Baby girl with rare condition gets heart transplant after waiting 218 days, six months in hospital

A baby girl who waited 218 days for a heart transplant, including the last six months in a Chicago hospital, finally received her new heart last month.

According to Good Morning America, Elodie Carmen Baker received her long-awaited heart transplant on March 27, at The Heart Center at Lurie Children’s Hospital.

Sadly, Elodie was just seven weeks old in August of 2021 when she was diagnosed with a rare and complicated heart condition called dilated cardiomyopathy.

It became apparent to medical experts that the only way to remedy the situation was to get her a new heart, something Elodie was forced to wait more than 200 days for.

“Our pregnancy was normal and we had an uncomplicated delivery and actually went home with Elodie,” the baby girl’s mom, Kate Baker, told Good Morning America.

“So she was with us in Minnesota at home for seven weeks and one night, she wouldn’t feed. I was nursing and she let out this cry and my heart just sank and I said to (my husband) Collin, ‘Something’s wrong. We need to take her in.'”

Baker recalled that doctors at the ER didn’t initially find anything to signal there was something wrong.

“I think they were considering maybe sending us home but they said, ‘Let’s just get an X-ray to be sure,'” Kate explained.

“Then the X-ray came back. They saw her heart was enlarged and that was on Aug. 21. And we haven’t been home since.”

As per the Centers for Disease Control and Prevention, dilated cardiomyopathy causes children and adult sufferers to have an enlarged heart chamber, which has the potential to leave the muscle unable to pump the necessary blood through the body.

“In Elodie’s case, the genetic test did not reveal an answer for why she developed this kind of cardiomyopathy and in that situation, it’s called idiopathic dilated cardiomyopathy, meaning at this point in time, we don’t really know why this happened to her,” Dr. Anna Joong, who has been caring for Elodie for the last few months, told Good Morning America.

According to mom Kate, Elodie’s heart muscle was really weak.

“It’s expanded over time,” she said. “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.”

Two months after her diagnosis, Elodie was flown to Lurie Children’s Hospital in Illinois. There, she underwent surgery to have a pediatric ventricular assist device (VAD) placed, which essentially did the job of a heart for her, pumping blood around her body until the right transplant could be found.

“Her heart was so sick, that the IV medicines just weren’t enough and she needed a VAD,” Dr. Joong said.

“We use this device as a way to bridge her to transplant so it’s a way to support her heart, to help get her stronger in the time that she’s waiting for her donor heart.”

Fortunately, on March 27, having waited two years for a new heart, Elodie underwent a successful transplant.

“She will continue to use a (feeding) tube after transplant but after she recovers, will slowly try to decrease the amount of food through the tube to encourage her to be able to meet caloric needs by mouth,” Nora Hammond, a nurse practitioner at Lurie’s, explained to Good Morning America.

“The breathing tube was able to come out within hours of coming out of the operating room. Her new heart works beautifully and is really strong,” Dr. Joong continued.

“She is getting routine immunosuppression medications to prevent rejection. She has already been transferred out of ICU level care and is sitting up. She is one strong kid and we are so grateful to the donor family.”

I’m just so made up for Elodie and her family – way to go little one, keep fighting!

Please, share this article if you, too, want to send your congratulations and love in the direction of this brave little girl.

 

Read more about...