Ventricular Assist Device

Patient Stories | Frankie's Heart Transplant

Receiving Her New Heart: Frankie’s Story Update

By Caitlin, Frankie’s mom

On May 20, 2024, Frankie received her Hero Heart—a very special day that felt like a whirlwind. Time stood still, yet everything moved so fast.

She was in surgery for about 10 hours, and shortly after, she was back in the Cardiac Intensive Care Unit (CICU). Her donor heart was well-received, and she was extubated just 5 hours after arriving in the CICU.

The next day, she was already taking her bottles. It was incredible to witness how quickly she bounced back with a properly functioning heart and fully perfused organs. Seeing that firsthand was nothing short of miraculous.

We are profoundly grateful for our donor and their family. In their darkest hour, they found the strength to make the most selfless decision—to say “yes” to organ donation. They gave hope and a second chance to other children, even as they endured the most unimaginable loss—the loss of their child and loved one. Their gift saved Frankie’s life, and we carry their child’s legacy with us every single day.

Since coming home on June 11, 2024, after 224 days in the hospital, life has been amazing. We essentially brought home a “newborn” and helped big sister Vinnie adjust from being the sole focus to sharing attention. Vinnie has stepped up as an incredible big sister, helping with Frankie’s care and being her biggest cheerleader.

Being back home was daunting at first. Frankie had a nasogastric tube and was on 14 medications taken three times daily. Thanks to occupational and speech therapy through Cincinnati Children’s, we focused on improving her eating skills, which led to her NG tube being removed permanently.

Frankie now takes all her nutrition orally. Also, weekly in-home physical therapy has been crucial in supporting her development. With these therapies and their incredible support, Frankie has thrived and caught up much faster than anticipated. Today, now almost 9 months post-transplant, she’s thriving on just four medications a day.

Frankie loves laughing with Sesame Street’s Elmo and watching the movie, Moana. From dancing to music and chasing her big sister around, she brings endless joy to our home. Despite being slightly behind on her physical milestones at 15 months old, Frankie is exceeding all expectations given her long hospital stay and time on the ventricular assist device. Her silly personality and contagious joy light up every day.

Post-transplant care has been intensive but manageable. Initially, we had weekly lab work, echocardiograms, and clinic visits with the transplant team, which felt like a huge milestone since they were no longer the “heart failure team.” Biopsies were monthly for the first three months, and with no signs of rejection, we spaced out visits to every other week, then quarterly biopsies.

Now, nearly nine months post-transplant, we’re on monthly visits. We are incredibly grateful for Cincinnati Children’s and their proximity to our home, which allows for quick access if any issues arise.

There have been setbacks and adjustments, but Frankie’s team has been with us every step of the way. While transplant isn’t a cure, we’re blessed to have a care team that feels like family and wants the best for Frankie just as we do.

(Published February 2025)

Even before she was born, Frankie was very active, recalls her mom, Caitlin. Always kicking and moving around, and frequently having hiccups.

Born on her exact due date in October 2023, Frankie spent one night in the hospital and Caitlin and her husband, James, took her home to meet her 2-year-old sister, Vincenzia (“Vinnie”).  

Frankie was healthy, happy and had a ton of hair. She also had a good appetite and loved food from day one.  

“I had had a great, healthy pregnancy. She was nursing great, at her weight window and sleeping well,” said Caitlin. “We only took her out of the house to go to her first pediatrician’s appointment on that Monday,” where she received a clean bill of health.

But three days later, everything changed. It began when Caitlin had to wake up Frankie for her afternoon feeding. “She was not interested,” Caitlin recalled. “But I chalked it up to her being new and tried again a little bit later. She still wasn’t interested.”

Later, Frankie threw up, and it was at this time Caitlin knew something was wrong. “I knew something was not right. I called the on-call pediatrician, who said if she had a fever, take her straight to the hospital. Otherwise, come in first thing in the morning.”

Frankie did not have a fever, so Caitlin waited until 8 a.m. to call her pediatrician's office.

An Abnormal Heart Rhythm, Transported to Cincinnati Children’s

Right away, the nurse at the pediatrician’s office noticed something was wrong. Frankie’s skin was purplish and mottled looking, she was too lethargic, and she was too cold. When the nurse left the room to find Frankie a hat for added warmth, Caitlin overhead her imploring the pediatrician to come look at Frankie immediately.

