Fontan patient inspires as pediatric cardiology fellow

Sometimes Taylor Houlihan, M.D., will tell a patient that she has a scar too—one very much like theirs, in fact.

For Houlihan, a pediatric resident and incoming pediatric cardiology fellow at University of Michigan Health, this simple act can feel like the best way to express sympathy and encouragement without making promises or drawing focus away from the patient.

Like some of the children she sees at C.S. Mott Children’s Hospital, Houlihan was diagnosed with congenital heart disease as an infant.

An echocardiogram at six months old detected tricuspid valve atresia, Dextro-Transposition of the great arteries, a bilateral superior vena cava, and dextrocardia.

When she was nearly two, Houlihan underwent a Fontan procedure, a palliative surgery that redirects blood in a person with one working ventricle.

While the surgery greatly improves outcomes for most patients, Fontan circulation—the way blood moves after this procedure—presents its own set of unique long-term challenges.

“Some don’t make it to their 20th birthday—some struggle from the start,” Houlihan said.

“And others, like me, really thrive. I’m still learning how to balance this; I’d never want my health journey to become the focus of a patient visit. The focus should always be on them.”

Despite not wanting to give false hope by overemphasizing her own story, Houlihan has embraced being a role model by chronicling on social media the highs and lows of life with Fontan circulation.

As a visible full-circle success story, she also wants to push her single-ventricle patients to set their sights high—a lesson her own doctors taught her growing up.

Houlihan describes her cardiologist growing up, Marie Gleason, M.D., of Children’s Hospital of Philadelphia, as an extended family member who dispensed empathetic encouragement and tough love in equal measure.

Exercise can be difficult for patients with Fontan circulation. but is important for improving quality of life.

Houlihan’s parents had been told early on, “Taylor may never be an Olympian, but she can do anything she wants to.”

And Gleason pushed Houlihan to excel at ballet, one of her foremost childhood passions outside of science and medicine.

“For patients with single ventricle circulation, it’s lifelong,” Houlihan said. “There are challenges, and it’s easy to lose yourself in the diagnosis and not see yourself apart from it. I’ve been there. But when you learn that it’s part of you but doesn’t define you or your limitations, you can push yourself to do far more than you thought possible.”

Houlihan doesn’t let her congenital heart disease define her, but she embraces her ability to be a source of hope for patients and their parents.

While attending Sidney Kimmel Medical College at Thomas Jefferson University, Houlihan was invited to speak at a conference and share her story.

Some of the doctors in attendance suggested she use social media to inspire others.

Houlihan launched the page “Fontan with a Future” on Facebook and Instagram.

There, she shares life updates and educates others about Fontan physiology.

Her social media presence has become so well known in the Fontan community that patients have recognized her in the halls of the hospital.

“I was overwhelmed by the positive responses,” Houlihan said.

“So many people reached out: ‘My child has this,’ ‘my sister has this,’ ‘I have this.’ It emboldened others to open up about their medical journeys.”

Two years ago, Houlihan was able to share a very specific experience as a Fontan patient: her pregnancy.

There can be unique challenges in pregnancy for women with single-ventricle circulation.

Houlihan detailed the lead-up to her daughter’s birth meticulously, relating it to gaps in the current medical literature.

It’s a gap she’s hoping to help address herself, working on Fontan pregnancy research with Kurt Schumacher, M.D., Division Director of Pediatrics-Cardiology at Michigan Medicine.

“Taylor is an incredibly impressive person,” Schumacher said.

“Channeling personal experience directly into research that will inform our field and potentially improve lives is something few people get the opportunity to do, and she is making an impact by doing it. We are very excited that she is continuing her training with us.”

Helping design research is one way Houlihan hopes to use her dual perspective as physician and patient to help the Fontan community.

Another way is to simply continue to set an example.

“I want families to know that a prenatal diagnosis doesn’t mean devastation,” Houlihan said.

“There is hope."

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