Regional Collaboration Helps Provide Life-Saving Surgery for Twin Boys

12/1/2020 - After Rachel Markle gave birth to her twin sons – Chase and Bentley – at 34 weeks at Crouse Hospital in Syracuse, NY, the hospital’s neonatologist detected that Chase had a heart murmur.

While the initial diagnoses wasn’t cause for concern, the hospital contacted Matthew Egan, M.D., a local pediatric cardiologist, to come perform an echocardiogram. Before he arrived at the hospital, however, he got a call from the cardiac sonographer:

“They told me to stop coming to the hospital because they found that both babies had Tetralogy of Fallot,” said Egan.

Tetralogy of Fallot is a condition which causes oxygen-poor blood to flow out of the heart and into the rest of the body. Left untreated, it can be fatal.

“It was a unique experience – to have twins with a heart problem that wasn’t detected beforehand. I had to deliver bad news that both had significant heart problems that would need surgery,” said Egan

The Markle family was able to take Chase and Bentley home from the hospital, but treatment would need to be arranged relatively quickly.

“When we came home from the NICU, you wouldn’t even know anything was wrong with them,” said Rachel, “but it was a condition that could’ve killed them in six months if they didn’t get surgery”

Fortunately, Egan had the resources and infrastructure to put the surgery in motion and keep the family in the upstate New York region. Egan participates in the Regional Pediatric Cardiology Program – a collaboration between Golisano Children’s Hospital (GCH) in Rochester, Oishei Children’s Hospital of Buffalo, Crouse Hospital, SUNY Upstate Medical University in Syracuse, and several referring providers in each city. Every week - on Tuesdays and Thursdays - cardiologists from these regions have a teleconference call to discuss kids who potentially need surgery.

“We present all the info at these conferences, including the echocardiogram images, advocate for the type of surgery and timing, and come to a shared decision,” said Egan.

This collaboration serves two critical purposes. First, it allows each case to be examined by a team of cardio-experts, each of whom offer valuable insight.

“You’re never just getting one opinion, you’re getting the opinions of the cardiologists from Buffalo, Rochester, and Syracuse and the surgery team,” said Egan. “One unique thing about cardiology is that every single defect is different, everyone has different backgrounds, and one thing we do well is weigh the different options and work together toward a solution.”

Second, the collaborative helps provide the best standard of care for children, keeps cardiology programs in all three regions viable, and prevents families from having to undergo difficult travel to neighboring regions for treatment.

“It’s tough when you have multiple, big medical systems trying to work together without competition getting in the way,” said Egan, “but if you don’t align, patients are going to have to travel five or six hours to get the care they would need. We want to show the community we’re doing the best thing for the patient.”

George Alfieris, M.D. director of pediatric surgery at GCH, typically has the final say on what surgeries are possible. In the case of Chase and Bentley, the need for tetralogy surgery – which involves widening the pulmonary valve and enlarging the passage to improve bloodflow - was clear. The major challenge involved timing: in order to assist the Markle family, the cardio group wanted to coordinate the operations on either consecutive days or the same day.

“We wanted to what was best for the family but keep it safe,” said Egan.

Fortunately, they were able to schedule the surgeries on the same day. The transition to GCH was smooth and Alfieris put the Markle family at ease, according to Rachel.

“He came in and said that he’d treat my kids as if they were his own kids, and if it were his kids he would’ve done this surgery. Because we hadn’t seen him before, we appreciated his confidence.”

The surgeries were successful, and the twins can now receive their post-op care in Syracuse, where Dr. Egan has seen them several times.

“Both kids are really thriving and doing great,” said Egan.

The success of this case – and many others like it – prove the viability of the Regional Pediatric Cardiology Program for providing the best surgical treatment for kids across the tri-city region while allowing families to get follow-up care close to home, and will also help build capacity for each region to expand services, according to Nader Atallah, M.D., program director for Regional Cardiology.

“This collaboration will allow us to pool our resources together in order to deliver consistent and effective care to children and adults with congenital heart disease across Upstate and Western New York, and we will also be able to develop new programs that would elevate our pediatric cardiac services to the level provided at larger, nationally recognized programs,” he said.