Little Heart, Big Miracle: A Toddler’s Journey to Transplant after Awake ECMO Journey

girl eating ice cream in hospital room
little children holding hands
girl posing and smiling at the camera
girl posing and smiling at the camera
girl sitting on hospital stretcher next to gifts
intubated girl in hospital room
girl playing in hospital room
little girl on hospital stretcher with balloons and gifts
little girl smiling at the camera
little girl lying on hospital stretcher intubated
bila making a heart with her hands
family of a man, a woman next to two cars each with two children
little girl sewing next to her stuffed animal with some scars on her face

By: Miranda Torres

By the time Sheli Cataleya Gutierrez blew out the candles on her second birthday cake, she had already faced a grim diagnosis, survived two cardiac arrests, and found herself on the list for a heart transplant. The toddler’s family knew there was only place where their daughter would have a fighting chance: Holtz Children’s Hospital.Sheli was 1 when she arrived at Holtz Children’s emergency room, where she presented with acute respiratory symptoms. During the visit, the pediatric cardiac team performed an echocardiogram, which showed a severely dilated left atrium – a lack of function in one of the four chambers of the heart. In order to figure out the severity of Sheli’s condition, the family was referred to Holtz Children’s outpatient cardiac clinic.

A month later, in January of 2023, Paolo Rusconi, MD, director of pediatric heart failure and transplant at the Miami Transplant Institute, and director of the Holtz Children’s pediatric cardiac intensive care unit, performed another echocardiogram, which led him to diagnose Sheli with restrictive cardiomyopathy – a rare condition that causes the chambers of the heart to stiffen, become enlarged, and fail to relax properly, affecting its overall functionality.

During an evaluation on her second birthday, Sheli’s heart suddenly stopped beating.

“It was heartbreaking, but she was so strong,” said Sheli Galvin, her mother. “We were so scared we were going to lose her, but she overcame.”

With no medication currently in existence to treat the condition long-term, and the potential for liver and kidney failure, Sheli’s diagnosis meant a heart transplant was inevitable. Following her cardiac arrest, the pediatric cardiac care team followed her on an outpatient basis while she waited for a transplant. In January, she came down with rhinovirus and pneumonia, landing her back in the hospital. While admitted, Sheli underwent a second cardiac arrest. It took her care team more than an hour to resuscitate her, and resulted in Sheli being moved up on the heart transplant list.

Once she was resuscitated, Sheli was placed on an extracorporeal membrane oxygenator, or ECMO, which takes over the function of the heart and lungs when the organs can no longer support themselves. Rather than using standard ECMO cannulas, the team used Berlin Heart cannulas, allowing Sheli to remain mobile and alert.

For the first time in Holtz Children’s history, a pediatric patient on ECMO was able to be awake, active, and mouth-fed rather than sedated. This revolutionary technique also made Sheli a better candidate for a heart transplant since she was able to receive physical and occupational therapies, and was given less opioids and sedatives.

Her ECMO team was led by Desiree Machado, MD, director of the ECMO program at Holtz Children’s, Jennifer C. Munoz Pareja, MD, interim section chief for Holtz Children’s pediatric cardiac intensive care unit, as well as the perfusionists team.

After 40 days on ECMO, Sheli’s parents received the call that a heart donor had been found.

“We felt overwhelmed with joy and gratefulness to God for giving our daughter a second chance at life,” Galvin said.

Led by Sandeep Sainathan, MD, a UHealth Jackson Children’s Care pediatric cardiothoracic and congenital cardiac surgeon at Holtz Children’s, and Leonardo Mulinari, MD, Holtz Children’s chief of pediatric cardiac surgery, Sheli underwent her transplant, with the donor heart working immediately.

“She had all of the signs to not have a good outcome, but despite all that, she overcame,” Dr. Sainathan said. “We did a very unique ventricular assist device by using the Berlin Heart cannulas with ECMO, which is one of the reasons she was able to have high quality support, recover well, and get the transplant.”

Now, Sheli has recovered quickly and rang in her third birthday with a new lease on life.

“This little girl is meant for something very big because she’s a little warrior,” said Maylene Gonzalez, surgery coordinator for pediatric cardiac transplant at Holtz Children’s. “The fact that she tolerated ECMO for such a long time and has no lingering major effects to her health is incredible.”