Heart transplant

Baby with rare disease receives heart transplant after waiting 218 days

Collin Baker

(CHICAGO) — A baby girl who has been living in a Chicago hospital with her parents for six months waiting for a new heart finally received one last week.

Elodie Carmen Baker received a heart transplant at Lurie Children’s Hospital Heart Center on March 27. Elodie was around 7 weeks old when she was diagnosed with a rare heart condition in August 2021 called dilated cardiomyopathy. She had been on the waiting list for a new heart for over 200 days.

Elodie’s mother, Kate Baker, still remembers the moment she knew something was wrong.

“Our pregnancy was normal and we had an uncomplicated delivery and we actually went home to Elodie,” the first-time mother said in an interview with hello america. “So she was with us in Minnesota at home for seven weeks and one night she wouldn’t feed. I was breastfeeding and she let out this cry and my heart just sank and I said to ( my husband) Collin: “Something is wrong.” We have to welcome it.

In the emergency room, Baker said doctors initially saw nothing in particular.

“I think maybe they were considering sending us home, but they said, ‘Let’s just do an X-ray to be sure,'” she said. “Then the x-ray came back. They saw that her heart had grown and it was August 21st. And we haven’t been back since.

According to the Centers for Disease Control and Prevention, children and adults with dilated cardiomyopathy have an enlarged heart chamber (ventricle), which can prevent the muscle from pumping blood sufficiently throughout the body. There are other types of cardiomyopathy as well as various symptoms of the disease, and some may not even see symptoms appear in their lifetime.

Dr. Anna Joong, medical director of the pediatric ventricular assist device program at Lurie Children’s, has been caring for Elodie for several months.

“In Elodie’s case, the genetic test did not reveal an answer to why she developed this type of cardiomyopathy and in this situation it is called idiopathic dilated cardiomyopathy, which means that at At this point, we don’t really know why it happened to him.” Joong said. GMA.

The doctors would later tell the bakers that their daughter needed a new heart. “The muscle in his is really weak. And so it expanded over time, it wasn’t able to get the blood out, pump it out to the rest of the body and so it expanded, and now his is more like a pancake.” , Baker said.

Two months after the diagnosis, Elodie was airlifted to Lurie Children’s Hospital in Illinois from her home state of Minnesota, where she underwent surgery to have an EXCOR pediatric ventricular assist device fitted. from Berlin.

The VAD essentially acted as a heart for Elodie, pumping blood for her while she waited for a transplant.

“Her heart was so sick that the IV meds just weren’t enough and she needed a VAD,” Joong said. “We’re using this device as a way to connect her to the transplant, so it’s a way to support her heart, to help her get stronger while she waits for her donor heart.”

As Elodie waited for a new heart, she started eating more, with and without a tube. Nora Hammond, a nurse practitioner at Lurie who also cared for Elodie, told CMG, “After the VAD, Elodie was able to tolerate tube feedings in order to provide her with the calories she needed to grow, but was also able to try lots of foods by mouth that she loved!” Lots of lawyers.

Elodie also participated in various therapies to help her grow stronger day by day – from occupational and physical therapy to speech therapy – and along the way she went through many typical milestones for a baby her age.

“She learned to sit. She begins to crawl. She’s starting to stand up…and she’s done all these things on the Berlin, which is really amazing,” her mother said.

Dr. Michael Mongé, Surgical Director of the Heart Failure and Heart Transplant Program at Lurie Children’s, operated on Elodie and noted that Elodie’s care was a huge team effort. “The whole team of physiotherapists, hematologists, cardiologists, critical care doctors, surgeons, have all been involved in his care, which I think has really contributed to the quality of his results since he arrived here in Lurie and after the ‘VAD implant.’

Elodie is recovering from her transplant and is also receiving medication.

“She will continue to use a (feeding) tube after the transplant, but after her recovery she will slowly try to decrease the amount of food through the tube to encourage her to be able to meet caloric needs by mouth,” said said Hammond. CMG.

“The breathing tube was able to come out a few hours after leaving the operating room. His new heart is working great and is really strong,” Joong added. “She is receiving routine immunosuppressive medication to prevent rejection. She has already been transferred out of ICU level care and is sitting. She is a strong child and we are very grateful to the donor’s family.

Joong, Mongé and the Bakers all hope Elodie’s story inspires others to consider organ donation, especially since April is National Gift of Life Month, an initiative of the non-profit organization Donate Life America aimed at raising awareness about organ or tissue donation.

“We have both been donors all our lives. But I never gave it much thought. It’s just a box I checked when I renewed my driver’s license,” Kate Baker said. “Now we spend a lot of time learning about it and trying to use our CaringBridge site to raise awareness.”

“(Elodie’s story) highlights the importance of organ donation and the people who are organ donors. Wait times have increased over time,” added Mongé.

“The number of organs available each year is relatively constant as more and more children continue to be hospitalized and suffer from heart failure. So it’s really important to emphasize the need for people to be organ donors so that people like Elodie can receive a transplant,” Mongé said.

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