After 218 days of waiting, 8-month-old Elodie Carmen Baker has a new heart.
Elodie was diagnosed with a rare heart condition when she was only around 2 months old. After a long wait for a matching donor organ to become available, she underwent a successful heart transplant on March 27 at Lurie Children’s Hospital Heart Center.
“The courage and strength she has shown over the past seven months constantly amazes us,” said Elodie’s mother, Kate Baker. “And we know she is destined to do remarkable things.”
“We are so proud of her,” said Collin Baker, the baby’s father. “Only [her] the smile and the joy, just an unwavering excitement for each day – really, it’s inspiring.
Dr. Anna Joong, one of Elodie’s physicians and medical director of the pediatric ventricular assist device program at Lurie, said Elodie’s recovery “has been remarkable.
“She’s made incredible progress,” Joong said. “His new heart is working very well. The pressure is really strong. She takes all the routine medications we take, like immunosuppression to prevent rejection.
She did so well that she was discharged from hospital on Wednesday, just 10 days after receiving her new heart.
The Bakers, who are from Minnesota, first took Elodie last August to a hospital in Minneapolis where she was later diagnosed with dilated cardiomyopathy.
After a seven-week stay at Children’s Minnesota Hospital-Minneapolis, she was transferred to Lurie and the family lived in the hospital for nearly six months.
According to the American Heart Association, dilated cardiomyopathy causes difficulty in pumping blood and the heart muscle does not contract normally. When the heart weakens, heart failure can result.
While the Bakers were waiting for a new heart for Elodie, she underwent surgery to provide her with the temporary help of what is called a Berlin EXCOR Pediatric Ventricular Assist Device.
Some children with dilated cardiomyopathy see improvement over time. Others get sicker and need extra support, like intravenous medication or a device like the one Elodie received, Joong said. Older children sometimes go home with ventricular assist devices while waiting for a new heart. For infants, however, the pump cannot fit inside their small body.
“She had end-stage heart failure as a result of her dilated cardiomyopathy,” Joong said. “We had exhausted all medical options to take care of her heart, and the only way for Elodie to survive was to get this type of pump to prepare her for the transplant…to keep her body strong enough for many months. Which he mistook for a donor heart that matched Elodie [to] become available.”
The temporary assistance allowed Elodie to go through normal stages of development. Joong said the baby was “less than the fifth percentile” in terms of normal development for an infant right after his ventricular assist device had surgery, but was “developmentally normal for a 8 month old child.
“Despite being on these life-saving machines,” Joong said, “we know that the more you go into heart transplant, the better off you are afterwards. And that was certainly the case for Elodie. .
Kate Baker said her baby girl “had her first open-heart surgery when she was 3 months old, when the VAD was placed.”
Still, she said Elodie “learned to sit up, she started to crawl, she started to crawl to stand, and it was amazing that she was able to do all of these things while being supported by this device.”
Elodie’s long wait for a heart is not unusual.
Especially for young children, the waits “can definitely exceed six months,” Joong said. “Right now, there are more than 50 infants [nationally] waiting for a heart transplant.
“It really is the most incredible gift of life a family can give in their darkest hours. And when you see a patient like Elodie and how well she is after that life-saving surgery and that life-saving gift, we are forever grateful.
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