At age 3½, Ali King has endured more medical tests and procedures than some adults do in a lifetime. As her mom says, she is now very “medically aware.”
But despite all the challenges she has endured, Ali still loves life and all that it has to offer. She received the gift of life with a heart transplant, and her mom, Isabella Hageman, says she’s making sure Ali shows her appreciation every day.
“Her donor gave a very selfless gift,” Isabella said, “and we’re going to use it.”
Life-threatening heart problems
Because Isabella has lupus, she was considered high-risk when she became pregnant with Ali. When she was 18 weeks pregnant, doctors found that her baby had a dangerously low heart rate. At 32 weeks, Isabella’s placenta was failing and Ali wasn’t growing, so she had to deliver to try to save Ali’s life. The baby was born weighing 2 pounds, 11 ounces, and she had a pacemaker installed on her second day of life.
Ali was critically ill and received treatment in her hospital’s neonatal intensive care unit for seven weeks, then she went home on oxygen. Remarkably, she was able to be weaned off the oxygen after four months and was relatively healthy for the next two years.
But when Ali was 2½, she suddenly started having trouble eating, sleeping, walking, talking and playing. Isabella took her to seven different doctors near her home in Urbandale, Iowa, but the doctors told her that her daughter just had a virus.
“She was a shell of herself,” Isabella said.
During Ali’s third emergency room visit, doctors finally ordered a blood panel, which showed that her lactic acid was high. She lost consciousness, and doctors determined she was in heart failure. They put her on extracorporeal membrane oxygenation (ECMO), a support system that takes over the function of the heart and lungs when they are unable to supply the heart with oxygen. Over the course of two days, she suffered two strokes, and they finally determined she needed a heart transplant.
"They said, ‘There’s no way she can wake up from this and her heart can go on,’ ” Isabella said.
Because that hospital didn’t perform pediatric heart transplants, the team from the UW Health Pediatric Heart Transplant Program traveled to Iowa to transfer her to Madison. Once she was in Madison, doctors wanted to install a ventricular assist device (VAD) called the Berlin Heart VAD to help her heart pump blood, but she had developed blood clots throughout her body because of the ECMO.
“I asked, ‘Is Ali going to die?’ ” said Isabella. “They couldn’t tell me.”
After a few days all the blood clots were gone, so the doctors at UW Health were able to install the Berlin Heart VAD in Ali’s heart. While Ali stayed at American Family Children’s Hospital, her mom spent the days with her and the nights at the nearby Ronald McDonald House.
“That time of my life was really hard,” Isabella said. “Leaving my baby at a hospital with strangers was never something I thought I would have to do. But I got really close with the entire heart team and a handful of primary nurses. They’re a big reason why I’m sane today. I would leave the hospital and get a coffee, and I fully trusted that Ali was taken care of and in good hands.”
A second chance
On July 31, 2024, Ali received the gift of life with a heart transplant. She stayed in the hospital for a few weeks after that, then moved with her mom to the Ronald McDonald House so she could continue to be monitored at the hospital. Finally, in the fall, Ali and Isabella were able to go home to Iowa.
While Ali still has to be very careful about her health (for the first six months after her transplant, she couldn’t be around anyone without a mask), she has slowly been able to start living like a toddler should.
“I feel like we’ve finally gotten settled,” Isabella said. “She is the sweetest, most loving, most charismatic girl ever. She loves to bake, cook, do art, sing and dance. She just loves life. If you see her at the park, you would not know she had a heart transplant. She’s living her best life.”