HeadLines Spring 2009: New Life Emerges from Risk & Uncertainty

For most mothers-to-be, the second trimester ultrasound is one of the highlights of pregnancy, a chance to walk away with sonogram photos, a healthy diagnosis and, if they’re lucky, the sex of the baby. But for Lisa Davila, who was 18 weeks pregnant with twin girls, that moment marked the beginning of a frightening journey that only ended on her delivery date with a rare and complicated surgery on one of the babies even before she was fully born.

Parents Lisa and Michael Davila feel
fortunate to be holding both twins,
Tessa (left) and Juliana

Though one twin appeared healthy, the other was diagnosed with an upper-airway obstruction. While the child remained in the womb, there was nothing to be done. But if the child was born and separated from her mother’s oxygen supply before surgery could be performed, she would die. Davila’s physicians were left with one risky and uncertain option called an ex utero intrapartum treatment, or EXIT, procedure. Immediately after the healthy twin was born, the second twin would have to be partially delivered by Caesarean section and left connected to the mother’s oxygen until a tracheostomy could be performed to give her an artificial airway.

Even with this option available, the twins’ outcome remained uncertain. Although the first twin seemed healthy, there was potential for the complication to affect her development and even Davila’s health. Also, EXIT procedures are performed so rarely that little outcomes data exists. “We got the impression that we shouldn’t plan on bringing two babies home,” recalls Davila, a nurse by training who now works as a technical writer and lives in Baltimore County, Md. “I did some research, and it all points to a poor prognosis in these cases.”

Still, she and her husband decided to push forward.

It would require significant planning and coordination on the part of Davila’s care team at Hopkins, including maternal and fetal medicine, nursing, anesthesiology, the EMTs and, finally, pediatric head and neck surgeon Stacey Ishman. If all went well, it would be among just a few times in history that an EXIT procedure had been performed successfully on twins. “There are hardly any twin EXIT procedures ever performed around the country,” Ishman says. “But this baby’s chance of surviving without it was zero percent.”

Dr. Stacey Ishman

Despite the difficult odds and the anxiety leading up to the due date, Davila arrived at the hospital for a scheduled C-section smiling and optimistic. “I wasn’t nervous at all,” she remembers. Even so, she and her husband had only allowed themselves to decorate one nursery. “We figured we could always add more if we needed to,” she says, “but to take it all away would have been devastating.”

In the end, the family needed a second crib after all. Immediately after the birth of the first twin, a healthy girl the Davilas named Juliana, Ishman and her colleagues began the EXIT procedure, delivering just the head, arms and chest of the second twin while the rest of the baby remained inside and attached to the mother’s circulation. After performing the tracheostomy, baby Tessa was born less than an hour after her sister and taken to the NICU. A month later, she was home.

Tessa still has the breathing tube and will eventually need a second surgery to remove it and open her airway. Those things will come in time, when she’s reached an appropriate weight and size to handle the operation. For now, her parents are amazed that everything went so well.

 “When she did so great, we were scrambling, because it turned out we’d need two of everything after all,” Davila says. “We’re just in shock every day. Tessa smiles and laughs and does these normal baby things. We look at her and are just so happy. Sure, it’s a challenge at times with the tracheostomy, but big deal—that’s nothing. Compared to other babies in the NICU, she’s doing fantastic.”