Miracle babies highlight risk to twins

This Christmas season, two more red and white stockings hang in Kristen and Scott Baker's Covington home.

They are for the couple's identical twins, 6-month-old Carlie and Claire. Kristen calls them "miracle babies."

The Bakers were surprised last February to learn Kristen was pregnant with twins. Surprise turned to sorrow about a month later when they were told one or both twins were at risk because of twin-twin transfusion syndrome, or TTTS.

"No one in my family had ever heard of it," says Kristen, 27, who had normal pregnancies with her other children, ages 6, 4 and 16 months.

She now wants people to know that December is International TTTS Awareness Month, and that with diagnosis and treatment, more life-saving miracles are possible.

"This disease has largely flown below the radar," says Dr. Timothy Crombleholme, a fetal and pediatric surgeon who directs the Fetal Care Center of Cincinnati, a collaboration of Cincinnati Children's Hospital Medical Center, Good Samaritan Hospital and University Hospital. The center sees about 150 TTTS cases a year, he says.

The disease occurs in identical twin pregnancies in which the twins share a common placenta, like two trees growing from the same trunk. TTTS affects 10 percent to 15 percent of such pregnancies, Crombleholme says.

Normally, such twins exchange blood equally through connecting blood vessels. But for unknown reasons, the disease causes one twin to receive too much blood, which can cause heart failure; the other receives too little, and essentially becomes shrink-wrapped in its fetal membrane.

If untreated, the disease is usually fatal for one or both twins, Crombleholme says.

Determining the number of deaths is difficult because many cases are not diagnosed, but the Bay Village, Ohio-based Twin to Twin Transfusion Syndrome Foundation says conservative estimates are that 2,000 deaths occur annually in the U.S.

Early diagnosis and treatment are crucial. That's why foundation founder and president Mary Slaman-Forsythe stresses "the importance of finding out within the first three months of pregnancy if there is one placenta or two."

After a diagnosis, there are two main treatment options. One is amnioreduction, in which a needle removes excess amniotic fluid from one twin. It must be done early in the disease's progression and carries a low risk, but is successful in only about 20 percent of cases, Crombleholme says.