In the early morning of Sept. 11, 2001, Jennifer Miller was preparing to make history. She lay in pre-op, ready for the Boston Children’s Hospital Fetal Cardiology team to perform the world’s first fetal cardiac intervention on her unborn son.
Two weeks earlier, at her 18-week screening ultrasound, Jennifer and her husband Henry were told their son would be born with hypoplastic left heart syndrome (HLHS), a life-threatening heart defect where the left ventricle is small and underdeveloped. If born with HLHS, their son would immediately undergo multiple open-heart surgeries to repair his heart and, later, may need a heart transplant.
In this video, learn what to ask at your 18- to 22-week screening ultrasound to make sure your baby’s heart is healthy. You can also download the questions and share them with your ultrasound technician.
Dr. Wayne Tworetzky, director of Boston Children’s Fetal Cardiology program, offered the Millers another option. Because their son’s heart condition was detected early, doctors could expand his underdeveloped valve in utero, potentially allowing his heart to grow normally for the remainder of Jennifer’s pregnancy.
The Millers agreed to the experimental procedure. Tworetzky’s explanation “made perfect sense to us and helped us make our decision,” says Jennifer. “We understood that if they could open up our son’s valve to allow more blood through, we would have a baby with four fully functional chambers of the heart and avoid the devastating issues that come with HLHS.”
History took a terrible turn that morning of Sept. 11. After the second plane hit the World Trade Center, Boston-area hospitals cancelled all elective surgeries. Jennifer and Henry were sent home.
Two days later, they returned to try again. In the aftermath of the 9/11 attacks, the couple remained calm and confident. “When faced with a diagnosis that could significantly impact our son’s quality of life, the idea that something could improve that quality of life by leaps and bounds made the decision relatively easy,” says Jennifer.
Jack was born on Nov. 21, 2001 with a healthy heart. The successful fetal cardiac intervention — performed by a team that included Tworetzky, Dr. James Lock and Dr. Audrey Marshall of Boston Children’s Heart Center, along with specialists from Brigham and Women’s Hospital — was the first of its kind, landing Jack in the Guinness Book of World Records. Boston Children’s has since performed over 185 successful fetal-cardiac interventions on babies just like Jack.
Beyond valve dilations at 18 months and 13 years old, Jack has experienced few complications. An avid athlete, he plays high school basketball and baseball, and recently took up surfing.
At Jack’s most recent bi-annual checkup, Tworetzky encouraged his full participation in competitive sports. “Jack acknowledges his medical fame as an important part of his origin story,” says Jennifer, “But he has so few limitations that he doesn’t think of himself as a heart patient day to day — which is enormously fortunate.”
For more information about fetal cardiology and resources for expectant parents, visit bostonchildrens.org/fetalheart.