For every provider at Atrium Health Levine Children’s, caring for pediatric patients is personal. But for six nurse practitioners, treating patients with congenital heart defects hits incredibly close to home. These advanced practice providers have either experienced a congenital defect themselves or have a child with one. Read on to learn about their inspiring stories of hope, strength and compassion.
Born with a Purpose to Help Others
Jillian Reed, NP, a pediatric cardiac critical care nurse practitioner at Levine Children’s, was diagnosed several hours after birth with a ventricular septal defect (VSD) and bicuspid aortic valve. Reed spent her childhood active and healthy, with close monitoring of her heart at annual cardiology appointments. However, during her senior year of high school, her echocardiogram indicated she needed surgery.
The week after her high school graduation, Reed underwent surgery to close her VSD, with a patch to preserve her aortic function.
Years later, Reed continues her care with her colleague, Dr. Matthew Schwartz, and has pursued a career that allows her to help patients like herself.
“I’m a nurse practitioner in the pediatric cardiovascular intensive care unit (CVICU) today because of the amazing team who cared for me during my childhood,” she says. “I wanted the opportunity to pay it forward to all the patients and families who would walk both similar roads to mine and many that would prove to be far more complex and challenging.”
Adopting a Baby with a Congenital Heart Defect
Erika Wintering, NP, chief advanced practice provider for the cardiac program at Levine Children’s, developed her love of caring for patients with congenital heart defects early in her career as a CVICU bedside nurse. In 2023, her 23rd year of caring for pediatric cardiology patients, Wintering learned of a patient who needed a home.
“This beautiful little girl was given up for adoption the day she was born and her biological mother knew in her heart she couldn’t care for all her needs,” says Wintering.
Wintering went home and talked with her husband about the possibility of adoption. Already parents to eight biological children, the couple was open to expanding their family. They contacted the social worker and told them they’d love to give the child a family. To their extreme delight, the family was granted guardianship from the adoption agency, though the girl still needed continued care in the hospital. She came home with the Winterings after a three-and-a-half-month hospital stay.
“She went through a lot: Her first open heart surgery, feeding issues and many other challenges,” says Wintering. “The cardiac team is like family and we were so supported that I knew we could handle this.”
As the family awaits the child’s next open heart surgery in early 2024, they are grateful for what a blessing she’s been in their lives.
“We knew what this undertaking might mean to our family unit, but in the end, we knew we could take this on,” says Wintering. “I have an amazing husband who has sacrificed a lot to allow me to work in a field that I love, and that understood adopting a child with a congenital heart defect would be the ultimate gift in my career.”
Wintering says parenting a child with a congenital heart defect has given her a new level of empathy for her patients and their families.
“As a mom, I can now completely relate to parents who are wondering what to expect,” she says. “Handling this firsthand has [been] a humbling experience — it clearly takes a village to care for your child. Our team is this village and we all somehow help these families get through it one surgery at a time.”
Nurse Practitioner’s Newborn Son Undergoes Surgery for Congenital Heart Defect
Katie Boeggeman, NP, a pediatric cardiac nurse practitioner at Levine Children’s, has worked in the CVICU since 2014.
“I think for anyone who works in healthcare, especially with congenital heart patients, one of your greatest fears when you become a parent is that you'll find yourself on the ‘other side’ of the bed,” she shares.
When Boeggeman’s second child, Mason, was born in 2018, an echocardiogram at birth diagnosed him with partial anomalous pulmonary venous return (PAPVR).
“This is typically not a diagnosis that impacts the function of the heart until later in life, but being a hypervigilant cardiac nurse practitioner mom, I elected to have a follow-up appointment with cardiology when he was 10 weeks old,” she says.
At that appointment, an echocardiogram revealed that Mason had also developed a critical coarctation of the aorta, a severe narrowing of the vessel that carries oxygenated blood out to the body. The left side of his heart was very enlarged and needed to be corrected quickly.
“We were admitted to Levine Children’s that evening and he went into surgery the following day for a coarctation repair by Dr. [Paul] Kirshbom,” says Boeggeman. “We spent four days in the CVICU, as my work family cared for my child. It was a surreal experience, to say the least.”
Boeggeman says people ask if she was terrified while her son was in the hospital. While part of her knew everything that could go wrong, her trust in her work family far outweighed her fears.
“I can honestly answer that I fully trusted everyone on our team to care for my baby because I knew the level of expertise and care they provide for children across the region,” she says. “There was a true sense of peace when I handed him over to the OR team.”
Mason is now an energetic, hilarious kindergartener who is about to turn 6. He sees his cardiologist, Dr. Gonzalo Wallis, every year for checkups and monitoring of his original PAPVR diagnosis.
“Everything we went through with Mason has made me a better, even more compassionate provider,” says Boeggeman. “I'm able to connect with families in a different way and reassure them that I know firsthand they are getting the best care possible.”
Nurse Practitioner’s 8-Year-Old Son Is Thriving After Congenital Heart Defect Diagnosis
Soon after Page Steadman, NP, a pediatric cardiology and critical care medicine nurse practitioner at Levine Children’s HEARTest Yard Congenital Heart Center, gave birth to her son Eliot in 2016, the infant was diagnosed with tetralogy of Fallot. The condition is a combination of four heart defects. Eliot underwent a successful heart surgery soon after he was born.
After the family moved to Charlotte from Chicago in 2019, Page joined the team at Levine Children’s, where she now cares for heart failure and heart transplant patients and works as needed in the CVICU.
