Kari Crawford Plant was a “heart kid” long before she started caring for them as a pediatric nurse practitioner.
As a 17-year-old high school cheerleader in Chesapeake, Virginia, Plant underwent open heart surgery to repair a birth defect that made her faint and caused her heart to race. While recovering, she peppered her cardiologist’s nurse with questions about her training.
“Once she told me, that was it,” Plant said. “There was no turning back.”
Plant now taps into her personal experience to bring an extra dose of empathy, compassion, and hope to families of newborns with heart defects and other young cardiac patients at Atrium Health Levine Children’s Hospital in Charlotte, North Carolina.
There, Plant is a liaison to The HEARTest Yard, an organization that connects families of heart kids — children born with heart defects — to agencies that provide them in-home nursing care after they leave the hospital. They include newborns recovering from arduous open-heart surgery at five days old. The HEARTest Yard pays for up to 100 to 300 hours of in-home nursing care, depending on the child’s diagnosis, as well as follow-up physical therapy, speech therapy, and other services — all at no cost to families.
“It’s not my job, it’s my life,” Plant, 53, said of her work with both Levine and The HEARTest Yard. “I was just born to do this.”
Former NFL star Greg Olsen and his wife, Kara, started the Heartest Yard after their son, T.J., had open-heart surgery for a birth defect that caused the left side of his heart to be severely underdeveloped.
Helping kids with heart defects
Since 2013, The HEARTest Yard has highlighted — and helped fill — a critical gap in support that Plant has long seen for heart babies, who can require multiple surgeries and a lifetime of care. The problem: Private insurance companies and Medicaid often won’t pay for in-home nursing care — or for enough of it — either because the family’s policy doesn’t cover it or because the child doesn’t require help with breathing, Plant said.
Still, she said, they are so medically fragile that they need nearly constant monitoring. Already frightened parents must keep tabs on their infant’s oxygen levels, medication, weight, specialty formula, and sometimes a feeding tube — all while changing diapers, often caring for older children, and barely sleeping themselves.
“If you have a toddler running around as well, you could not do it by yourself,” Plant said. “You need help.”
NFL player Greg Olsen and his wife, Kara, discovered the problem when they brought their son, T.J., home as an infant from Levine in 2012 following open heart surgery for a birth defect that caused the left side of his heart to be severely underdeveloped. While the Olsens could pay for an in-home nurse out of pocket, they started The HEARTest Yard to bring that care, along with other philanthropic support, to heart families who can’t.
Having an in-home nurse “paid huge dividends for T.J., his growth, his ability to have someone always be able to feed him — just having that extra set of hands to make sure he got everything that he needed,” Greg Olsen said.
T.J.’s success, he said, made him and Kara think, “What if we provided that service on an outpatient basis ... specifically for very serious congenital heart babies?”
The organization has since provided in-home nursing care and other services to 500,000 children and their families with the help of more than $8.1 million in donations.
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‘I’m so scared’
Haylee Garrett, 27, met Plant at Levine when Garrett’s daughter, Riley, was born with a rare and serious heart defect. Riley’s underdeveloped aorta blocked oxygenated blood from reaching her brain, lungs, and other parts of her body. Her heart also had a hole between the two lower chambers.
After recovering from open-heart surgery at 10 weeks old, Riley could finally leave the hospital. But her home in the mountains of North Carolina is a three-hour drive from Levine, and their local hospital doesn’t have a pediatric cardiac unit.
When it came time to bring Riley home, Garrett recalled, “I can remember just blankly staring one of the [hospital] providers in the face and saying, ‘I'm so scared.’”
The 300 hours of in-home nursing that Riley received through The HEARTest Yard gave Garrett and her husband, Derrick, confidence and peace of mind at a time when even Riley’s crying could have lowered her oxygen level and thrown her heart out of rhythm.
“I watched the nurses” in the hospital, Garrett said. “They had made sure that we knew what to look for. Still, just in your head, you’re like, ‘Am I ready for this? Am I going to miss something?’ That was my biggest fear, that I was going to miss something and not have immediate access to a [nurse] right outside in the hall.”
High costs of care
The HEARTest Yard steps in to help parents manage the severe stress, both emotional and financial, that comes with having a heart baby.
Nearly 1% of children — or about 40,000 — are born with heart defects in the United States each year, according to the Centers for Disease Control and Prevention. About 1 in 4 have a critical abnormality that requires surgery or another procedure in their first year. Heart abnormalities also cause more child deaths worldwide than any other kind of birth defect.
Caring for a child with a complex congenital heart defect costs more than $650,000 on average in their first five years, which typically include complex medical procedures and lengthy hospital stays, and about $2.2 million on average over their lifetime, according to Additional Ventures. The nonprofit supports research into, and better treatment and care for, single ventricle heart disease.
Families typically are left to pay for up to nearly half of that on their own, according to the organization.
At the same time, some parents or caregivers must quit their job or cut back their hours to care for their child.
Garrett said The HEARTest Yard’s in-home nursing allowed her to return to work to help support their family, including after Riley had a second open-heart surgery at 9 months old. (She now receives in-home nursing through North Carolina’s Medicaid program for medically fragile children.)
Riley will need a third surgery in five or so years as her heart grows, along with regular procedures the rest of her life to ensure her heart is working correctly.
But for now, Garrett said, her fiercely independent 1-year-old is busy walking and saying “Mama” and “Dada.” She receives therapy for some developmental delays and is learning sign language to help her communicate. She also adores her big sister, McKinley, and getting to know her new baby brother, Bennett.
“She’s all over the place,” Garrett said.
‘Written in the stars’
When not at the hospital, Plant often volunteers with her husband, Jonathan, at The HEARTest Yard fundraisers. They want to help more children born with heart anomalies survive and live longer, healthier lives while expanding support for their families.
She recently heard from three former patients — one who has started her nursing career and two studying nursing in college.
All have credited Plant as their inspiration, as her own childhood cardiac nurse influenced her.
It’s a reminder, she said, of how heart kids can thrive because of the care they receive in their earliest days. Plant sometimes wonders if her devotion to them was “written in the stars.” In addition to enduring her own heart procedure, she was born two months early — on Valentine’s Day.
“I can't imagine doing anything else,” Plant said. “This is just what I’m supposed to be doing.”
The HEARTest Yard is supported by Stand Together Music, Sports & Entertainment, which unites musicians, athletes, and their teams with proven changemakers to co-create solutions, starting with criminal justice, addiction recovery, education, free speech and peace, and ending the war on drugs.
Learn more about Stand Together’s health care efforts and explore ways you can partner with us.
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