Anne and Josh’s pregnancy with their second child, Ollie, was not what they expected. At 20 weeks, the couple learned their son had a rare congenital heart defect (CHD). While the news was unexpected, the fetal diagnosis allowed their care team to develop a treatment plan for before, during and after Ollie’s birth.
Referrals lead to early detection of congenital heart defect
The journey to Ollie’s CHD diagnosis included two timely referrals. First, Anne’s obstetricians at Women’s Health Consultants, Emily Margaret Hawes-Van Pelt, MD, and Lynne Gibeau, MD, referred her to Minnesota Perinatal Physicians (MPP), part of Allina Health, for an early consultation due to advanced maternal age and the couple’s first son delivering prematurely at 35 weeks. Both factors meant Anne’s pregnancy was considered high risk.
Complex heart defect identified
At MPP, Anne met Suresh Ahanya, MD, at 15 weeks. Based on Anne’s risk factors, Dr. Ahanya recommended a follow-up visit at 20 weeks for a Level II ultrasound which would provide a comprehensive look at Ollie’s developing organs to screen for potential abnormalities.
For the Level II ultrasound at MPP, the couple met with Heidi Thorson, MD, who identified that their baby had a complex heart defect. The discovery led to the second referral, this time to the fetal cardiology team at the Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota.
Diagnosis confirmed, delivery and care plan created
At MWFCC, Anne and Josh met with Lisa Howley, MD, a fetal cardiologist with The Children’s Heart Clinic and medical director of fetal cardiology at Children’s Minnesota. Dr. Howley diagnosed Ollie with truncus arteriosus type 1, a rare congenital heart defect where the heart’s two main blood vessels don’t form correctly. Instead of two separate blood vessels, 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 the family and their obstetric team to create a personalized delivery and treatment plan. Our approach improves outcomes and gives families clarity on what to expect during an otherwise uncertain time.”
The care plan for Ollie focused on treatment after he was born. Anne would give birth at the Minneapolis location of The Mother Baby Center, a partnership between Allina Health and Children’s Minnesota, then Ollie would be seamlessly transferred to the Cardiovascular Care Center (CVCC) at Children’s Minnesota.
Sharing patient care
Through the remainder of Anne’s pregnancy, Dr. Howley and the cardiovascular team at Children’s Minnesota continued to share care with Anne’s primary obstetrics team of Dr. Hawes-Van Pelt and Dr. Gibeau at Women’s Health Consultants.
“We greatly appreciate the opportunity to collaborate and share patient care with MPP and MWFCC,” said Dr. Hawes-Van Pelt. “We are confident that our patients are in excellent hands, and we know that we will be kept informed of and included in their care. We are grateful that we can maintain our relationships with our patients while working with trusted colleagues.”
“When the unexpected happens in a pregnancy, it is even more important to have continuity of care with the trusted obstetric team working in conjunction with the perinatal and neonatal specialists to achieve the very best outcomes for mother and baby,” Dr. Gibeau said.
Birth and heart surgeries
As planned, Ollie was born in March 2022 at 39 weeks at The Mother Baby Center – delivered by one of the partners from Women’s Health Consultants – and transferred to the CVCC where a team of specialists were ready to provide the care he needed.
At 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 body to keep him stable. 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, Ollie 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, David Gremmels, MD, 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.
“It’s amazing to see how much Ollie has grown the last couple years,” said Josh. “While his heart defect is part of him, it doesn’t define him.”
