If you see baby August today, it would be hard to tell the difficult road he’s already been on in his young life. By all accounts he is your typical baby — smiling and playing with his big brother, Oliver, and big sister, Elodie. But just weeks before he was born, August had already been on quite the medical journey. His mom, Elizabeth, or “Bitsy,” says there’s significance in his name.
“August was the month we almost lost our baby, but more importantly, it was the month he beat the odds.”
Summer of uncertainty
The first sign something could be wrong with baby August came when Bitsy went for her 20-week ultrasound where her provider noticed a heart abnormality.
To confirm what was going on with August’s heart, Bitsy was referred to the cardiovascular program at Children’s Minnesota. She was seen by Dr. Lisa Howley, the medical director of fetal cardiology, who diagnosed unborn August with an Ebstein anomaly — a rare heart defect that affects the tricuspid valve, which is one of the heart’s four valves.
Best chance of survival
Babies in the womb diagnosed with an Ebstein anomaly unfortunately face tough odds for survival – and even face a 45% mortality rate.
Because of those odds, specialists at Children’s Minnesota checked in on Bitsy’s baby’s health every two weeks. However, the situation went from bad to worse.
An ultrasound at 31 weeks showed August’s heart was failing and his chance of long-term survival was getting worse. Dr. Howley believed an experimental approach could be August’s best chance.
Dr. Howley talked with the family about the option of trying high-dose indomethacin, a non-steroidal anti-inflammatory drug (NSAID), in the same class of drugs as ibuprofen.
“I discussed the risks and benefits of the therapy, including that it may not work. It’s not an easy conversation, but we believe families are an important part of the care team,” Dr. Howley recalled.
The risks were high. But, when Dr. Howley asked the couple if they wanted to pursue the experimental therapy, Bitsy remembers saying, “If he’s fighting then we’re fighting.” And fight he did!
Beating the odds
Bitsy was admitted to The Mother Baby Center in Minneapolis, a partnership between Children’s Minnesota and Allina Health, and was put on high-dose indomethacin. And, it was successful! After less than 24 hours baby August’s heart was showing signs of improvement. August’s heart improved well enough that Bitsy was discharged and carried out her pregnancy at home with very close monitoring.
August was born in late September 2021. Just two days later, he had open-heart surgery — a scary situation for any family and even more so for a newborn. The care team discussed every step with the family and Bitsy felt prepared when the day came for August’s surgery, as the care team tapped another resource, the Mayo Clinic – Children’s Minnesota Cardiovascular Collaborative. Dr. David Overman, chief of cardiovascular surgery at Children’s Minnesota, and Dr. Joseph Dearani, director of pediatric and adult congenital heart surgery at the Mayo Clinic, participated in August’s surgery together. Dr. Dearani was brought in due to his specific expertise with Ebstein anomaly. A collaboration between Mayo Clinic and Children’s Minnesota, along with care from Allina Health team – meant teams of expertise collaborating to give August the best possible outcome.
August went home after spending three weeks in our Cardiovascular Care Center. “I thought we would be there three months. He just crushed it, he did so well,” describes Bitsy.
He’s home with family and doing great with ongoing monitoring by the care team. Bitsy knows her son will need more care in the future, but she could not ask for better care from August’s team at Children’s Minnesota.
“Dr. Howley was pulling out all the stops to make sure August got the best possible care. I never felt more cared for — they were doing everything in their power to make sure this kid had a shot,” described Bitsy.
“From diagnosis, treatment, delivery and surgery, Bitsy and her husband, Tony, showed amazing resilience and strength. The family is an inspiration to me and my colleagues,” said Dr. Howley.