Katie and Betsy cherish every moment with their 5‑year‑old son, William. They remember his loud laughter on his first roller coaster ride at the Mall of America and his excitement at Vikings, Twins and Wild games. Their family loves doing anything that makes William smile. But there was a time when they weren’t sure these moments would ever happen. William was born with heterotaxy syndrome – a rare condition that affects the heart and other organs. It was the beginning of a long heart journey – one that would show just how strong William and the family could be.
Heart defects diagnosed during pregnancy
When Katie and Betsy found out they were having a baby — they were thrilled. Once they learned it was a boy, they started dreaming about his future. At their 20‑week anatomy scan, everything changed. Their midwife in Fargo, North Dakota, saw something unusual with the baby’s heart. For a comprehensive diagnosis, the couple was referred to the specialists at Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota.
At MWFCC, a fetal echocardiogram (echo) confirmed that Katie and Betsy’s unborn child had heterotaxy syndrome with multiple, severe heart defects. The heart was on the right side of the chest instead of the left and was flipped around – known at mirror-image dextrocardia. There was also a hole in his heart, issues with the arteries that go to and from his heart, and the valve the sends oxygen-poor blood to the lungs. For the mothers-to-be — their world stopped.
“I was dumbfounded,” Katie said. “How is it possible that all of that is happening to a tiny fetus? You just don’t expect something like that could happen to a baby.”
Delivery and treatment planning
With a diagnosis, the care team worked with the family to plan the delivery and William’s treatment after birth. Katie and Betsy met with one of the heart surgeons in the cardiovascular program at Children’s Minnesota and talked through possible surgeries. They took a guided tour of the Cardiovascular Care Center (CVCC). They also spoke with the neonatal team who would be there during Katie’s delivery at The Mother Baby Center, another collaboration between Allina Health and Children’s Minnesota.
The couple temporarily relocated from Fargo to the Minneapolis/St. Paul metro a few weeks before the care team planned to induce Katie’s labor. When Katie showed signs of preeclampsia, she was induced a week early. After three days of labor, she delivered William by cesarean section.
The new family of three were able to enjoy a few minutes together before William was taken to the cardiovascular intensive care unit (CVICU) at Children’s Minnesota.
Candidate for a heart transplant
Tests in the CVICU showed that William’s heart defects were even more severe than expected. Even so, he was more stable than the team predicted. With a full understanding of his condition, the cardiovascular team determined that William was a strong candidate for a heart transplant.
“Hearing heart transplant was a shock at first. But once we processed those emotions, we focused on what we could control as we waited for a heart for William,” said Betsy.
After William was born, Katie and Betsy also learned what other organs were impacted by heterotaxy syndrome. William was born without a spleen — which is common for a baby with the syndrome. There were also issues with his spinal cord and intestines, which would also require surgery.
Waiting for a heart transplant
Waiting for a new heart was not easy. Katie and Betsy did everything they could to give William a normal life. They brought items from his nursery to his hospital room and took him on walks outside. They even set up a small inflatable tub so he could enjoy the outdoors.
“The wait for a transplant would not define us. We made a commitment to make experiences and memories,” said Katie.
William gets a new heart
After 304 days, the call finally came. It’s a moment they won’t forget. They were sitting outside Children’s Minnesota with William who was watching traffic — one of his favorite things to do — when Katie and Betsy heard someone running toward them.
“It was Sam, one of the nurses, running with the phone with the biggest smile on her face,” said Katie.
The call was from Holly Thompson, a heart transplant nurse practitioner, who told them a heart had been accepted for William!
The next day, the transplant team, including Dr. Robroy MacIver, surgical director of the heart failure and transplant program, put in the new heart. Two weeks later, Katie and Betsy were finally able to bring him home.
Care with heart
Today, four years after his transplant, William’s heart is healthy. He has regular visits to The Children’s Heart Clinic and has seen other specialists for needs related to heterotaxy syndrome. Katie and Betsy call him “absolutely phenomenal and utter perfection.” They are grateful for the cardiovascular team and the support from heart transplant nurse practitioners Beth Johnson and Holly Thompson.
“It’s hard to describe how incredible Holly and Beth have been,” said Betsy. “We wouldn’t have been as successful without them guiding us along the way.”
