A joyous birth, followed by heart failure

By Deborah Lynn Blumberg, American Heart Association News

Heart failure survivor and transplant recipient Danecia Williams (left) and her son, Isaiah. (Photo courtesy of Danecia Williams)
Heart transplant recipient Danecia Williams (left) and her son, Isaiah. (Photo courtesy of Danecia Williams)

Although Danecia Williams was 24 and healthy, her first pregnancy took a toll on her body. Her blood pressure spiked, straining her heart and other organs.

Doctors diagnosed her with preeclampsia and closely monitored her and the baby for months. They braced for what might happen when she went into labor. Indeed, her heart rate skyrocketed while the baby's plummeted, prompting an emergency cesarean section.

Williams greeted her new baby boy, Isaiah, as her blood pressure continued to climb. She stayed in the hospital for a week until her numbers stabilized.

She'd been home in Wichita, Kansas, for only two days when she started gasping for air. Her legs swelled. Williams' mother rushed her to the doctor, who said an X-ray showed heart failure.

Williams thought heart failure was a condition for old people, not for a new mom in her 20s.

"Am I about to die?" she thought. "I have this brand new baby. Who is going to care for him?"

Williams went right to the hospital. An echocardiogram showed her heart was functioning at 25% capacity. Doctors determined she had peripartum cardiomyopathy, a rare condition in which the heart muscle weakens during or right after pregnancy.

They told her that people with similar heart function typically have around five years to live. She received an implantable cardioverter defibrillator.

Williams felt depressed and anxious. She couldn't stop worrying. To take her mind off her diagnosis, she became active. She spent time with her son, went out with friends every weekend and became active with her church.

Six years later, she was increasingly tired. It was hard to climb the stairs to her bedroom. She felt sick to her stomach.

A few days after Christmas, Williams was in the kitchen getting cantaloupe for Isaiah. Across the room, her brother watched her drop a piece on the floor, then pick it up and put it in her mouth.

"He knew immediately something was wrong, something wasn't connecting, because that's not normal behavior for me," Williams said.

She could hear but couldn't respond. Her brother called 911. At the hospital, a scan revealed she'd had a stroke. While in the ER, she had another.

Her speech and movement weren't permanently impacted. But her heart was.

With her heart functioning at 10%-15% now, doctors put her on the waiting list for a heart transplant. A year later, her heart function fell further.

"Doctors told my mom, 'We need to do something or she's going to die,'" Williams said. "The hardest part for me was accepting that I might have left this earth and my child."

Doctors implanted a device that performed the workload for the left side of her heart. The left ventricular assist device enabled her to attend a mother-son dance at Isaiah's elementary school.

"It really improved quality of life," she said.

A year later, she was getting ready for bed one night when the phone rang. It was the transplant hospital in Oklahoma City. "They said, 'We have a heart we've accepted on your behalf. Are you interested?"

She had to be there within three hours.

Williams' sister would care for Isaiah. Before going to his aunt's home, Isaiah slipped a framed photo of himself into his mom's bag and said, "You're going to need this."

The 12-hour surgery was a success. Eight years after her health issues began, and after two years on the transplant list, Williams had a new, strong heart.

Danecia Williams recovering after heart surgery. (Photo courtesy of Danecia Williams)
Danecia Williams recovering after heart surgery. (Photo courtesy of Danecia Williams)

She was told her donor was a teenage girl who'd been in a car accident. Williams figured out her identity: 17-year-old Rylee Malone, a high school senior from Texas.

Williams wrote the family to thank them and to tell them that because of their daughter, she would be able to watch Isaiah grow up.

The family wrote back. They continued to exchange letters, then spoke on the phone. In September, on the four-year anniversary of Williams' transplant, they met in Texas.

Bart Malone listened to his daughter's heartbeat in Williams' chest. As he did, Williams said, "It's strong, huh?"

"It's strong, it's so strong," Malone said through tears.

Danecia Williams and her son, Isaiah, met the family of Rylee Malone - the 17-year-old whose heart now beats in Danecia's chest. (Photo courtesy of Danecia Williams)
Danecia Williams and her son, Isaiah, met the family of Rylee Malone, the 17-year-old whose heart now beats in Danecia's chest. (Photo courtesy of Danecia Williams)

The meeting felt like closure for Williams. For Malone, it was comforting.

"My wife has a terminal illness, so hearing from Danecia when we did was one of God's smallest blessings," he said. "She is a beautiful young lady and has a beautiful story. We feel like our daughter's heart is in a good place."

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.

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