Evelyn's Story

Meet Evelyn

Close up of a small infant with medical tubes coming out of her nose and mouth. She has a medical monitor on her forehead beside a blue bow. She’s covered in soft blankets. — Evelyn was diagnosed with a critical heart condition prenatally. After she was born, her care team determined she needed a heart transplant.

Hannah spent her 27th birthday — and her daughter, Evelyn’s 6-month birthday — at Children’s Mercy, waiting. And waiting. And waiting.

Evelyn was in the operating room getting a new heart. Hannah was with her husband, Trey, passing the 12-hour surgery time by sanitizing Evelyn’s toys and moving them to her post-op room. Late at night, they got word the surgery was successful: They could sneak in a birthday visit before the day was over. “We had this tradition of her wearing pigtails into the OR,” Hannah said. “She was lying there peacefully with her little pigtails intact!” It was the best birthday gift they could have imagined.

Waiting for the unknowns

Almost three years later, Hannah says the time spent waiting (for a diagnosis, an evaluation, a donor, the surgery) seems short on the other side. But while they were in it, the seconds seemed to stretch for years.

Their long wait began during Hannah’s pregnancy, when Evelyn’s 20-week anatomy scan showed she had some potential heart issues. Hannah’s local care team transferred her to the Elizabeth J. Ferrell Fetal Health Center (FHC) at Children’s Mercy, where she was diagnosed prenatally with critical aortic stenosis, a narrowing of the aorta that restricts blood flow. Hannah had been born with a mild version, herself.

A mother holds a small baby in a hospital room while the father sits to the side with his arm around them. The baby is cradled on pillows and has medical tubing coming from her tiny body. — Evelyn’s parents, Hannah and Trey, drove 2.5 hours to our Fetal Health Center every week before Evelyn was born. Afterward, Hannah moved into the Ronald McDonald House to be near her, while Trey drove to the hospital every weekend.

They drove two and a half hours from La Plata, Mo., to the FHC every week for monitoring. They could anticipate potential courses of action, but they wouldn’t know exactly what Evelyn needed until she was born.

“Physiology changes so much from fetal to postnatal life, that you really don’t know how things are going to look,” said Brian Birnbaum, MD, FACC, FAAP, Interim Division Chief, Cardiology.

The Ward Family Heart Center team knew they’d need to assess quickly at birth and collaborate with their interventional cardiologist colleagues and the Brendan Tripp Elam Transplant Center to carve a path forward for their tiny new patient.

In May 2023, Evelyn was born at 39 weeks by C-section in the FHC and immediately had an urgent atrial septostomy in the Cardiac Catheterization Lab to boost her heart’s blood flow. They were also able to understand her challenges better.

“Evelyn had critical aortic stenosis and severe left ventricular dysfunction,” said William Gibson, DO, Cardiothoracic Surgeon, Heart Center and Transplant Center.

Her aortic valve was very small, and her left ventricle had become scarred while straining to pump blood through the constricted opening. In some cases, surgeons can alter the heart so the right ventricle does the work of both chambers. But Evelyn’s right ventricle was also affected by the severity of her disease.

“We had to shift directions and go down the transplant pathway,” said Dr. Gibson.

Waiting for the right heart

An infant in a mobile hospital cot has been wheeled outdoors into a courtyard. She stares up at the plants in the raised garden bed by her. Her blankets are purple and blue, and there are two stands with all of her IV bags and medical equipment behind her. On the right side of the picture, we can see the lower half of a nurse’s body in navy blue scrubs and white gloves, but her face is out of frame. — by Evelyn got to enjoy some garden time during her long stay in the CICU.

At 5 days old, Evelyn had a medical hybrid surgery that would give her the best chance of staying strong until a heart could be found. The operation put the right ventricle in charge of pumping blood, restricted the blood vessels that go to her lungs with pulmonary artery bands and placed a stent across her atrial septum. It was a scary day: She had complications during the procedure and had to have CPR, but she pulled through.

Evelyn is one of the youngest patients Children’s Mercy has ever evaluated for transplant: She was listed at only 10 days old at 1A status, the highest priority. She would stay in the Cardiac Intensive Care Unit (CICU) where the team could support her as she waited for a new heart.

“We were very grateful for everything,” said Hannah. “The staff in the CICU really treat each kid like their own, which is comforting.”

