Waiting for a heart

Imani Harvey was laughing and playing with her kindergarten friends at school March 5. By that afternoon, the 5-year-old bundle of energy with the mischievous grin had passed out and was rushed to the hospital with what doctors say is a failing heart.

The Lake Whitney Elementary School rising first-grader is currently on life support, where she will remain until a donor heart is located, her mother, Jackie McGriff, said.

The family lives in Orlando, but McGriff has been staying in Gainesville since Imani was transported to UF Health Shands Hospital. Amari Harvey, Imani’s twin brother, is staying with a family member in Orlando until his mother and sister return.

McGriff said her daughter has a lot of spunk and a lot of fight in her — but she’s getting tired.

“The doctors warned me this is going to be a long road,” McGriff said, “We would be here anywhere from two months to a year. Imani’s heart is very weak.”

The concerned mother started a GoFundMe page in case anyone would like to make a monetary donation toward the family’s expenses. McGriff is a single mother who was working at Publix but had to quit because she was missing too much work to be with Imani in the hospital. Her daughter needs her, she said.

SYMPTOMS FOR MONTHS

Imani’s symptoms actually started last September, when the little girl passed out and was taken to the emergency room.

“They were thinking that it was more with her brain or neurology or she was having a seizure,” McGriff said.

About six weeks later, Imani passed out again; doctors ran tests on her brain but didn’t check her heart, McGriff said.

“They could never find any issues,” she said. “They kept us there three days the second time. I left with no diagnosis. I left with no instructions. I left clueless. I didn’t know what I was going to do.”

She said Imani had been active before when she passed out — once after jumping on a trampoline and again after playing in a bounce house. McGriff kept her daughter away from those activities, hoping that would eliminate the source of the problem.

Imani had about four healthy months — until that March afternoon. But this incident was different. After passing out the previous times, she woke up and felt fine. This time, she had a seizure on the way to the hospital and again after being transported. And then her blood pressure dropped.

Doctors put Imani on a ventilator, and that’s when they discovered her heart was the problem. It was operating at about 55%, McGriff said. Twelve hours later, her heart function had dropped to almost 35%.

A DIAGNOSIS

Then McGriff received the devastating news: Imani has cardiomyopathy. That coupled with the discovery of a too-narrow artery wall, was a death sentence for the little girl. She has been on life support since March 8 and on the transplant list since March 22.

Since March, Imani’s health chart has expanded almost weekly. She has had a blood clot removed from her brain, McGriff said, and she has had a stroke and three open-heart surgeries. Imani was placed on a machine that acted like an artificial heart and provided a single pump on the left side of her heart.

“They did the surgery, they expanded the artery wall, but they were uncertain if her heart was going to be able to withstand getting the surgery and being able to still function on her own,” McGriff said. “Her heart had been fighting, so her heart was really week.”

For the next three weeks, Imani experienced bad drainage in her chest, so tubes were frequently placed to drain out the fluid that was collecting behind her heart.

“Her emotion state started declining,” McGriff said. “Every two days they were either putting in a chest tube or taking one out, and it’s painful. After that, they were telling me — I remember the day, it was a Friday. They said her heart is looking good. The original plan is her heart would get better on its own. … They said her heart looked good and (they were) setting her up for trials and turning the machine down and letting her own heart work and they were deciding when they were taking her off the machine.”

By Sunday, McGriff said, the right side of Imani’s heart stopped.

“It was one of the worst things ever to watch,” she said. “They had hit her with the defibrillator four or five times, and they’d do CPR. And she’d come back and then flatline.”

After the second surgery, she battled with the chest tube again. About three weeks ago, so much blood had collected behind Imani’s heart that it backed up into her lungs, McGriff said. Her chest had to be cut open again to remove the massive amount of blood. McGriff was grateful to hear the blood is no longer accumulating.

SEARCH FOR A HEART

“But she is doing good now,” McGriff said. “She got off the (ventilator) about a week ago.”

While Imani and her mother await a donor heart, doctors are focusing on rehabilitating her right side, which was weakened by the stroke.

She takes part in physical and occupational therapy daily. Last week, a cast was put on her right foot to realign it. They are working on her speech, too, in hopes of getting her back to the level she was before the stroke.

Even though she is tired of being in the hospital and being poked and operated on, Imani has a good attitude, her mother said. But she would like to be home, playing on the iPad with her brother, dancing, seeing her friends, eating way too much pizza and watching her favorite superhero show, “PJ Masks.”

Because children aren’t allowed in the hospital’s pediatric wing, Imani and Amari haven’t been able to see each other, so they rely on daily Facetime sessions. McGriff drives to Orlando once a week to spend time with her son, and she said it breaks his heart — and hers — when it’s time for her to head back to Gainesville.

This is the way it must be until Imani gets a new heart — which could take up to a year, McGriff said.

“And then it’s going to be a whole completely different lifestyle for her and for us,” she said. “But I’m just thankful to have her still. I can’t have me outlive her. She has to outlive me.

“She’s such a sweetheart. She’s one of the most loving little girls ever. … The girl is a real joy to be around,” she said. “She definitely will change your mood if you’re ever in a bad mood.”

McGriff has a birthday in a few weeks, and she has one prayer: “Please let her get a heart for my birthday.”

If that prayer is answered, she has another one.

“Her birthday is July 22, and I would really love for her to be home by her 6th birthday.”