Stephanie Brown remembers her daughter, Maiyah’s, rapid breathing at birth, her two days in the neonatal ICU, her discharge and return to the hospital three days later with blue lips and even faster breathing, and the diagnosis of an enlarged heart and cardiomyopathy, which can lead to heart failure. Indeed, looking back seven years later, Stephanie remembers these early moments in her daughter’s life like they happened yesterday.
“This was the very beginning, before I knew anything about me,” says Stephanie, of Frederick, Maryland.
The first few weeks of her daughter’s life, Stephanie explains, were both the beginning and foretelling of an unexpected and unique experience she shares with her daughter to this day. She knew Maiyah had a serious and potentially life-threatening heart condition that at some point might require a heart transplant. What she didn’t know was revealed at a cardiology check-up for Maiyah at 18 months old—when doctors wanted to check Stephanie’s heart too.
“I remember lying down and not being able to breathe, like I was suffocating,” says Stephanie. “Maiyah’s doctor came back looking very serious and said, ‘I’m sorry to tell you this but your heart is failing and we need to get you admitted.’ I was in tears, in shock, I could not believe it. The appointment went from Maiyah to me.”
Stephanie’s physician referred her to Johns Hopkins cardiologists who specialize in advanced heart failure and transplant cardiology. They prescribed Stephanie drugs similar to those Maiyah had been receiving and sent her home.
The good news was Maiyah’s heart function had improved. Stephanie’s, however, had declined to 10 percent. Taking care of Maiyah at home, she almost fainted. Two weeks after learning she had cardiomyopathy, she was rushed to the Emergency Department at The Johns Hopkins Hospital. There doctors told her she needed an internal cardiac defibrillator to keep her heart pumping.
“I was scared,” says Stephanie. “The transplant team said my heart was barely squeezing.”
One month after being admitted to the ICU, Johns Hopkins cardiac surgeons gave Stephanie a new heart. She recovered over the next month at home, and has been doing well since then. Under the management of pediatric cardiologist William Ravekes, Maiyah fared well, too, until summer 2016 when she began to struggle walking up stairs.
“That’s when I knew she needed a new heart,” says Stephanie. “I could identify with her symptoms having experienced them myself.”
Like her mom, Maiyah was admitted and evaluated for a heart transplant. Also, like her mom, doctors discharged her with IV medications, and nurses visited each week.
“It was Deja vu all over again,” says Stephanie.
In August, Maiyah couldn’t keep food down, and she would cry and moan in her bed at night. Doctors admitted Maiyah to the pediatric ICU at Johns Hopkins Children’s Center in September, where she remained until receiving a transplant on Nov. 14.
“She was excited about getting a new heart,” says Stephanie. “It meant she could run and play again. It also meant she could eat again, especially her favorite food, a breakfast sandwich.”
Since then, mother and daughter have been partners in care, taking their medications and scheduling their appointments together, getting to know each other’s cardiologists, and supporting each other beyond the typical bond between a mother and daughter.
“I hate to say this but this is our normal,” says Stephanie. “What may seem a nightmare for others in a weird way is a blessing for us. She’s not alone—I know what it feels like, and I’m there for her. That helped her a lot, especially after her transplant because I knew what to expect and what she might feel, and I could tell her ‘Don’t worry, that’s normal.’”
Such awareness among a parent and child sharing a disease can be therapeutic, adds Ravekes. “It’s a huge benefit that mom also went through this because she understands the medicines and what Maiyah is feeling. That helped normalize the experience for Maiyah, so it wasn’t her battle alone. She was well prepared emotionally by her family.”
The way she sees it, Stephanie says, Maiyah got her to the life-saving transplant that allowed her to support her daughter.
“The way everything unfolded, she saved my life,” Stephanie says. “She is my little blessing.”