What’s in a number? Well, if you’re 12-year-old Devyn Emmons, it’s time. Time spent at Akron Children’s. The number “43” is how many surgeries he’s had to date with more on the way.
“I’m not sure why I started counting in the first place,” said Crystal Emmons, Devyn’s mom. “When he was in the NICU (neonatal intensive care unit) I think it helped me get through them – 1 done, 3 to go… It’s a big deal putting your child under for surgery and I’m thankful we’ve always had a team at the hospital to get us through.”
Devyn’s surgeries started just after birth. Four months before his due date, Devyn went into fetal distress. His umbilical cord was wrapped around his neck. After an emergency caesarian section, physicians acted quickly when they saw Devyn was born with gastroschisis, a hole that occurs in the abdominal wall allowing the intestines and sometimes other organs to grow and extend outside the body.
“No one knew of his condition beforehand so when I delivered, physicians used 13 rolls of plastic wrap to protect his organs during his transfer from Fisher Titus Medical Center in Norwalk to the NICU at Akron Children’s,” said Crystal. “He needed 4 surgeries while in the NICU and was among the first to use the hospital’s romo vac (a device to close wound drainage) which helped his stomach close little by little each day…After 4 months in the NICU, we finally got to go home.”
While still in the NICU, Crystal asked doctors why Devyn’s arms were so stiff and straight. Soon after, he was diagnosed with arthrogryposis, a congenital issue where joints are stuck in one position because the muscles around the joints are thin, weak, stiff or missing.
“Devyn’s medical condition was very complex given both of his conditions (gastroschisis and arthrogryposis),” said Dr. John Crow, chairman of the department of surgery at Akron Children’s. “Due to his fragile state and need for care, it was critically important his mom and grandparents were there to support him, just as it was for our care team to support Devyn and his family. This connection helps patients grow and thrive which Devyn certainly did.”
For the first few years of life, Devyn continued to have gastrointestinal issues and surgeries to help minimize problems. He also had more than a dozen surgeries and castings not only to increase mobility in his arms, but also to correct his 2 clubbed feet.
“He never crawled, just scooted until he started walking at age 4,” said Crystal. “After multiple surgeries, Devyn was finally able to bend his arms enough to touch his face for the first time at age 6… It was quite a moment.”
With Devyn’s arthrogryposis and clubbed feet surgeries behind them, Crystal thought maybe Devyn was turning a medical corner. But, the motility of his gastrointestinal (GI) tract started slowing down.
“Devyn’s gastrointestinal issues persisted throughout his childhood, requiring many days in our hospital for office visits and surgeries to help his system intake and digest food,” said Dr. Crow. “Devyn has a team of professionals at the hospital who do their best to help Devyn be his best…I feel blessed to have developed a close relationship with Devyn and his mother throughout his journey.”
During his time at Akron Children’s, Devyn has taken a flight on Air Bear and spent time with Drs. Crow, Murthy, Weiner, Riley Sr., Garcia and Ponsky, as well as countless nurses and social workers to get his body and system functioning at a level that allows him to go to school and participate in activities with his peers.
“Devyn gets lots of support from the Norwalk community and classmates,” said mom. “He plays tennis, basketball and even football. He loves playing and contributing to the Norwalk Jr. Truckers football team, which doesn’t allow full contact for his age group, as the field goal kicker.”
Devyn also gets support from Akron Children’s staff, and not just from his medical care team. Other departments have noticed Devyn’s familiar face and contagious personality at the hospital.
“He just got a hospital name badge from the security department at Akron Children’s so he thinks he’s really official now,” chuckled mom. “He also loves getting e-cards from friends and family and visits from the volunteers and house keeping staff while he’s at the hospital.”
As Devyn gets older, though, his curiosity about his ailments is growing, too.
“He goes to school so he realizes that his body works differently than others. He’s asking medical staff his own questions now, too, like why are you doing this; how are you going to do that…,” said mom. “His situation is challenging, but I’ve always told Devyn to push forward and finish what you start.”
To help, Devyn received a service dog, Kite, in 2012, thanks to his mom raising money for the 4 Paws for Ability organization. Kite accompanies Devyn to appointments and doesn’t leave his side at home. Lately, Kite has also been providing emotional support to Devyn.
“Devyn has a natural, outgoing personality and provides a sense of warmth when you’re around him,” said mom. “He’s been struggling with anxiety lately and Kite has been very important to Devyn’s success and helping him get through the emotional and physical obstacles he’s faced with.”
Some of this Devyn’s stress came in September 2017 when he had a 7-hour surgery to alleviate a bowel obstruction.
“Devyn has had so many surgeries on his intestines in the past, lesions have built up where portions of his bowel have been cut out, which made the surgery very, very challenging,” said mom. “Our big question now is how are we going to get his GI tract to keep working.”
For Devyn, there are 2 options to help his GI tract and each poses its own set of risks and problems. So, once again, Devyn and his family are relying on his team of care givers to help determine the best solution.
“I’m thankful I have such a great relationship with his doctors that we can talk openly about Devyn’s options, concerns and goals,” said mom. “My parents have been my rock through all the ups and downs of Devyn’s care. I don’t know how I’d manage without their support and love…Devyn’s GI issue is a big decision so I know we’ll be relying on everyone – family, surgeons, hospital volunteers – to get us through this next step in Devyn’s care.”