In 24 hours, Bella Jordan’s family says she went from laughing and playing with her three sisters to fighting for her life in the hospital. It was unclear if Bella, who was 2 months old at the time, would even be able to celebrate her first birthday.
“We noticed she was breathing very rapidly one day, so we rushed her to the hospital. They took a picture of her heart, and it was massive. All her organs were taking a hit because her heart was so enlarged,” says Angie Voisard, Bella’s mom.
Imaging showed Bella had dilated cardiomyopathy, which occurs when the heart’s main pumping chamber becomes enlarged. When this happens, tissue thins, causing it to pump with less force. After each beat, more blood remains in the heart – making it increasingly difficult to keep up with the body’s needs. A person can develop the condition at any age, and for Bella’s family, this came as a shock. The news that came next was even more difficult to process.
Doctors discovered Bella had dilated cardiomyopathy, which causes unusual tissue thinning and expansion in the heart’s main pumping chamber. She remained in the hospital until she could receive a heart transplant. (Courtesy: Angie Voisard)
“We were told Bella needed a heart transplant, or she wasn’t going to make it. A few days before all this, we have pictures of Bella playing like any other baby,” says Angie.
Bella was transferred to Cleveland Clinic Children's after her condition was stabilized, and she was placed on the transplant waiting list. On life support with a failing heart, her care team worked around the clock to get her to transplant. To help maintain blood flow, Bella was ultimately placed on a Berlin Heart, which is a mechanical ventricular assist device.
“The Berlin Heart is useful in rehabilitating children like Bella, who are exceedingly ill, haven't been eating and have little or no muscle mass. This device allows us to feed them better and make them stronger for transplant,” says Gerard Boyle, MD, the medical director of Pediatric Heart Failure and Transplant Services at Cleveland Clinic Children’s.
While waiting for a donor heart in the hospital, Angie wanted to make sure Bella was surrounded by family. She visited daily and spent hours at Bella’s bedside, reading books and singing songs – even at times it wasn’t clear if Bella could hear her. When someone from the family couldn’t be by her side, Angie says she knew Bella was in good hands with her care team.
Bella’s family made sure she was surrounded by familiar faces while she was in the hospital, which included frequent visits from her big sisters. (Courtesy: Angie Voisard)
“I could not have wished for a better team for Bella. They did everything for my baby I could ever want,” says Angie. “Along with the doctors, Bella’s nurses were absolutely amazing. Knowing they were there for Bella when I couldn’t be at the hospital meant the world to me.”
Each day Angie saw her daughter in the hospital, she wondered when she’d be able to take her home. But she says they waited patiently because they knew a heart for Bella meant a tragic loss for another family. “We were always cognitive of what that other person’s family would have to go through for our baby to live. When the time was right, a heart would come,” thought Angie. That day came after five months of waiting.
“I remember it was a Monday night, and the Cleveland Browns were about to play. That’s when we got the call. They found a heart, and it was a perfect match. We would be going in the next day for surgery,” says Angie.
Through rehab, Bella began regaining her strength after spending months in the hospital waiting for a heart transplant. (Courtesy: Cleveland Clinic)
In September 2023, pediatric and congenital heart surgeon Hani Najm, MD, performed a successful heart transplant on Bella, who was eight months old at the time. In the days following, she did not experience any heart transplant rejection. However, Bella was behind on developmental milestones since she had spent most of her life in the hospital. After being discharged, she went directly to Cleveland Clinic Children's Hospital for Rehabilitation.
“Here, Bella thrived. She started working on feeding therapy and every time we saw her, she was bigger, stronger and happier,” says Dr. Boyle, who emphasizes it took a multidisciplinary team to care for Bella.
When Bella was finally able to come home after nearly a year, Angie says, “It was like our missing piece was back.” Bella made it home just in time to celebrate her first birthday with a cake and all. Angie says her fun-loving daughter now enjoys being with her family and takes all the snuggles she can get. Although Bella still relies on a feeding tube for now, she’s crawling and standing up on her own.
After several long months, caregivers came together for a clap out to celebrate Bella’s discharge from the hospital. (Courtesy: Cleveland Clinic)
“Bella continues doing therapy and checkups with the doctor, and she’s doing amazing. She’s like a whole different baby since she got her heart,” says Angie.
Dr. Boyle adds, “Bella has a very bright future because of the good heart she received and her supportive family. Her prognosis is excellent.”
Angie stresses her compassion for the donor’s family who experienced a traumatic loss. She and her family say they are forever grateful for Bella receiving the gift of life.
Bella’s sisters, including Claire, are happy to have her back home and enjoy watching Bella make new progress each day. (Courtesy: Cleveland Clinic)
Angie looks forward to watching Bella continue to reach new milestones. She says going through this experience has brought everyone closer together. She encourages others in a similar situation to try to remain hopeful and positive during such a difficult time.
“I know it's hard and every day is a struggle. But if you can somehow learn something from this experience and have a positive thought that God is trying to teach you something through this, it makes a world of difference,” says Angie.
Related Institutes: Heart, Vascular & Thoracic Institute (Miller Family), Cleveland Clinic Children'sPatient Stories
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