Daughter of pro hockey player faces off against serious heart condition in Boston

by Justine Varieur on February 5, 2014

Professional hockey players are known for physical toughness and durable spirit. As one example, the left-winger of the Columbus Blue Jackets, Nick Foligno along his wife Janelle, recently took their fight off the ice to ensure their infant daughter received the best heart surgery care in the country.

Milana

Milana’s heart valve condition was not discovered in utero, so she was born seemingly healthy to her loving parents. The first sign that Milana was not as perfect as she looked was 24 hours after birth when she failed the mandatory pulse oximetry test, which measures the oxygen level in the blood. The hospital followed up with an echocardiogram that revealed a severe mitral valve problem. Nick and Janelle were informed that their daughter would need surgery at some point in her young life.

The family was discharged in order for Milana to grow, but she struggled and a week later, she was readmitted to their local hospital. They managed her condition with medicines, trying to prolong her surgery until she got just a little bigger. Unfortunately, she wasn’t getting better and wasn’t eating enough to be healthy.

“When the doctors realized that she wasn’t able to thrive without surgery, it became clear it couldn’t be prolonged anymore,” says Janelle. “Of course, we were so emotional. This whole journey has been such an emotion roller coaster, with so many ups and downs.”

Milana and Janelle

Janelle and Nick took to the Internet for a more comprehensive search about optimal treatment for babies born with this mitral valve condition. They also looked to family and friends, one of whom recommended Boston Children’s Heart Center, after her daughter had a previous successful heart valve surgery there.

“The traditional treatment for valves that are beyond repair is placement of a mechanical valve, which has many problems,” says Sitaram Emani, MD, director of Complex Biventricular Repair Program at Boston Children’s. “Their Internet search led the Foligno family to stories about our development of a replacement mitral valve that can expand as the child grows. Both Nick and Janelle were proactive about their daughter’s care and called us directly to speak about her case.”

The biggest concern about Milana and her complex surgery was her size and age, but after speaking with Boston Children’s Wayne Tworetsky, MD, and Emani, the Folignos felt confident that they could safely perform the procedure, specifically because this unique replacement valve expands as the child grows.

Boston Children’s modifications to the Melody valve, an expandable prosthetic valve typically used in children who need a new pulmonary valve, has opened up “opportunities to carry out mitral valve replacement in more children and at an earlier time point than has historically been possible,” Emani states. “Mechanical valve repair simply results in poorer long-term outcomes. We thought Milana was a perfect candidate for this procedure with an expandable valve because the complexity of her condition made successful valve repair unlikely.”

Nick flew with his infant on the medical air ambulance on a Tuesday, and the surgery took place on Friday. “That Friday was the longest day of our lives,” Janelle says. “We didn’t know what to expect in terms of recovery, but she has been doing exceptionally well, surpassing all the doctors’ expectations. But for us, she is like a brand new baby because her breathing and eating have greatly improved, and her temperament is entirely different. We all just feel lighter, even though there will be more obstacles ahead.”

As the Ottawa Sun reported, Nick missed a game to be with his family on that day, and even his teammates have supported his decision. “We hate to see someone going through that who we’re really close with.…It kind of puts hockey in perspective,” defenceman Jack Johnson told the Sun.

Sitaram Emani, MD

As regards longer-term outcomes, the surgeons started implanting these expandable Melody valves about three-and-a-half years ago in the mitral position, and they are already outperforming existing valves in terms of durability and performance. (Existing fixed diameter valves may only last one to two years.) The goal of Boston Children’s cardiac surgeons is to further reduce the number of reoperations required for these patients.

“Milana’s successful outcome is just as much attributable to parents who are proactive about their child’s care—those who use social media and appropriate patient advocates to learn more about the best care that can ultimately result in the best outcomes,” Emani says.

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