Many children with Evelyn’s issues benefit from a ventricular assist device (VAD), or artificial pump, pre-heart transplant. Fortunately, Evelyn didn’t need a VAD. Instead, her team used IV medicines to help her original heart function as well as it could.

“When these kids are growing up in the hospital while waiting for a transplant, we try to maintain their development as much as possible,” said Jill Van Stright, CCLS, CTRS, Child Life Specialist II, Transplant Center. “I think it was really beneficial that she was able to be medically managed because [she could] have as close to 6 months of childhood as you can within an ICU.”

The goal: Go into transplant day as healthy and active as possible, all the while never knowing if and when that day would arrive.

“It’s incredibly unknown,” said Dr. Gibson. “We have to find [a heart] that is healthy and strong enough to support her, but it has to be the right size, and it has to be her turn.”

Hannah took time off from her job as a special education teacher and moved into the Ronald McDonald House. Trey drove to Kansas City every weekend. “It was a privilege: I got to stay with her and be really involved in all her therapies and rounds,” said Hannah.

An infant in a hospital room is held up by the hands of someone out of frame. She is petting a facility dog lying on the floor next to her. The dog has a red collar that reads “Litta,” a pink nylon lead and a green therapy dog vest. The baby is wearing a pink shirt and has tubes leading away from her body to equipment behind her. — Evelyn loved spending time with Litta and her human, Jill Van Stright, a child life specialist, during her time at Children’s Mercy.

Waiting to recover

After six more months of waiting, it was time for that extraordinary birthday gift. The call came in, a heart was ready, and they went to the OR. "[The transplant] went as unremarkably as we could have hoped,” said Dr. Gibson. “We had to take extra donor aorta to replace her small aortic arch, and that made the operation a little more complex, but it went well.”

“I didn’t realize how pale and dusty blue she had been,” said Hannah. “After transplant, she was bright pink — in a good way!”

Evelyn had a few complications after her transplant — including a respiratory virus, needing a hepatic vein stent, temporary vocal cord paralysis and arrythmia — but nothing held her back for long.

With her new heart, Evelyn began to have more energy for playing, and she slowly gained stamina. By the holidays, Evelyn moved out of intensive care to a regular medical/surgical unit. And then, finally, the waiting was over. They were discharged to stay at the Ronald McDonald House so they could attend all their follow-up appointments easily.

Living with a new heart

A toddler with blonde hair and a big smile stands on a green couch under a big sign that says “Happy Heart Month, Evelyn! Heart Transplant November 17th.” She’s wearing a blue shirt, and she has tape and a cotton ball on one inner arm, as if she just had blood drawn. — Evelyn celebrates her transplant birthday every November. It’s been two years since this resilient kid got her new heart.

“Normally, with how far away we live, we would have had to stay for three months,” Hannah explained. “But she was doing so well, we only had to stay a month.” By early February 2024, they were back at home, learning to live life with a new baby who had an even newer heart.

They traveled back to Kansas City for follow-ups every two weeks, then every month as their need for appointments tapered.

Evelyn’s current care schedule is a little less demanding. “She gets labs every month, and then she has a clinic visit every three months,” said Kay-Leigh Lawrence, MSN, RN, CPN, CCTC, Nurse Coordinator, Advanced Cardiac Therapies and Transplantation. "And right now, she’s been getting a cardiac cath every year.”

Evelyn takes two immunosuppressants and an arrhythmia medication. She only uses her G-tube for those medications now and is able to enjoy eating and drinking her favorite treats. She's doing speech, physical and occupational therapy to catch up after spending so much of her first year in a hospital bed. “We’re just trying to give her all the normal kid and family experiences, now that she’s not as critical,” said Hannah.

“She’s a sweet little thing, and she’s developing so well,” said Kay-Leigh. “I think she’s doing just awesome!”

The almost 3-year-old loves to color and play outside. “She’s loud, she’s sassy, she’s opinionated in all the best ways,” said Hannah. “She also loves other people, which I wasn’t sure she would after coming out of the hospital!”

Evelyn will start preschool in the fall, but first she has a new role to step into: Big sister. She’ll be joined by a little brother in May.

Hannah encourages other families waiting for a transplant to hang in there. “The call comes right when you least expect it,” she said. “The wait is worth it, and it gets easier after transplant.”