Baby With Rare Disease Finally Gets Heart Transplant After 218 Days Of Waiting

Mason Joseph Zimmer
baby with breathing tube and red bow smiling
Facebook | Lurie Children's Heart Center

It's hard to imagine a more nerve-wracking and exhausting feeling than waiting for a life-saving organ transplant, but that wait is a pretty common experience. After all, there are only so many donors out there, and even fewer that will necessarily serve as a match to us.

If that wasn't bad enough, it's also true that we'll never be able to predict who will need a transplant as they can happen as the result of a serious and sudden infection. And even taking that possibility aside, we can't exactly predict or control who's going to be born with a rare condition.

As we'll soon see, this reality can create unfortunate situations in which children fight for their lives before they've even had a chance to experience it. But thanks to some quick and diligent intervention, the day will likely come when one child won't even remember what that felt like.

About seven weeks after she was born, Elodie Carmen Baker of Minnesota found herself back in the hospital.

baby with breathing tube swaddled in hospital bed
Facebook | We Heart Elodie

As her mother Kate told Good Morning America, it was clear that something was wrong with the baby when she suddenly stopped feeding one night and let out a cry.

But when Baker's family sought medical attention, doctors didn't notice what was wrong with her at first and almost missed a life-changing problem.

In Kate's words, "I think they were considering maybe sending us home but they said, 'Let's just get an X-ray to be sure.'"

When that X-ray came back, they discovered that one of Baker's ventricles was enlarged.

hospital staff in Santa outfits next to baby with breathing tube and red bow
Facebook | We Heart Elodie

According to the CDC, this is called dilated cardiomyopathy and it meant that Baker's heart had a severely diminished ability to pump blood throughout her body.

As Kate put it, "And so it's expanded over time, it hasn't been able to push the blood out, pump it out to the rest of the body and so it's dilated, and now hers looks more like a pancake."

As a result, she was flown to Lurie Children's Hospital in Chicago and was fitted with a heart substitute called a Berlin EXCOR pediatric ventricular assist device.

baby with breathing tube and red bow smiling next to name board
Facebook | Lurie Children's Heart Center

According to Dr. Anna Joong — who cared for Baker during the months she spent in the hospital — this device was necessary because her heart was too far gone for IV medicines to have any effect and served as a lifeline until a donor heart could be secured.

And while she continues to have a feeding tube, she's also been able to try eating foods like it isn't there and was able to learn to sit and crawl with her device attached.

But by March 27, Baker's 218-day wait was finally over and she'd undergo surgery a second time for a heart transplant.

baby with breathing tube and feeding tube sits with family
Facebook | Lurie Children's Heart Center

And while she's regularly taking immunosuppression medications to keep her body from rejecting the heart, it only took hours for it to show some encouraging implications for Baker's condition.

Joong said that the breathing tube we've seen Baker use in each photo was able to come out before the day was over and the same should be eventually be true of her feeding tube as well.

In Joong's words, "She is one strong kid and we are so grateful to the donor family."

h/t: Good Morning America