Anne and Josh’s journey with their second child, Ollie, was not what they expected. About halfway through the pregnancy, the couple learned their son had a rare congenital heart defect. But almost three years and multiple open-heart surgeries later, Ollie is running and dancing thanks to his resilience and the comprehensive heart care provided by the cardiovascular program at Children’s Minnesota.
“To see Ollie thriving and enjoying life – words can’t express just how grateful we are for him, for the care that we’ve gotten, because he wouldn’t be here without Children’s Minnesota,” described Anne.
Early detection of congenital heart defects
The news of Ollie’s congenital heart defect came at Anne’s 20-week anatomy scan at Minnesota Perinatal Physicians, part of Allina Health. The provider immediately made an appointment for the couple at the Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota, where they met with Dr. Lisa Howley, fetal cardiologist with The Children’s Heart Clinic and medical director of fetal cardiology. Dr. Howley confirmed Ollie had truncus arteriosus, a rare heart defect where the heart’s two main arteries don’t form like they’re supposed to. The result is one large artery where oxygen poor and oxygen rich blood mix and go out to both the lungs and body.
“Early detection of congenital heart defects is crucial,” emphasized Dr. Howley. “Diagnosing Ollie before he was born allowed our fetal cardiology team to partner with Anne and Josh to create a delivery and treatment plan for when he was delivered. Our approach improves outcomes and gives families clarity on what to expect during an otherwise uncertain time.”
Questions answered
The big question for the couple after the diagnosis – what would be their son’s quality of life? Their answer came during an appointment with the surgeon who would operate on Ollie after he was born, Dr. David Overman, cardiothoracic surgeon with The Children’s Heart Clinic and chief of cardiovascular surgery at Children’s Minnesota.
“I just had all these questions and concerns,” said Anne. “Dr. Overman was calming and reassured us that we were asking the right questions. He really put us at ease, and we left feeling our kid has a good shot at leading a great life.”
Birth and first heart surgery
Ollie was born in March 2022 at 39 weeks at The Mother Baby Center (TMBC) in Minneapolis, a partnership between Allina Health and Children’s Minnesota. Soon after, Ollie was seamlessly transported to the cardiovascular intensive care unit (CVICU) at Children’s Minnesota, where a team of specialists were ready to provide the care he needed.
At just 10 days old, Ollie underwent his first open-heart surgery to begin repairing the heart defect. After surgery, he had several tubes connected to his tiny body to keep him stable. It can be shocking to see as a parent. But the care team was there to help and answer their questions and provide support.
“They talked about all the different kinds of lines he would have and what they were for. The whole team did so well to educate us,” described Josh. “It was helpful because you really just don’t know until you’re in it.”
Ollie had a second heart surgery about two weeks later to make additional repairs.
Lifelong care for congenital heart defect
Finally, after spending the first six and a half weeks of life in the hospital, he was well enough to go home. But his journey with a congenital heart defect has and will be lifelong.
He had a third open-heart surgery at 14 months old in May 2023. More surgeries will be needed in the future. He’s also had multiple heart catheterization procedures and has regular appointments with his cardiologist, Dr. David Gremmels, pediatric cardiologist with The Children’s Heart Clinic and chief of cardiology at Children’s Minnesota.
In addition to his congenital heart defect, Ollie has a genetic mutation affecting his pulmonary arteries – the blood vessels that carry blood from the heart to the lungs. This means that when he gets a respiratory illness like a cold or RSV (respiratory syncytial virus), it hits his body hard. Because of this, Ollie has had many additional stays at Children’s Minnesota.
Living life to the fullest
Despite the medical challenges, Ollie is surpassing milestones. He loves to run, dance and play with his 5-year-old brother – and he does it all with a smile on his face. While the journey with their second son was not what they expected, Josh and Anne are amazed at their son’s resilient spirit and are grateful for the entire care team at Children’s Minnesota.
“It’s amazing to see how much Ollie has grown the last couple years. While his heart defect is part of him, it doesn’t define him,” said Josh. “Words can’t express just how grateful we are for him and the care we’ve received every step of the way.”
