A young superhero defeats a heart defect Corwell Health

When Megan and Dan Kinney heard the results of the autopsy scan at 20 weeks pregnant, they were horrified.

There was something wrong with their child’s heart.

Kines took the test at Corewell Health’s Children’s Clinic at Helen DeVos Children’s Hospital In Traverse City, Michigan where they live.

“I was driving when I got the call with the results,” Megan said. “It was amazing to hear that. I felt… isolated.”

A little later we headed to Corewell Health Helen DeVos Children’s Hospital In Grand Rapids,” Dan said. “We met the pediatric team there and knew then and there was no need to look for care anywhere else. We were in good hands.”

An autopsy scan of their child — their first — indicated a condition called pulmonary atresia with intact ventricular septum.

Pulmonary atresia is Congenital heart defect. It occurs when the heart of the fetus does not form properly.

The pulmonary valve connects the right ventricle of the heart and the main pulmonary artery, which carries blood to the lungs.

With pulmonary atresia, this valve does not work properly. The blood does not pass into the lungs and is forced to find another way.

This can prevent the baby’s cells from receiving enough oxygen.

The defect forms in the first eight weeks of life, but the cause is unknown. Without treatment, a child born with pulmonary atresia cannot live long.

A frightening prospect

The Kenneys were told their baby would need an operation shortly after his birth.

James Kenny was born on May 7, 2019.

“Labour was induced a week early so I could be at Helen DeVos Children’s Hospital when James was born,” Megan said. “He weighed 6 pounds, 7 ounces.”

Baby James was immediately transferred to the neonatal intensive care unit.

“This was the hardest part about splitting our family up,” Dan said. “We don’t even know James yet.”

“I first met James when he came into the NICU,” said Allison Amidon, a nurse practitioner with Corewell Health. “Anytime parents get a diagnosis of a fetus like the Keynes did, it’s scary.”

She said there was a lot of information for her to take in.

“We do what we can to keep families informed every step of the way,” Amidon said.

Kines met the pediatrics team in a conference room to discuss a plan for baby James’ care. They explained the surgery he would need in detail, while showing pictures showing the procedure on a screen.

“It was scary,” Megan said. “But we had a lot of faith in our doctors.”

Successful hybrid procedure

On May 10, 2019, at just three days old, baby James underwent his first surgery, a hybrid operation.

Marcus Howe, MDHelen DeVos, chief of department and director of cardiac surgery at Children’s Hospital, explained the procedure.

“The surgical team opened his chest and passed a needle into his right ventricle,” Dr. Howe said. “He punctured the pulmonary valve, passed a wire through it, and placed two stents across the valve, which created a passageway to improve blood flow.”

When you have this condition, he said, the right chamber of the heart becomes thick and muscular because of the pressure.

“Stents lower that pressure so the heart can pump blood better,” Dr. Howe said.

Stents aren’t a permanent solution, Dr. Howe said. As the child grows, the heart grows. James will need surgery again as he’s getting older.

James remained in the pediatric cardiovascular intensive care unit until May 27, 2019.

During James’ first months, doctors closely monitored his oxygen levels. As his heart grew older, stents began to leak and his oxygen level dropped into the 80s.

It’s time for the next surgery – this time open heart surgery.

“He seemed healthy at that age,” Dan said. “It made it difficult to get him back in there.”

“James was already in the high weight and height percentile by that time,” Megan said. “He was crawling, had teeth, and ate real food.”

Dr. Howe met Kines when James was 8 months old in January 2020.

“The initial stenting was successful; the pressure on his heart has dropped to an acceptable level. But as he grew, his heart — the right atrium — began to leak as it got bigger than the stents,” Dr. Howe said.

A second surgery

February 19, 2020 James had open heart surgery.

This time, with the help of Dr. Balliolis, Dr. Howe put the little boy on the bypass machine.

He removed the bulging stents, sectioned the pulmonary artery, and attached a new pulmonary valve from a donor. The right atrium of James’ heart was enlarged, so he reduced its size and repaired the bicuspid valve.

Doctors closely monitored oxygen levels and blood pressure before removing the bypass device that supported James.

After his heart was stabilized, he was transferred to the pediatric intensive care unit to recover.

When James returns home, his family is watching him closely.

“We tell parents to contact us if they see any changes,” Amidon said. Changes in colour, no weight gain, rapid breathing, change in eating habits or not eating well, or if the child is very tired. We want to know about any such changes.”

James showed none of these signs. He was the picture of health and continued to thrive.

We can win this

James, now three and a half years old, has a new best friend – his little brother, Emerson.

“He’s a happy guy,” Megan said. “He loves playing with our dog, Daisy, and running around the park and talking – he’s such a great talker. He’ll play Candyland and Chutes & Ladders with his little brother and say to him – Maybe we can win this. And he loves superheroes.”

This includes superheroes at Helen DeVos Children’s Hospital, where every six months James goes for a check-up at the Traverse City clinic.

Dr. Howe says he will not need heart surgery again until his teens.

“When we see the nursing staff at the hospital, they are all just amazing,” Megan said.

“On another level,” Dan nodded.