February 14, 2009 WDN online version of the article shown above
Toddler’s teaching heart Friday, 13 February 2009 By KRISTA HAYES
Staff Writer
A Wapakoneta toddler is spending this Valentine’s Day trying to help others learn about a fatal heart condition — one he deals with every day in his struggle to survive.
Devin Stuttler, who was born Oct. 29, 2007, was diagnosed with hypoplastic left heart syndrome, a disease most people refer to as having half of a heart because the left side is so underdeveloped that it will never grow back, leaving the right side to do all of the work.
While her son is considered relatively healthy today, his mother, Tara Stuttler, said she will never forget how she felt that day after hearing that her son was diagnosed with hypoplastic left heart syndrome.
“We were very upset and couldn’t believe it was happening to us,” Tara said of her husband, Alan, and Devin’s brother, Craig, 5. “We just kept asking, why us? I would have given him my heart if that were an option.”
The family’s goal today is to help make people aware through celebrating National Congenital Heart Disease Awareness Day, today on Valentine’s Day. The Stuttlers provide information through their Web site, stuttlerfamily.weebly.com.
Through their trials, they have learned to deal with their personal tragedy.
“We now realize though that God has a plan and Devin will be just fine no matter what,” Tara said. “I believe everything happens for a reason and Devin’s situation is no exception to that belief. Our family has a lot of faith that Devin will make it through everything and lead a normal life one day.
“You just can’t prepare yourself for something like this,” she said. “Faith, hope and love have definitely been key. Trust in God is what has carried us through all of this.”
Devin’s parents recall the day he was born at Wilson Memorial Hospital, appearing to be perfectly healthy. The next day nurses realized his skin color taking on a purple hue so they decided to immediately send him to Dayton Children’s Hospital for an echo cardiogram to see if he was experiencing any heart problems.
“We knew by the expressions on everyone’s faces after the echo that things were really bad,” Tara Stuttler said. “The cardiologist on staff that day pulled my husband and I into a private room to describe Devin’s heart problem. He basically explained that Devin had hypoplastic left heart syndrome, a somewhat rare and very severe congenital heart defect.”
Tara said the options presented to them by the cardiologist were to take him home where he would die within days, wait for a donor heart in order for him to receive a transplant or send him to Cincinnati for a Norwood heart surgery procedure.
“He made us feel as though there was no hope for Devin, that we had a great chance of losing our newborn baby boy,” Tara said. “We were absolutely devastated.”
Tara’s family was in the waiting room, including her mother who called a relative who worked as a nurse at Nationwide Children’s Hospital, in Columbus, seeking advice.
“My cousin in Columbus informed us that there was a very special pediatric heart surgeon at Nationwide whose name was Dr. (Mark) Galantowicz. He and a cath doctor, Dr. (John) Cheatham pioneered the hybrid heart surgery procedure, which gave us more surgical options,” Tara said.
Later that evening, Devin’s parents requested their newborn be transported to Columbus. The next morning his parents, who arrived to the hospital on Oct. 29, had 24 hours to conduct research and decide on either the Norwood or hybrid procedure for their son.
“It was very, very difficult to find resources to help us make a decision in such a small amount of time, and there was no time for sleep,” Tara said. “We finally decided to go with the hybrid procedure for Devin because the first surgery was less invasive on him as a newborn and he would have what we considered to be the best doctors in the world operating on him.”
Devin underwent his first heart surgery on Nov. 5, at a week old, and was brought home for the first time on Nov. 14.
After their son was sent home, the Stuttlers had to make biweekly and eventually weekly visits to see Devin’s cardiologist, Dr. (Pamela) Ro, in Columbus, so they could keep an eye on his heart’s condition in order to determine how soon he would need his second procedure since the hybrid procedure consisted of three-staged surgeries.
Months later, Devin was slated to undergo his second procedure, open heart surgery, which had been scheduled for March 7, 2008.
“Devin’s heart ended up being very sick and they decided it would be best to place a stint in the narrowed problem area before doing the surgery,” Tara said. “That was a great decision because Devin struggled to recover just from a cath procedure, if he would have had the surgery, he probably wouldn’t be here today.”
Devin was released from the hospital on March 19. He later ended up having open heart surgery on April 9.
“He didn’t struggle quite as bad as he did with the cath procedure so we were sent home on April 17, 2008,” Tara said. “Since his last hospital visit we’ve only have to see his cardiologist every three months for EKG and echo check-ups. We plan to have his third surgery late in later summer or early fall of 2009 or spring of 2010.”
Today, she said the light of her life is as ornery as ever.
“I really think Devin’s strong attitude has helped him recover from everything he has been through so far,” Tara said. “You would never know he was a ‘heart baby’ other than his occasional color change when he gets upset or excited.
“Although he will never be cured, the surgeries are helping his heart function with pretty much just half a heart,” she said. “Later in life he may face the possibility of having a heart transplant.
“It’s hard to tell what his future holds because they didn’t operate on children like this until the early 1980s,” she said. “Even then, most hospitals would send the parents home to watch their child die within days. Thankfully, technology has come a long way and continues to do so.”
