuild has made her pain-free,” she said. “Being able to run and play without pain is a great thing. To have the confidence in your body also feels good … to know that you can run the bases with your friends makes for a great day at the ballpark.”
A Playful Path Toward Healing
Child life specialists skillfully incorporate play in the clinical setting
With their knowledge, training and understanding of child development, child life specialists work directly with patients and their families to help them feel more comfortable, calm and confident when visiting Shriners Children’s for a medical procedure. They provide support and education as they engage patients in play throughout all aspects of their hospital experience.
Child life specialists work with patients and families to develop coping skills. Engaging patients in medical play gives a child the opportunity to see, touch and feel many of the items they will see and experience on the day of surgery. Incorporating play, especially in pre-op and the operating room, promotes confidence in a potentially stressful environment. Play experiences also help children express fears and manage misconceptions of medical procedures.
“To make the anesthesia mask less scary, we may play with it by practicing deep breaths on a stuffed animal,” said Danielle, a child life specialist at Shriners Children’s Boston. “Offering choices or roles gives the whole family a sense of control and empowerment in a situation that can be overwhelming.”