Following Her Heart: Marissa's Story

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Marissa was diagnosed with six complex congenital heart defects just a few short hours after her birth, and had the first of three open-heart surgeries at only three days old. Now, the 26-year-old receives care at the Philadelphia Adult Congenital Heart Center, a joint program between Children’s Hospital of Philadelphia (CHOP) and Penn Medicine Health System. As a clinical nurse specialist fellow at the Cardiac Care Unit at CHOP, Marissa draws on her life experience to educate and advocate for her patients, in particular those transitioning into the more complex world of adult cardiac care.

Following Her Heart: Marissa's Story Marissa was born in southern New Jersey, at the same hospital where her mom was a nurse. Just a few hours after birth, her mom noticed that Marissa’s color was off, and she “looked blue.” When her pulse oximetry readings were measured in the low 70s (normal hovers around 100), a specialist was brought in to examine Marissa’s heart.

Tests revealed that Marissa had six complex congenital heart defects, which fell under the category of single ventricle heart defects. Several abnormalities can cause single ventricle defects, but the common outcome is that only one of the two lower chambers in the heart can pump blood.

Thirty years ago, patients with this diagnosis did not survive past infancy. Now, successful treatment involves three open-heart surgeries, a series known as single ventricle palliation, performed in the first years of life.

“My six defects kind of ended up looking like something called hypoplastic left heart syndrome (HLHS), but not exactly,” Marissa says. “Treating them with single ventricle palliation was the most appropriate [surgical] option at that time.”

Three surgeries to address six defects

Marissa’s single-ventricle palliation surgeries took place at a hospital near her family’s New Jersey home. In the first operation, performed when she was three days old, doctors installed a Blalock-Thomas-Taussig (BTT) shunt. At eight months old, Marissa had the Hemi-Fontan surgery. Marissa had her final major open-heart surgery — the Fontan procedure — at 22 months old.

Together, these three surgeries “send [deoxygenated] blood flow passively into the lungs, as opposed to a healthy heart, where half the heart would be pumping to the lungs and the other half to the body,” Marissa explains.

Navigating the transition to adult care

Following Her Heart: Marissa's Story Marissa continued her pediatric cardiac care until 2017 with the same cardiologist who had treated her since infancy. She then transitioned her care to Emily Sue Ruckdeschel, MD, at the Philadelphia Adult Congenital Heart Center.

“A lot of patients don't want to leave the pediatric side because they've literally grown up with their cardiologist,” Marissa says. “But the adult congenital cardiologist really specializes in how to care for me. Because of this joint program between CHOP and HUP, they understand how to care for the child with congenital heart defects. And that helps them [care] for an adult that has grown up as a single ventricle patient.”

Aging out of pediatric cardiac care and into adult care was a logistical challenge. “Patients like us, we don't just see the cardiologist, we see a bunch of other specialists yearly or every six months,” Marissa says. Whereas before her pediatric cardiologist handled most logistics, once she reached adulthood, responsibility fell on Marissa to coordinate her specialist care. “I know how to advocate for myself,” she says. “But I've always had an interest in bridging that gap between the pediatric and adult population.”

Following her life’s passion

Helping others navigate the road she has walked is a recurring passion for Marissa. Inspired by the care she received as a child, Marissa progressed to nursing school after earning her bachelor’s degree. She also volunteers as a peer mentor and a patient family advisory board member with the Adult Congenital Heart Association.

In a poetic coincidence, Marissa worked as a nursing assistant, then later as a nurse, at the hospital where she had her surgeries — and she worked alongside nurses who had once cared for her as a baby.

Marissa’s history as a patient brings insight to her nursing work. “I understand what it means to be a patient …. I get what it's like to lay in that bed, but you want to be home with your friends, and you feel like a burden towards your family for bringing them into the hospital with you.”

Looking ahead

Marissa recently completed a master’s degree in adult gerontology and now studies in a post-master’s program to be a certified pediatric clinical nurse specialist.

“Because of medical advancements over the past 20 or 30 years, there are now more adults living with CHD than there are children,” Marissa says. “So I think one new opportunity that will be expanding is [the number of] CHD patients that reach their older years.”

Her advice? Let kids follow their hearts.

What does Marissa say to families navigating CHD-related challenges? Don’t limit what your kids can accomplish just because they have a heart condition.

“Of course, the cardiologist may set limitations in different areas, but as long as you're following that guidance, I always recommend that parents let the kids do what they want to do. It's important that they're not held back just because of their heart.”

Following her own advice, Marissa learned how to ski last winter.

“It’s always been a bucket list item of mine to try, but I was never sure if I'd be allowed to because I do have some restrictions with strenuous sports,” she says. “When we realized that it was fine, I just went for it. It was so fun. In winter, I would ski every day if I could.”

Marissa hopes her work makes a lasting impression on the kids who have crossed her path.

“Maybe 20 years from now, a parent and their adult child will look back at their pictures, or think back to memories of being in the hospital,” Marissa says, “and maybe they will remember me as somebody that helped them along in this process, encouraged their child and gave them some hope.”

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