“The doctor came in and said, ‘I do not want to scare you, but Frankie is really sick, and she needs to go to the hospital right now. I am going to call an ambulance to come get you two,’” Caitlin said. He called 911, and Caitlin found herself in tears, holding an oxygen mask over her daughter’s face.

As soon as Frankie arrived at the 24-hour emergency department (ED) at Cincinnati Children’s, “30 people ran into the room to start working on her,” Caitlin said, including specialists from cardiology,  pharmacy, and the neonatal intensive care unit (NICU), as well as a chaplain, who helped explain everything while helping to track down James, whom Caitlin had called from the ambulance and was now trying to find the ED.

At first, the team thought something was going on with Frankie’s adrenal glands. But then they performed an echocardiogram, which tests the heart’s function, and an ultrasound of her heart.

Tanya Perry, DO, a cardiac intensivist, was in the ED at the time. 

“[Frankie] was having arrhythmias very consistently, so her heart rhythm was abnormal,” Dr. Perry said. “And when we looked at the ultrasound, we saw that her heart wasn’t squeezing as well as it should.”

A Diagnosis and a Berlin Heart

Frankie was transferred to the cardiac intensive care unit (CICU) with a breathing tube. Dr. Perry and her team then worked to put Frankie on a ventilator. She also needed several medications to help get her heart rhythm under control, and several medications to help her heart squeeze more efficiently. 

The next morning, Frankie underwent surgery to place a temporary pacemaker in her heart to help its rhythm. “While that helped her heart rhythm,” Dr. Perry said, “her heart’s function didn’t recover as well.”

That’s when Frankie’s care team reached a diagnosis. Every test they’d performed had come back negative except one. She’d tested positive for enterovirus—essentially, the common cold.

What the cold meant for Frankie was something called viral myocarditis, which occurs when the cold virus attacks the heart, causing the muscle to become inflamed, swollen and scarred. Viral myocarditis can damage the heart’s ability to work as it should.

When Frankie’s team realized that her heart wasn’t going to recover on its own, they decided to move forward with a ventricular assist device (VAD) called the Berlin Heart®. The device is implanted in less than 150 patients per year in North America, and it is a pump that sits outside the body to help the heart get blood flow to the body’s vital organs. It is used to help babies and children as they’re waiting to either recover their heart’s function or receive a heart transplant. 

Frankie received her VAD on Nov. 22, at around 4 weeks old. On Dec. 2, she was listed for a heart transplant. 

Learning to Thrive while Waiting for a Transplant

Unfortunately, babies on the Berlin Heart can’t leave the hospital because of the monitoring and management it requires. But Frankie was able to leave intensive care in the middle of December, and, since then, she has thrived.

In mid-January, Caitlin started nursing Frankie again and giving her bottles. She also started dressing her in baby outfits, rather than hospital gowns. Frankie’s providers have been the “biggest advocates for helping Frankie be able to do normal baby things,” Caitlin said, adding that Frankie, now 5 months old, is laughing and trying to roll over. 

“Both of Frankie’s parents have been very involved in her care,” Dr. Perry said. “They’ve been phenomenal advocates for her from the beginning, and I think that’s evident in how well Frankie is doing.”

They have also worked hard to normalize the experience for Frankie’s sister and support her through a challenging time, Dr. Perry said. 

For now, Caitlin is waiting for the day her family can all go home together. Until then, Frankie is doing well, eating, growing, and still kicking (and occasionally hiccupping)—doing normal baby things while she waits for a transplant. 

“I’ve been connected with other moms of heart transplant kiddos who are seven years post-transplant, and they said they went home 10 days after the surgery,” she said. “One mom told me that two days after the transplant, her baby was swinging from the crib. It’s just crazy how well they bounce back from the whole thing, and how fast.”

Caitlin’s also hoping to get the word out to others. “I’d never heard of a virus in the heart doing this,” she said. “I never knew this could happen. But now I’m hearing much more about viral myocarditis cases. I want more people to know about it, and I want more people to know they’re not alone if it happens to them.”

(Published April 2024)