Health Professional News

Harriet’s story: Rare fetal heart tumor successfully removed by maternal-fetal-cardiology team

At their 20-week ultrasound, Hannah and Josh learned their unborn daughter had an extremely rare cardiac tumor called a pericardial teratoma, which can grow to compress her tiny heart and result in cardiac failure. Their baby Harriet’s chance of survival was less than 40%. From 2000-2020, only 55 fetal pericardial teratomas were reported worldwide.

Their maternal fetal medicine physician, Dr. Oscar Viteri, at the perinatal clinic in Des Moines, IA, referred the couple to the Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota, where they would be under the care of a multi-disciplinary team of highly trained surgeons and maternal-fetal medicine experts. Just days later, the couple met with Dr. Lisa Howley, director of fetal cardiology at Children’s Minnesota, Dr. Joseph Lillegard, director of open fetal surgery at MWFCC, and Dr. Saul Snowise, medical director at MWFCC. 

Harriet today

Every week for the next several months Hannah and Josh made the four-and-a-half-hour drive from their Iowa home to the MWFCC in Minneapolis for fetal echocardiograms and an occasional fetal MRI while her doctors continued developing her care and delivery plan. At 32-weeks, the MWFCC team discovered hydrops fetalis, with fluid accumulating in two or more compartments of Harriet’s body, indicating significant worsening heart failure.

The MWFCC team delivered baby Harriet through a complex c-section procedure called Ex-utero Intrapartum Treatment (EXIT), where the baby’s arms and chest are delivered first while the head and legs remain in the uterus. Harriet remained attached to the umbilical cord and placenta to receive oxygen, blood and nutrients while Dr. Lillegard, Dr. Frank Moga, associate chief of cardiac surgery at Children’s Minnesota, and her care team removed about 80% of the tumor. More of the tumor was removed after the EXIT procedure. 

Harriet spent the next three months at Children’s Minnesota’s neonatal intensive care unit (NICU), infant care center (ICC) and cardiovascular care center (CVCC). During this time, Drs. Moga and Lillegard performed an open-heart surgery to remove the rest of Harriet’s tumor. Dr. Moga later performed a second open-heart surgery to repair a narrowing of Harriet’s aorta where the tumor originated. 

Harriet in the hospital

Harriet is now over a year old and home with her family in rural Iowa, living as a fairly typical toddler. She will continue to be under the care of her team from Children’s Minnesota’s cardiology, oncology and gastroenterology programs until she’s done growing.

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Alexandra Rothstein