It Takes a Village to Fix a Heart

Care providers, families and donors all help save lives

Chloe gathered her pencils, markers, crayons and notebooks, eagerly adding each to her new backpack. This year is going to be the best yet—she’s ready to start kindergarten, take on new challenges, make new friends and learn.

Her parents, Renee and Jamil, are excited to put her on the bus for her first day. They know she’ll be okay. She’s where she’s supposed to be.

But five years ago, before Chloe was even born, Renee and Jamil worried. They had never faced anything like the challenge that was in front of them.

A Surprise Diagnosis

“I was at the ultrasound to find out we were having a girl,” Renee says. “That’s when they told me they saw something with her heart. The rhythm wasn’t right, and they referred us to Cincinnati Children’s.”

The concerned parents met with experts in our world-renowned Heart Institute. Ranked among the leading pediatric cardiology programs by U.S. News & World Report, we are an international leader in treating complex heart diseases and defects. Knowing their daughter was in the hands of such respected doctors comforted Renee and Jamil.

After an echocardiogram to watch Chloe’s heart pump, the expectant parents learned that their daughter had a complete heart block. It was devastating news, but doctors reassured them they could help.

Chloe’s heart was developed, but only two chambers were receiving the electric signal to pump blood, meaning her heart wouldn’t function as it should. Doctors explained the best way to help Chloe would be to implant a pacemaker device as soon as she was born.

So Renee and Jamil did all they could to care for the child they’d meet a few months later. Renee saw her own doctor each week and made weekly trips to Cincinnati Children’s to monitor Chloe’s heart and development. Renee and Jamil worked with our experts to develop a care plan to make sure Chloe would arrive safely into the world and grow strong.

But at one of her regular checkups, Renee’s doctor told her that Chloe’s heart rhythm had worsened. To save her, they’d have to deliver her as soon as possible. So Renee prepared herself for Chloe’s arrival—five weeks early. That day, they welcomed their baby girl into their lives. And it seemed just as quickly, Renee was saying “see you soon” as her daughter was transported to Cincinnati Children’s while she stayed in the care of her birthing hospital.

Renee was in close contact with Jamil and Chloe’s care team while she recovered from the delivery. Determined to see her daughter, she was able to leave her birthing hospital 24 hours later for a brief visit.

“I wasn’t able to be there when they took her back for surgery to implant the pacemaker,” Renee says. “But I was able to talk to Jamil. I knew she was going to be okay.”

And Chloe was. She had a successful surgery, and the pacemaker worked exactly as it should. Her family knew then that she was a fighter.

Just three days after her daughter was born, Renee was finally able to hold Chloe in her arms for the first time.

“She was connected to wires and monitors, but it was so good to hold her,” Renee says. “We were so grateful for the way everyone cared for our family.”

A Way to Help More Families

Nancy DeCastro feels the same way as Chloe’s family about the care her niece, Reese, received in our cardiac intensive care unit (CICU).

When Reese was a little over a year old, she began eating less and sleeping more. Normally active and playful, she seemed a bit like a shadow of herself and tired easily. Her parents, Laurie and Todd, were worried, but hoped it was just a phase.

Then, Reese caught a bad stomach bug, and her parents brought her to Cincinnati Children’s. The doctors decided to keep Reese overnight—and the worries about a simple virus quickly gave way to much more serious concerns.

Doctors discovered she had restrictive cardiomyopathy, a rare condition where the walls of the heart become too rigid to expand and pump blood. The only thing that could save Reese’s life would be a heart transplant.

The family who had come to the hospital with simply the clothes on their backs, didn’t leave for 33 days.

Our Pediatric Cardiomyopathy and Advanced Heart Failure team is made up of cardiologists, cardiovascular genetic experts, electrophysiologists, echocardiographers, nurses and social workers. For the more than 700 patients we treat each year, like Reese, these experts provide comprehensive diagnosis, genetic testing, treatment options and care.

“We never had any experience at Cincinnati Children’s before,” Nancy says. “Initially we didn’t think Reese could be that sick, but we are so grateful that Cincinnati Children’s was here to care for her.”

After 18 days on the transplant list as the highest priority, Reese received a heart and a new chance to live a full life with those who love her.

“The way the doctors and nurses cared for her was just amazing. They took care of all of us,” Nancy remembers. “We will always remember how they saved Reese, and the compassion they had for all of us who love her.”

To show her appreciation for the care her family received, Nancy decided to make a very generous gift to name a wing of the new CICU, which will be in our new Critical Care Building.

Nancy’s generosity will help provide care for the kids and families who need our experts most. The support of friends like her allows us to offer the latest in pediatric cardiac care technology, all designed in a way that will help increase efficiency for care providers and support for families.

Investing in Improvement

The team in our Heart Institute cares for kids with the most challenging heart conditions, often those that are too complicated to be treated at other hospitals.

Last year, families from 45 states and 17 countries found hope in our Heart Institute because of our commitment and drive to find the best treatments to care for more kids.

The new Critical Care Building will include the addition of a pediatric hybrid operating room within the Heart Institute, combining radiology and surgical services in one location. This innovative approach saves precious time and reduces the inherent risks of moving critically ill children—helping to ensure patients receive the fastest, safest, most specialized treatments available.

The new patient rooms will also be larger, allowing more space for the latest medical equipment and more privacy for families who often stay in the CICU for weeks—or months—at a time.

As Nancy and her family watch Reese continue to grow and thrive, they want to celebrate all of her successes. She thinks of her gift to Cincinnati Children’s not only as a way to honor Reese, but also as a way to celebrate and support the care other children, like Chloe, receive each day.

And Renee and Jamil feel a sense of relief knowing that more families will see their child’s first day of school, and so many more milestones, because of our Heart Institute.

Renee credits the doctors at Cincinnati Children’s, and supporters like Nancy, for keeping her little girl strong and healthy. When Chloe meets milestones, like her first day of school, Renee thinks about all that her family went through.

“We’re so grateful,” Renee says. “We come back to Cincinnati Children’s twice a year to have her pacemaker checked, but otherwise she has no limitations. We don’t ever want her to feel like she can’t do something because of this,” she says.

“We can’t wait to see what the future holds for her. With the help of Cincinnati Children’s, we know she’ll go so far in life.”

For more information on how you can support the Heart Institute, please contact Lauren Bosse at 513-803-0639 or lauren.bosse@cchmc.org.