Infant receives heart transplant after 218-day wait
After waiting 218 days, 8-month-old Elodie Carmen Baker received a new heart last week.
Elodie, who was diagnosed with a rare heart disease called dilated cardiomyopathy at around 2 months old, spent more than 200 days on the waitlist for a heart. Finally, on March 27, she underwent a successful transplant at The Heart Center at Lurie Children’s Hospital in Chicago.
“The fortitude and the strength that she’s shown in the last seven months constantly amazes us. And we know that she’s destined to do remarkable things,” Elodie’s mom, Kate Baker, told USA TODAY.
“We’re just so proud of her. Just [her] smile and the joy, just unwavering excitement for every single day – really, it’s inspirational,” added Collin Baker, Elodie’s dad. “She has made it just so much easier to keep fighting every day.”
Dr. Anna Joong, one of Elodie’s doctors and the medical director of the pediatric ventricular assist device program at Lurie Children’s, shared that Elodie’s recovery “has been remarkable.”
“She’s made incredible progress. Her new heart works really well; the squeeze is really strong. She’s on all the routine medications that we do – like immunosuppression to prevent rejection. And we’re hoping that she will be able to be discharged from the hospital soon,” Joong told USA TODAY.
The Bakers, who are from Minnesota, first took Elodie to the emergency room in August, where their daughter was later diagnosed with dilated cardiomyopathy. After a seven-week stay at Children’s Minnesota Hospital-minneapolis, Elodie was transferred to Lurie Children’s in Chicago for further care, leading the family to live in the hospital together for almost six months.
According to the American Heart Association, dilated cardiomyopathy causes the heart muscle to dilate and a chamber to enlarge, leading to difficulty when pumping blood and preventing the heart muscle from contracting normally. As the heart becomes weaker, it’s possible for heart failure to occur.
As Elodie waited for a new heart, a Berlin EXCOR pediatric ventricular assist device was surgically placed to help her pump blood.
Joong explained that while some children with dilated cardiomyopathy can see improvement over time, others become sicker and need additional support, like IV medications or a VAD. Older kids can sometimes go home with VADS while they wait for a new heart, but for infants like Elodie, the pump can’t fit inside their bodies.
“She had end-stage heart failure as a result of her dilated cardiomyopathy,” said Joong. “We had exhausted all medical options to take care of her heart, and the only way for Elodie to survive was to get this kind of pump as a way to bridge her to transplant ... to keep her body strong enough in the many months that it took for a donor heart that was a match for Elodie (to) become available.”
Joong also stressed the progress of Elodie’s developmental milestones during her time on the VAD – noting that
she went from being in the “less than fifth percentile” immediately after her VAD surgery to “developmentally normal for an 8-month-old.”
“Despite being on these lifesaving machines,” Joong said, “we know that the stronger you are going into a heart transplant, the better you do afterward. And that was certainly the case for Elodie.”
“She had her first open-heart surgery at 3 months old, which is when the VAD was placed,” added Kate Baker. “But because of her age, she learned to sit, she was starting to crawl, she was starting to crawl to stand and it was amazing that she was able to do all of those things while supported on this device . ... She’s going to go home and be on track with all of her peers, which is super exciting.” Both the Bakers and Joong underlined the importance of organ donation. Unfortunately, Elodie’s time on the waitlist for a heart is not uncommon.
“Especially for our younger children, we sometimes see that wait times can be quite long and can certainly be more than six months,” Joong said. “Right now, there’s over 50 infants [in the U.S.] who are waiting for a heart transplant. It’s really the most incredible gift of life that a family can make in their darkest hours. And when you see a patient like Elodie and how well she is doing after this lifesaving surgery and this lifesaving gift, we are just forever grateful.”
According to the Health Resources and Services Administration’s statistics for total organ donations, 106,129 people are on the national transplant waitlist and over 40,000 transplants were performed in 2021. In the U.S., 17 people die each day waiting for a transplant. But every donor can save eight lives and enhance 75 more.
“There aren’t enough organs available,” said Kate Baker. “We did wait a long time, but that’s not atypical. Many families wait as long as we did, or even longer ... We’re even more grateful for the families who choose to donate because they are saving hundreds of thousands of lives.”
In a Facebook post celebrating April as National Donate Life Month, Lurie Children’s shared that the hospital’s Heart Center has performed more than 400 heart transplants and also urged individuals to learn more about becoming organ donors on Donate Life America’s website.