“Eliot is now 8 and is thriving,” she says. “He sees Dr. Aaron Prosnitz and we have been thrilled with his care here. Leaving our cardiologist and heart team in Chicago was difficult, but we feel so blessed to have such an amazing team here.”
The family is also involved in Camp LUCK, a camp for kids with congenital heart differences.
“It has been an amazing experience for Eliot and our entire family,” says Steadman. “Seeing my patients, who were so sick while in the hospital, rock climbing, swimming, and thriving is wonderful.”
She says her experience has changed her perspective as a cardiology advanced practice provider.
“Being a mom of a child with a congenital heart difference has made me a better APP and advocate for my patients and families,” says Steadman. “My patients and families have made me a better mom and advocate for my son. It truly is full circle.”
A Valentine’s Day Birthday and Congenital Heart Defect Diagnosis
Kari Plant, NP, a pediatric cardiology nurse practitioner at Levine Children’s HEARTest Yard Congenital Heart Center, was born about seven weeks early on Valentine’s Day, along with her identical twin.
“Little did we know that the Valentine’s Day birthday was foreshadowing for us both,” says Plant. “In our early teen years, we were diagnosed with what I now know is a pretty common arrhythmia and began seeing a cardiologist.”
Three weeks before her senior year of high school, Plant underwent cardiac surgery to remove the extra tissue in her heart that caused the arrhythmia. Today, the procedure is done in the cardiac catheterization lab, not the operating room.
“My surgery required a five-day hospital stay, but now kids and teens can go home the next morning after leaving the electrophysiology lab,” she says. “This is proof that research and technology make a difference.”
That hospital stay was the turning point where Plant decided to become a nurse, later continuing her education and becoming a pediatric nurse practitioner. She’s now worked in pediatric cardiology for 24 years.
“I consider it a blessing to have a patient and provider perspective,” she says. “I can't imagine doing anything else and I'm thankful every day for that fateful turning point that has allowed me to have my dream job.”
She adds, “I certainly think our past shapes our future in ways we do not anticipate. Having a cardiac diagnosis and surgery certainly shaped mine.”
Becoming a Foster Mom to a Baby on the Heart Transplant List
Lydia Palmer, NP-C, a pediatric cardiology nurse practitioner at Levine Children’s HEARTest Yard Congenital Heart Center, first met Anna when she was 5 weeks old.
“I distinctly remember walking into her room while she was waiting for congenital heart defect surgery,” says Palmer. “She was tiny — smaller than you’d expect for a baby her age — and quiet. She was also all alone in her room, which was notable since she was having surgery early in the morning.”
Palmer did an assessment and moved on with her night, having no idea the impact this tiny baby would have on her life.
A few months later, Palmer learned from a social worker colleague that Anna was being placed in foster care. At that point, Palmer and her husband — already parents to two young daughters — had been considering becoming foster parents.
“This seemed like the push we needed to go forward with this plan,” she says.
Anna eventually went to another foster mother, but in the meantime, Palmer and her husband continued to pursue becoming foster parents. Soon, Anna was back in the hospital and this time, she needed a heart transplant.
“While her initial repair was effective, her heart muscle was too damaged for her to have a good quality of life,” says Palmer.
Since Anna was in Department of Social Services (DSS) custody, that added an extra layer of difficulty for her transplant workup.
“Since a transplant is an amazing and selfless gift given at a time of immense sadness by another family, a recipient should be prepared to do everything possible to take excellent care of their gift,” says Palmer. “Since Anna’s custody was unknown at that point, she would need an option for an adoptive placement in order to be listed for transplant.”
Immediately, Palmer knew her family would be the placement.
“I went home and talked to my husband and we were in complete agreement that this would be our path, we could be the constant for her and we were well set up to take care of her,” she says. “We talked to our kids and they were also in complete agreement.
Ultimately, Anna waited in the hospital from March through September 2019 until her gift of life came.
“The second we got the call, my husband and I were present in the hospital, switching off with our other children and learning all of her care [needs],” says Palmer. “Anna came home with us on September 20 and we searched for our new normal.”
There have been many challenges in Anna’s heart transplant recovery. Palmer took time off work to set up her care, including home nursing, physical therapy, occupational therapy, feeding therapy and play therapy. Anna was placed on a feeding tube and wasn’t able to eat by mouth.
“In addition, Anna was still in DSS custody, so we had social workers, guardian ad litems and DSS nurses coming to check on her on a consistent basis,” she says. “Honestly, we were grateful for the help.”
Though Palmer has worked in medicine for nearly 20 years, this was new territory for her.
“There is really no way to describe what it’s like to be a medical mom except to say that it is all-encompassing and can be overwhelming,” she says.
Since her heart transplant in 2019, Anna has grown and has faced more challenges. She’s now in school and loves singing, acting and playing with her sisters.
“Knowing Anna and taking care of her has changed all of us,” says Palmer. “We are a different family now, one — I hope — with more compassion and understanding of the differences other people live with every day.
Caring for Anna has also changed Palmer’s career perspective.
“Coming to work with children who live with some of the same issues and challenges that Anna faces motivates me to not only care for the children, but also to take special care of the families,” she says. “Having a medically fragile child affects everyone —mom, dad, siblings — and often, we forget the impact that a hospitalization can have on the entire family.”
As Anna is a transplant patient, it is not lost on Palmer and her family that Anna has been given the ultimate gift of life.
“I remember every day that she is alive because of the selflessness of another family who made the ultimate gift of life,” she says.
Learn more about nationally recognized heart care at Levine Children’s.