Just 24 weeks into her pregnancy, Colleen and her husband Michael received devastating news: their baby, to be named Teagan, had a congenital heart defect called Tetralogy of Fallot with pulmonary atresia—meaning her pulmonary artery was completely missing. Doctors near their home outside New York City gave Teagan grim odds of surviving.
Research led Colleen to remarkable success stories from the opposite side of the country — at Lucile Packard Children’s Hospital Stanford. Frank Hanley, MD, director of our Children’s Heart Center, had developed a complex but effective repair, called unifocalization , for patients with Teagan’s condition. Hanley offered a very different prognosis to the first-time parents: a 98-percent chance of a positive outcome.
In a pregnancy like Colleen’s, early and accurate diagnosis is critical — as is care collaboration and planning. Our Center for Fetal and Maternal Health, under the medical direction of neonatologist Susan Hintz, MD, manages every aspect of care through a single point of contact, from weekly cross-discipline meetings, to coordinating Colleen’s care, housing and insurance needs from across the country, to planning the delivery team and post-delivery neonatal intensive care.
“You need the human integration and the technological integration,” says Yasser El-Sayed, MD, obstetrician-in-chief. “What makes the difference is the breakdown of silos between disciplines.”
Stephanie Neves, administrative coordinator for the Center for Fetal and Maternal Health was the point-person for weekly progress reports, echocardiograms and other updates sent by Colleen’s obstetrician in New York. She updated Colleen’s records and made sure all the doctors involved in her case had the same information.
“Stephanie understood how special the situation was for us,” said Colleen. “She never spoke to us as though we should be scared. I could be a normal mom. I thought: this is how other women must feel.”
When Colleen and Michael arrived, all the planning was done. And when Colleen went into unexpected early labor, the teams were ready. Teagan was delivered by C-section, and the NICU team took over, closely monitoring her to ensure she was getting enough oxygen.
The care team taught Teagan’s parents how to care for her during the three months before her surgery. Hanley successfully performed the unifocalization surgery — the most complex procedure in congenital heart surgery.
Today, Teagan is living a happy, normal life. “When I take her out, her face just lights up,” says Colleen. “And she waves, like she’s saying, “Hi everyone! I’m here!”