In her daughter’s cramped room in intensive care, Amena Khan sits in a chair and rocks little Layla Paul, careful not to disturb the tubes that snake from under a small, pink blouse.
Layla’s father, chin in hands, watches from a cot where Khan sleeps.
It has been more than six months now, and Layla is still here, growing up in Joe DiMaggio Children’s Hospital in Hollywood. This is where Layla dipped her finger into the yellow icing of her first birthday cake in July, and where her family ate Thanksgiving dinner. It might be where they wake Christmas morning.
They pray they will leave before then, but they need a miracle.
“You never know when someone’s parent is going to say, ‘It’s OK to take my child’s heart,’ ” Khan said.
The chubby, wide-eyed toddler has hypoplastic left heart syndrome, a congenital heart defect in which the left ventricle doesn’t develop properly and can’t sustain the body’s circulation. She had a pacemaker put in, and has undergone two open heart surgeries, the first one at 13 days old, intended to rewire her heart so the half that works could support her.
But the heart’s right side couldn’t take the stress.
In May, doctors said she wouldn’t make it to a third and final surgery. They placed her on a heart transplant list behind other sick babies. Since then, as her name has slowly climbed to the top of the list, her parents and the nurses in the Intensive Care Unit have done their best to make this a home for Layla, who can’t walk or crawl.
There are butterflies on lime green walls, stuffed animals in a corner and a balloon that floats over her bed. Her favorite books — What Makes a Rainbow? and Five Little Honeybees — are here. She has wooden blocks and a talking My Little Pony.
Layla has been allowed outside for fresh air just three times since she was admitted in May. Her family takes walks around the ICU with Layla’s IV bag draped over her stroller, keeping her heart medication flowing.
“She’s hanging on,” said Dr. Maryanne Chrisant, the hospital’s medical director of pediatric cardiac transplant, cardiomyopathy and heart failure services. “It’s sort of an artificial life these kids lead when they’re trapped in the hospital like this, waiting. The family is tolerating it the best they can. She’s doing everything she can possibly do to lead a normal life.”
Khan, 29, has been at the hospital from the beginning. The harder decision was quitting her job at a supplement company, which she did in October after her husband, Kevin Paul, 36, a Marine stationed at MacDill Air Force Base in Tampa, told her over the phone that he’d had a dream about Layla.
“She didn’t make it,” he said.
So now, Khan is unemployed and living with her daughter in the hospital while they pay the rent on her apartment that she leased in February. Because she can’t cook, she pays for breakfast, lunch and dinner.
“I do not go home,” said Khan. “And I don’t want to go home until Layla is going with me.”
On the weekends, Paul, a computer technician with the Marine Corps, drives down from Tampa and then back in his Honda Accord so he can spend time with Layla and Khan. He received a transfer from Quantico, Va., to Tampa, but says that’s the closest the Marines can get him to South Florida.
He sleeps in a recliner.
The gas bills add up. But Paul, who says he once got a medical bill for Layla for $1 million, isn’t one to ask for help.
“I don’t do handouts,” he said.
Still, he didn’t refuse when Sonia Perez, the founder of the non-profit Angel’s Pediatric Heart House, nominated Layla’s family for The Miami Herald’s Wish Book. They could use size 5 and 6 diapers, gas cards, and a toddler bed for when Layla comes home. Khan runs to blow off steam, so she could use a jogging stroller for when Layla is allowed outside.
“They’re doing everything they can,” Perez said. “It’s hard.”
Khan has started a Facebook page called Layla’s Miracle Heart to raise awareness about Layla’s condition. And they have made friends with the nurses and grown close to families doing their own waiting, like the Thompsons, who just got their miracle.
On the day 14-year-old Joel left, his new heart pumping in his chest, Layla’s family heard the doctors and nurses clap and cheer. A few minutes later, Junior Thompson poked his head through polka dot curtains to say goodbye.
“We’re praying that next time, you get it,” he says.
They thanked him.
“Please pray for Layla,” Khan wrote on Facebook. “We need a heart sooner than later.”