A year ago, fear and uncertainty surrounded Heidi's pregnancy. Her unborn son, Duncan, had an undiagnosable mass growing rapidly around his neck, up the left side of his face and into his chest cavity. She and her husband, Nick rode a roller coaster of unanswered questions and misdiagnoses before being referred to the team at SSM Health St. Louis Fetal Care Institute.
“The team at Fetal Care Institute were the only ones willing to accept our extremely rare case and offer us the options we needed. But knowing now who and what the Fetal Care Institute is, we couldn’t have found a better fit for our family.
“I get tears just thinking about them, and you can ask anyone who knows me, I don’t cry easily!” says Heidi.
Through a series of tests, the team at the Fetal Care Institute narrowed the fetal diagnosis down to either a teratoma or lymphatic hemangioma, but couldn’t confirm the diagnosis until delivery. As the baby developed, Heidi had regular MRIs, fetal echocardiograms (echos) and weekly appointments to monitor the baby’s well-being and the growth of the mass. Duncan was delivered via C-section at SSM Health St. Mary’s Hospital - St. Louis at 37 weeks and despite fears that his airway might be obstructed, he came out screaming! The mass began shrinking on its own (and continues to do so), and while it remains a bit of a medical mystery, Heidi reports that Duncan is a happy, healthy baby boy.
“Nick and I enjoyed our weekly visits to Fetal Care Institute and even started to look forward to them. We took comfort in the friendships we made with the team there, in their honesty and genuine caring for us and for Duncan. It always felt like they saw Duncan’s rare diagnosis as an inspiring challenge instead of a burdensome hurdle. They answered our questions honestly and without judgment, which we greatly appreciated.”
To celebrate Duncan’s first birthday, the family has generously donated an iPad to Fetal Care Institute, which will be used for patient education.
“This will be a great tool for us to use when showing diagrams, introducing terms and sharing additional resources to help families better understand their baby’s diagnosis,” program coordinator Katie Francis says.
Learn more about Duncan's journey here.