When Jason and Caroline set off for the hospital to give birth to their son, they were thinking mostly of the normal things: how they’d handle feeding, what he’d wear when he came home from the hospital and the logistics of caring for their older child while they were away. But they soon realized Andrew’s life was not going to take the path they first envisioned.
Confirmed at birth, their baby was diagnosed with coarctation of the aorta (CoA), which is a congenital narrowing of the aorta, and ventricular septal defect (VSD), a hole in the heart that separates the heart’s lower chambers. VSD can cause changes in blood flow and increase pressure in the lungs, requiring the heart to work harder. It can affect feeding and digestion in the first crucial weeks of a baby’s life.
Andrew was brought to Children’s Healthcare of Atlanta Heart Center at Egleston Hospital, and it quickly became apparent Andrew would need open heart surgery at 12 days old. With no previous experience dealing with Congenital Heart Defects, Caroline and Jason appreciated how the staff met with them, thoroughly explained Andrew’s condition, drew diagrams and told them to the best of their ability what they could expect. They were reassuring, and Caroline said she knew they were very experienced in this type of surgery. The lactation consultants also helped her continue to nurse Andrew as much as possible.
“The lactation consultants and the Feed the Heart, Feed the Mom, and Feed the Mind program provided us with comfort and support during the earliest days in Andrew’s journey,” Caroline said. “Having no previous knowledge of what to expect with a heart warrior baby, we were in completely unchartered territory. COVID restrictions made more common forms of support a larger challenge, but I was quickly able to connect with other mothers and parents through local Facebook groups like Heart Moms, Georgia Heart Moms and Kids at Heart to ask questions and seek encouragement from families who have been through similar experiences.”
A year later, Caroline acknowledges that no one truly understands the heart warrior journey unless they’ve been through it. When she can, she makes it a point to help other moms with heart kids who may struggle with guilt that they’ve somehow done something wrong.
“They need to know that’s not the case, and it’s not that simple,” Caroline said. “Your child has unique needs that need to be met, just like we all have unique needs. An idea we discussed at my mother’s fellowship group at church is that your child is an original, you are an original and there has never been another pair like you. You must trust that instinct. You know them best.”
Andrew is now a thriving 1-year-old who loves to eat, dance, spend time outdoors and crawl after his older brother. Caroline says he’s full of life, and her journey as a heart mom has taught her that “happy, healthy babies come through all forms of grace, trials and intervention, and there is always a place for gratitude.”
“Each piece of motherhood is equally purposeful and trying, and the beauty is often seen best in hindsight,” she said. “A wonderful lactation consultant comforted me during Andrew’s inpatient stay by repeating to me that ‘baby gets what baby needs,’ and despite all the fear and what seemed at times like chaos, that was the true bottom line. The best thing that can be done as a mother is to take one day at a time with the goal of meeting our child or children’s needs. This is true whether you had an uncomplicated delivery, a traumatic birth, a child with congenital defects or you’re just struggling with the everyday grind of raising kids.”
Andrew sees Dr. Rachel McKay at Children’s Healthcare of Atlanta Cardiology’s Lawrenceville clinic.
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.