Peyton has undergone six surgeries. And that was only in the first year of her life.
Peyton was born with multiple congenital heart defects (CHD). Her parents Rachel and Ben got the diagnosis at the 20-week ultrasound. It quickly turned their excitement about having their first child into worry. They had heard of CHD before, but never would have imagined they would have a child diagnosed with it. Following the diagnosis, Peyton and Rachel were monitored closely by the fetal cardiology team at Children’s Minnesota up until birth.
Heart surgery at 4 days old
Peyton was born at The Mother Baby Center, a partnership between Allina Health and Children’s Minnesota, in August 2020. Rachel was able to hold her daughter for about a minute before she was brought to the Cardiovascular Intensive Care Unit (CVICU) where the cardiology team was waiting.
“It was one of the best and scariest days of our lives. We were excited to finally meet her but mostly nervous to see how she was doing and what was to come. I am so thankful she was diagnosed in utero so that I could deliver at Abbott Northwestern and have medical teams ready to take quick action once she was born,” said Rachel.
Peyton had her first heart surgery at only four days old. Her second two weeks later.
“Since Peyton was diagnosed in utero, we were able to come up with a treatment plan before she was born, which is critical when caring for babies with congenital heart defects,” said Dr. David Overman, chief of cardiovascular surgery at Children’s Minnesota.
Eventually, she was healthy enough to be discharged home; but would need to return to the hospital for other procedures.
Family-centered care
Peyton has spent a total of 75 days as an inpatient and Rachel and Ben were with her every one of those days. All along the way, the new parents never felt in the dark about the care plan for their daughter.
“The care team always kept us in the loop with what was going on and answered all questions we had, which we appreciated. The first conversation that stands out is the one when she was 3 days old telling us that she would be having surgery the next day. We knew she would need surgery but the quickness of it all came as a shock,” said Rachel.
“The conversations we loved the most were the ones telling us that we could go home!” remembered Ben.
Raising awareness about CHD
During their stay, Rachel and Ben realized they wanted to do something to give back and raise awareness about CHD, the most common birth defect. Each year, about 40,000 babies are born in the United States with a heart problem. One in four of these babies have critical congenital heart disease, a condition serious enough to require surgery or other medical procedures during their first year of life, like Peyton.
They came up with the idea to launch CHD Apparel, an online store selling heart-inspired clothing and merchandise where 50% of the annual profits are donated for CHD research.
“Peyton is doing amazing at home now and we can’t thank Children’s Minnesota enough for all of the care they provided her. We now want to support other kiddos and families affected by CHD,” said Ben.