A little superhero overcomes a heart defect | Corewell Health

When Meaghan and Dan Kenny heard the results of an anatomical scan at 20 weeks pregnant, they were terrified.

Something was wrong with their baby’s heart.

The Kennys took the test at Corewell Health Helen DeVos Children’s Hospital Pediatric Clinic in Traverse City, Michigan, where they live.

“I was driving when I got the call with the results,” Meaghan said. “It was surprising to hear. I felt so…isolated.

“Shortly after, we went to Corewell Health’s Helen DeVos Children’s Hospital in Grand Rapids,” Dan said. “We met a pediatric team there and knew right away that we didn’t need to seek care anywhere else. We were in good hands.

Anatomical analysis of their baby – their first – revealed a condition called pulmonary atresia with an intact ventricular septum.

Pulmonary atresia is a Congenital heart defect. It happens 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 through the lungs and is forced to find another path.

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

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

A frightening prospect

The Kennys learned that their baby would need surgery shortly after birth.

James Kenny was born on May 7, 2019.

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

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

“Dividing our family was the hardest part,” Dan said. “We didn’t even know James yet.”

“I first met James when he entered NICU,” said Allison Amidon, nurse practitioner at Corewell Health. “Anytime parents get a fetal diagnosis like the Kennys, it’s scary.”

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

“We are doing what we can to keep families informed in detail every step of the way,” Amidon said.

The Kennys met with the pediatric team in a conference room to go over baby James’ care plan. They explained in detail the operation he would need, while showing images illustrating the procedure on a screen.

“It was scary,” Meaghan said. “But we had great confidence in our doctors.”

A successful hybrid procedure

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

Marcus Haw, MDdivision chief and director of cardiac surgery at Helen DeVos Children’s Hospital, explained the procedure.

“The surgical team opened his chest and passed a needle through the right ventricle,” Dr Haw said. “He punctured the pulmonary valve and passed a wire through it and placed two stents through the valve, creating a passage to improve blood flow.”

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

“Stents reduce this pressure so the heart can pump better,” Dr. Haw said.

Stents, Dr. Haw said, are not a permanent solution. When a baby grows, the heart grows. James would need surgery again as he grew older.

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

During James’ first few months, doctors closely monitored his oxygen levels. As her heart got bigger, the stents started to leak and her oxygen level dropped into the 80s.

It was time for his next operation, this time open-heart surgery.

“He seemed so healthy at that age,” Dan said. “It made it harder to get him back.”

“James was already in the high percentile for weight and height at that point,” Meaghan said. “He was crawling, had two teeth and ate real food.”

Dr Haw met the Kennys when James was 8 months old in January 2020.

“The initial stenting had been a success; the pressure on his heart had dropped to an acceptable level. But as he grew, his heart – the right atrium – started leaking as he outgrew the stents,” Dr Haw said.

A second operation

On February 19, 2020, James underwent open heart surgery.

This time, assisted by Dr. Baliulis, Dr. Haw placed the little boy on a bypass machine.

He removed the outgrown stents, severed the pulmonary artery, and attached a new donor pulmonary valve. The right atrium of James’s heart had grown larger, so he downsized and repaired the bicuspid valve.

Doctors closely monitored his oxygenation levels and blood pressure before removing the shunt equipment that was supporting James.

Once his heart stabilized, he moved to pediatric intensive care to recover.

When James returned home, his family watched him closely.

“We tell parents to call us if they see any changes,” Amidon said. “Color changes, weight gain that does not occur, rapid breathing, change in eating habits or poor diet, or if the child is very tired. We want to be informed of these changes.

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

We can win this

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

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

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

He won’t need heart surgery again until he’s a teenager, says Dr. Haw.

“Every time we see the nursing team at the hospital, they are all just amazing,” Meaghan said.

“On another level,” Dan agreed.