Aleena's life is saved by LVAD, heart transplant

Even though she was vomiting frequently, would get dizzy in the shower and experienced swelling in her ankles, she thought maybe she was just getting the flu.

But when she returned to her dad’s house in Sun Prairie, Wisconsin, after a summer with her mom in Milwaukee, her dad took one look at her swollen ankles and brought her to urgent care. The doctors at urgent care sent her straight to the American Family Children’s Hospital emergency room in Madison. “She had been so healthy, it didn’t make sense,” said her dad, Tony. “I didn’t understand how or why this happened.”

“This” turned out to be congestive heart failure due to dilated cardiomyopathy, a heart muscle disease, Aleena’s heart wasn’t pumping the right amount of blood into her body, causing the blood to go into her feet—hence the swelling.

Sonya Kirmani, MD, medical director of the new UW Health Kids Heart Transplant Program, told Aleena and her parents that the only way for her to get well was to receive a heart transplant. But she would still need to wait until a donor heart became available—and no one was sure how long that would take.

In the meantime, Dr. Kirmani recommended that Aleena get a left ventricular assist device (LVAD) implanted in her chest. The device would help pump blood from the lower left heart chamber to the rest of the body. “Her heart failure had probably been going on for a while, and it had affected her lungs,” said Dr. Kirmani. “The LVAD helped us decrease the pressure on her lungs so she would be ready for a transplant.”

Tony was shocked to hear that his daughter’s heart failure had already caused so much damage. “Dr. Kirmani told me if we didn’t act fast, she might not make it,” he said. “Her organs were so damaged, and they would have to heal before a transplant. The LVAD saved her life. Once she got it, she just came back to life.”

After Aleena received the LVAD, she and her dad returned home for a few weeks. Fortunately, it wasn’t long before they received a call that a donor heart had become available, and Aleena received her gift of life on September 27.

While Aleena was just the second child to receive a heart transplant at American Family Children’s Hospital, UW Health has been performing successful adult heart transplants for 50 years, and is home to a nationally acclaimed pediatric cardiology and heart surgery program. The health system spent about two years building its pediatric heart transplant program, said Dr. Kirmani. “We recognized the need for this type of program,” she said. “Every year, we had to refer several children with advanced heart failure to other hospitals so they could get a heart transplant. We wanted to be able to give them the care they needed right here.”

After she received her heart transplant, Aleena’s health improved quickly. She spent just 11 days in the hospital before returning home. “Those people in the hospital were so amazing,” said Tony.

Aleena began attending high school as a freshman in October, taking most of her classes online and coming to the school in person a few hours a day. In January, she was able to return to school full time.

“When I got my heart transplant, I felt like I could finally be back to me, and everything was going to be all right,” said Aleena, who has been enjoying attending basketball games this winter and making new friends.

For his part, Tony is happy to see his daughter enjoying life again after such a scare. “The main thing for me is that she’s safe,” he said. “I’m amazed that this even happened to begin with, and so thankful for this gift.”