In retrospect it all happened so fast.
Linda and Ryan Amstutz watched in disbelief as their 3-year-old son, Colton, went from his normal, happy life of perpetual motion to his admission to pediatric intensive care, where doctors told them his young heart was failing and he might need to be put on the list for transplant. And all of this was just in the span of a week.
But thanks to seamless care coordination between two hospital systems in northeast Ohio, Colton got a new heart and a new lease on life in the same week he celebrated his 4th birthday.
“It all started on a Saturday, May 19, 2018, when Colton, who was rarely sick, began screaming in pain that his belly hurt,” said Linda. “He calmed down, and we thought his pain had subsided. But, later that evening, the pain returned. He was screaming with excruciating pain and breathing faster than normal. We knew something was wrong.”
Linda rushed Colton to an ER near their home in Navarre, while Ryan stayed home with their daughter, Charlotte, who was then 10 months old. As his breathing worsened, Colton was transported to Akron Children’s Pediatric Intensive Care Unit, where he was given oxygen and pneumonia was ruled out as the cause of his illness.
By Sunday evening, an echocardiogram revealed Colton’s heart was enlarged and not pumping well. The team of pediatric cardiologists and intensivists suspected the cause was viral myocarditis, which could have been triggered by a stomach flu Colton had several weeks prior.
“Drs. (Vivek) Malhotra and (Patricia) Raimer did such a wonderful job of explaining things to us and patiently answered our questions,” said Linda. “Still, within the next 2 days, his heart function was not improving and his liver and kidneys were also starting to fail.”
The clinical team recommended Colton be placed on extracorporeal membrane oxygenation (ECMO), a heart/lung bypass treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream.
In 2014, Akron Children’s and Cleveland Clinic signed an affiliation agreement, bringing together their pediatric cardiovascular surgeons and adult congenital heart specialists for weekly meetings to collaborate on challenging cases. The affiliation has been so successful the 2 hospital systems recently announced they were extending and expanding the affiliation to encompass the full scope of their pediatric cardiology programs.
Cardiologists and surgeons from Akron Children’s and Cleveland Clinic were already consulting on Colton’s case when it was decided to transport him to Cleveland Clinic.
He was the first patient at Akron Children’s and the first pediatric patient at Cleveland Clinic to be transported while on ECMO.
A few days after officially going on the transplant list, Colton was put on the Berlin heart, a ventricular assist device which takes over the work of one or both sides of a child’s heart, while waiting for a donor heart.
“We were told the typical wait for a heart is 6 to 9 months,” said Linda. “Colton was slowly allowed to wake up while on the Berlin heart. His breathing tube was removed and, after 3 and a half weeks, I was finally able to hold him.”
Doctors and nurses joined the family on Aug. 20 to celebrate Colton’s 4th birthday party.
Three days later, they got the word a heart was available and on its way to the Clinic. Fortunately, their wait would be 12 weeks rather than 6 to 9 months.
Thanks to the Berlin heart, Colton was already stronger when he received his new heart, said Dr. Robert Stewart, of Akron Children’s, who performed the transplant together with Dr. Hani Najm, of Cleveland Clinic.
“We will always consider Aug. 24 Colton’s second birthday,” said Linda. “That surgery gave him a second chance at life.”
Colton spent 3 weeks at the Clinic following his transplant, and a week at its pediatric residential rehabilitation hospital.
Every day, he got stronger.
“The staff was incredible,” said Linda. “Colton would have to be connected to IVs but he was so thrilled to leave his room and be pulled in a Little Tikes truck,” said Linda. “He got to blow bubbles, play outside with sidewalk chalk and just be a kid again.”
Colton finally got to go home on Sept. 24.
“The look on his face was priceless,” said Linda. “He was so excited to see his home, his sister, his toys. He wanted to touch everything. The thing he wanted to do most was to play outside. He wanted to ride his bike, swing and play with rocks like every 4-year-old boy.”
Just prior to his transplant surgery, Colton and his parents underwent genetic testing to learn more about a possible cause behind his heart failure.
“Testing confirmed the presence of a genetic variant, which caused the mitochondria, the powerhouse of cells, to malfunction,” said Dr. Gerard Boyle, medical director of Pediatric Heart Failure and Transplant Services at Cleveland Clinic. “This, in turn, weakened the heart muscle, causing it to fail.”
Dr. Boyle said the genetic variant in Colton’s case is extremely rare and unpredictable, and only a handful of patients at the Clinic have been transplanted for mitochondrial defects.
The family spent most of the fall and winter keeping Colton home, and safe from germs. He takes quite a few medications, including those to prevent his body from rejecting his new heart, and will continue to need to do so for the rest of his life.
“Colton is mature beyond years when it comes to taking his medicine,” said Linda. “He tells people it’s to ‘keep my heart healthy,’ and he points to the scars on his chest and knows the story behind each one like, ‘This is where I got my chest tube’ and ‘This is where I got my new heart.’”
“Colton’s case is a wonderful example of the benefit of a regionalized pediatric cardiology program,” said Dr. Stewart. “You would not want to duplicate an uncommon surgical procedure like heart transplant because it’s better to have one team build on that specialized expertise. Yet, you do want a large cohesive network of cardiologists in as many places as possible so children can get diagnosed and treated for the most common heart problems close to home. That’s what this collaboration provides.”
Linda and Ryan share their story with the goal of offering hope to other parents who learn their children have been diagnosed with congenital heart defects, and especially those awaiting transplant.
“It was reassuring to see the teamwork – it was amazingly seamless – and know everyone was working together for Colton,” said Linda, noting that they felt fortunate to live in Northeast Ohio and in close proximity to Akron Children’s and Cleveland Clinic.
“This was not an easy journey but we feel God has big plans for our son,” said Ryan. “Having been through something like this, I know we all appreciate every day we are given. We are thankful for all of the team members who helped save Colton’s life and get him back home, including the emergency room doctors who recognized there was something critically wrong, the doctors and nurses at Akron Children’s who helped keep Colton alive, the transport team who got him to Cleveland safely, and the doctors and nurses who took excellent care of him, especially his surgeons Drs. Stewart and Najm, and Dr. Boyle, who led the transplant/cardiac team. We are forever grateful.”