Twin-twin Transfusion Syndrome: Epsteins' and Conway Family Foundation's Story

Adam and Laura Epstein were excited to learn that Laura was carrying identical twin girls. But at a routine ultrasound, the northern, N.J., couple also learned the pregnancy was complicated by a life-threatening condition: twin-twin transfusion syndrome.

In twin-twin transfusion syndrome (TTTS), there are abnormal blood vessel connections between the twins in their shared placenta. TTTS affects roughly 10 to 15 percent of identical twin pregnancies. One twin gets too much blood and the majority of oxygen and nutrients, while the other twin doesn’t get enough.

Left untreated, TTTS results in the death of one or both fetuses in 70 to 80 percent of cases. 

The obstetrician who made the diagnosis recognized that the twins’ lives were in danger and referred the Epsteins to CHOP’s Center for Fetal Diagnosis and Treatment, one of the few medical centers in the world able to provide comprehensive care for both mother and babies with this complex condition.

TTTS fetal surgery treatment

The center serves more than 200 families with twin pregnancies each year and performs more than 50 fetoscopic laser surgeries annually. In this type of fetal surgery, a laser beam is used to close abnormal blood vessel connections between the twins. CHOP has one of the highest volumes of prenatal laser surgeries in the nation, with survival rates that rank among the best in the world.

“Going to CHOP gave them the best chance for a healthy childhood,” says Laura.

Three days after a comprehensive evaluation at the center, fetal surgeons successfully operated on the twins in utero. The Epsteins returned home, and a few months later, Rose Beatrice and Madeline Aliyah were born healthy and full term.

Yet many questions remain about the long-term prognosis of children like Rose and Madeline. For example, some fetuses affected by TTTS develop heart disease.

“There has been research done on TTTS, but it’s all focused on surviving the pregnancy,” says Adam. “There’s nothing out there about what it will mean for them down the road, if they survive. There’s nothing that tells you as a parent what you need to be prepared for.”

Seeking additional answers about TTTS

To address that need, the Epsteins and the Conway Family Foundation, a philanthropic organization run by the twins’ grandparents, have funded a multiyear study at CHOP to look at the neurocognitive and cardiovascular effects of TTTS in twins through age 2. The study aims to provide families more accurate information on what to expect both before and after birth and to identify any additional long-term consequences.

“This is pioneering work that wouldn’t have happened without philanthropy and stands to be transformational in the care of children with TTTS,” says Nahla Khalek, MD, MPH, who is leading the study.

Rose and Madeline, now 2, are among more than 100 pairs of twins the study will enroll. They recently visited the center for their first study evaluation.

“I think about where we started and where we ended up,” says Laura. “We feel very lucky. I’m very relieved to know that the best doctors are going to be telling me whether or not there are any lasting repercussions from their experience.”

Adam adds, “It’s great to support a first-class organization doing what we believe is incredibly important research.”

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