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Siblings by heart: Delilah and William’s story

High school sweethearts, Rebecca and Joe, always dreamed of having a family. After marrying in 2017 and getting pregnant in 2019, the couple was thrilled for the birth of their first child.

At Rebecca’s 20-week ultrasound, her obstetrician (OB) noticed something didn’t look quite right with the baby’s heart measurement. Rebecca and Joe anxiously went back a week later for a follow-up appointment.

“That was a terrifying moment realizing there is something wrong with our baby’s heart,” said Rebecca.

The diagnosis

To find out more about what the issue was, they were referred to Dr. Lisa Howley, director of the fetal cardiology program at the Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota. At that visit, they learned their baby had a congenital heart defect called coarctation of the aorta, which is a narrowing of the large blood vessel that leads from the heart and makes it difficult to pump blood throughout the body. Coarctation of the aorta makes up about 4-6% of all congenital heart defects.

“We felt total darkness. There were so many unknowns and we were scared what this meant for our baby,” Rebecca recalled when they learned of their baby’s diagnosis.

Rebecca's ultrasound
Rebecca's ultrasound

Rebecca continued seeing Dr. Howley to monitor the baby’s heart throughout her pregnancy. It was expected that the baby would likely need surgery to repair the defect soon after birth.

“It was considered a high-risk pregnancy and that made us worried. As first-time parents, we weren’t prepared for something like this to happen,” said Rebecca.

Delilah’s heart surgery

Rebecca gave birth to Delilah on April 2, 2020, at The Mother Baby Center in Minneapolis, just a few weeks after the COVID-19 pandemic hit Minnesota. Delilah had an echocardiogram shortly after birth and the aortic arch did not yet appear critical so the medical team was hopeful that surgery may be delayed. But over the first week of life as Delilah’s heart adapted to functioning on its own, the aortic arch obstruction became worse and she went into respiratory failure. “She just crashed before us. It was so scary,” Rebecca recalls.

Delilah in the hospital

Delilah was intubated and a few days later underwent a complex heart surgery to fully repair her aortic arch through a median sternotomy, which is an incision made in the middle of the chest, performed by Dr. Robroy MacIver, surgical director of the Heart Failure and Heart Transplant program at Children’s Minnesota. The surgery was successful, but Delilah’s recovery in Children’s Minnesota’s cardiovascular intensive care unit (CVICU) was slow. She experienced complications like a blood clot and vocal cord paralysis, which affected her ability to swallow and make noise.

“Delilah was enduring so much as a newborn, it was hard to watch her go through this,” said Rebecca.

Eventually, Delilah’s strength built up and after four weeks in the hospital, she could finally go home.

“After all we went through as a new family, it was the best feeling for all of us to be home,” said Rebecca. Delilah continued to have regular checkups with Dr. Marko Vezmar, medical director of interventional cardiology, at Children’s Heart Clinic.

A second pregnancy and familiar diagnosis

While Rebecca and Joe were happy parents to Delilah and keeping up with her at home, Rebecca learned she was pregnant again with their second child. “We were nervous yet hopeful to get pregnant again,” recalls Rebecca.

Rebecca and Joe went for a 16-week ultrasound to do an early screen on the baby’s heart, but were stunned to learn this baby had the same congenital heart defect as Delilah.

“We didn’t believe it at first. We were shocked and devastated all over again,” recalls Joe.

However, Rebecca and Joe had the perspective of going through this process before with Delilah, and felt confidence and trust with the cardiology experts at Children’s Minnesota.

“We told ourselves, ‘We’ve been through this before and have gotten through to the other side. We can do this,’” said Joe.

Throughout Rebecca’s second pregnancy, she again saw Dr. Howley at the Midwest Fetal Care Center for frequent monitoring of the baby’s heart.

William’s experience

William was born on Oct. 23, 2022, at The Mother Baby Center in Minneapolis. At just 2 days old, William underwent heart surgery to repair his coarctation, performed by Dr. Frank Moga, associate chief of cardiac surgery. William’s coarctation was less severe than Delilah’s and the repair was made through his side.

Thankfully, he recovered with a speed that impressed his care team and brought immense relief to his family. William went home less than a week after birth.

William in the hospital

Delilah and William today

Rebecca, Joe, Delilah and William in a photo

Today, Delilah and William are doing well and both see Dr. Vezmar for regular checkups at Children’s Heart Clinic.

Delilah is an energetic 2-and-a-half-year-old who loves to sing, dance and help take care of her baby brother. At 3 months old, William is a healthy, happy baby. He coos, smiles and loves to be held.

“We are so grateful to the entire cardiology team at Children’s Minnesota for taking such great care of our kids,” said Rebecca. “Our kids are heart warriors and the Children’s Minnesota team are our heroes.”