Ellen and Bo Boyer’s first child, a daughter they named Brett, was diagnosed with a congenital heart defect (CHD) while in utero. The couple was told that their beloved daughter would require open heart surgery to survive.
For most, an atrioventricular septal defect is repairable 97% of the time.
For Ellen Boyer, the thought of being in the 3% never crossed her mind.
Despite attempts from the medical team to check on the well-being of the parents after the surgery, the Boyers’ sole focus was their daughter.
“We were not expecting for surgery not to go our way,” said Ellen Boyer. “I was blindsided and had not let myself go there. When it happened and people wanted to talk to us, we were not open to it.
“The wheels have been turning ever since,” admitted Boyer. “We knew that something was missing in the overall treatment of CHD.”
The Boyers hope they have found the missing piece of the treatment plan for families along their cardiovascular journey and that other pediatric hospitals follow suit.
The Brett Boyer Foundation recently made a gift in Brett’s memory to support the hiring of a psychologist in the Department of Pediatrics aimed at supporting the Pediatric Heart and Vascular Institute at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
“While the team can heal children’s hearts, there was still an emotional and mental component that needed to be addressed. We figured that if a rapport with a psychosocial expert was established on the front end, perhaps more families would be open to talking about their experiences. It’s important to have an expert, someone trained, to provide tools to manage a family’s emotions.”
In preparation for designating funds to assist with creating this new position, the Boyers asked other CHD parents for input. The responses flooded in with an overwhelming call for emotional support. It was the confirmation the Boyers needed to proceed with their plans.
Discussions with Scott Baldwin, MD, chief of the Thomas P. Graham Jr. Division of Cardiology, have been ongoing for more than a year. While the COVID-19 pandemic slowed down progress, it also heightened the need for psychosocial support of families dealing with serious medical issues.
An estimated 40,000 children are born with CHD in the United States annually.
At Children’s Hospital at Vanderbilt, the teams perform about 475 cardiac surgeries each year. The clinic sees 17,000 outpatient visits a year.
For many cases of CHD, diagnosis of the defect is found in utero. The first surgery is performed in the neonatal period. For the most severe cases, two surgeries in the first six months of life are required, followed by an additional surgery once the patient reaches 3 years old. All cases differ and some require multiple surgeries over a period of time.
The stress on patients and families is evident, said the Boyers.
“Parents and families of children with congenital heart disease can experience profound stress from the time of diagnosis, through hospitalizations, surgeries, and for years to follow, impacting the child’s development and the health of the entire family,” said David Bichell, MD, chief of Pediatric Cardiac Surgery. “Recognizing the special emotional toll that heart problems bring to a family, the far-reaching emotional trauma of hospitalizations, and the unfilled need for professional mental health support for congenital heart families, the Boyers have stepped in as a force for positive change.”
Baldwin agrees.
“We have become quite good at repairing CHD defects and at addressing the physical needs of our patients,” he said. “However, we are woefully inadequate at identifying or meeting the unique psychological needs of our parents and their families, who experience incredible stress.
“Providing for the psychological needs is the next major challenge in the treatment of CHD. The ability to hire a psychologist to focus on helping our patients and their families cope with a life-long process is a major step forward for our program.”
The Boyers hope the additional team member will take some of the burden off the staff, who, she says, shows unwavering compassion and empathy toward patients and families.
“I saw the love that they poured into us every single day, and they want to help but they are not mental health specialists,” said Boyer. “Once they healed the hearts, there was still an emotional and mental component that needed to be addressed. These children impact the staff. It is hard on them, too. I pray that the addition of this new team member takes a load off them.”
Bichell, the William S. Stoney Jr. Professor of Cardiac and Thoracic Surgery, added: “Ellen and Bo Boyer have navigated travails no one should ever have to face. Confronting the challenges of their personal congenital heart disease experience with strength and grace, the Boyers forged a commitment to reach far beyond, giving important support to the entire congenital heart community, including patients, families, health care providers and researchers.”
