Fetal Treatment Program Home Page

Physicians save unborn twins from rare, life-threatening malady

The Patriot Ledger 09-20-2003

ABINGTON - Bernadette Bregoli was not a dedicated viewer of The Learning Channel’s ‘‘A Baby Story,’’ the reality show that follows an expectant mother from pregnancy through birth.

But Bregoli, 37, who was expecting identical twins, did tune in by chance to an episode about the birth of identical twins. As the episode unfolded, Bregoli became horrified: the twins on the show had Twin to Twin Transfusion Syndrome (TTTS), a rare and severe syndrome that limits the chances of survival for both babies.

Bregoli’s husband David reassured her that the syndrome could never happen to their twins; that the chances were too slim. Bregoli’s mother agreed. The syndrome occurs in only 5 to 15 percent of all identical twins.

Two weeks later, it happened.

At what should have been Bregoli’s routine 19- to 20-week ultrasound, South Shore Hospital obstetrician Dr. Achilles Athanassiou detected the syndrome.

‘‘I just started to cry,’’ Bregoli said.

Dr. Athanassiou told the Abington couple there was an 85 percent chance of losing the babies. He gave them several options including surgery. Bregoli asked to go home so she could think. But there was no time.

By 10 that same night, she was on an operating table at Women and Infant’s Hospital in Rhode Island undergoing laser surgery.

TTTS occurs when identical twins share a single placenta. One baby, the donor twin, pumps some of its blood to the other twin, the recipient. The donor twin’s motions become limited because the fluid is very tight around it, said Dr. Athanassiou. The other baby has heart failure because it gets more blood than it can tolerate. Without treatment, ‘‘eventually both babies will die,’’ he said.

In a case as severe as Bregoli’s, he said, there is only a 10- to 20-percent chance of both babies surviving.

Dr. Francois Luks, of the Fetal Treatment Program at Brown University, performed the surgery, which aims to block all the vessels that run from one twin to the other. Each twin gets a separate portion of the placenta.

Even after the surgery, the unborn twins’ chances didn’t look good. Six weeks went by before the doctors saw any improvement. Then slowly, the recipient twin began to lose fluid around her head, although there was still excess, while the donor twin progressed slightly more quickly.

Weekly ultrasounds were necessary for Bregoli, but the results weren’t always encouraging. Even when they were, the Bregolis could not get excited because the problem could return at any time.

Bregoli remembered the excitement she felt after ultrasounds during her first pregnancy with now 3-year-old Lauren. She wanted to share the pictures of her unborn child with family and friends. With the twins’ ultrasounds, she felt differently. She said she did not want people to become attached to the babies because she did not know if they would survive.

Bregoli was put on modified bed rest, and was to be off her feet as much as possible. She was not allowed to drive, clean or carry in groceries.

‘‘I think the hardest thing was that I felt helpless,’’ she said. ‘‘I knew I had these extremely sick babies in my belly and I couldn’t do anything.’’

The TTTS Foundation sent Bregoli a book with stories and phone numbers of people who had experienced the syndrome. Bregoli never found time to call the organization’s support group though. ‘‘I didn’t want to hear the negatives,’’ she said. ‘‘I was trying to be optimistic.’’

At 37 weeks, Bregoli met Dr. Athanassiou at New England Medical Center, where he also practices. She delivered Olivia vaginally and started to deliver Lea the same way. Because Lea’s cord emerged before she did, the doctors performed an emergency Cesarean section. Lea was rushed to the Newborn Intensive Care Unit before Bregoli ever saw her.

After 10 days, the Bregolis were back at home in Abington with their twins, who joined big sister Lauren. Olivia, who was the recipient twin, has an obstruction in her pulmonary artery because her heart did not function properly throughout the pregnancy. However, her functions are not limited and she grows and eats like any other baby. If she still has the obstruction by age 2, she’ll have an angioplasty.

‘‘They’re miracles,’’ said David, of the girls. ‘‘We really beat the odds.’’

Bernadette and David are especially grateful to Dr. Athanassiou for his work and care. ‘‘He really has a heart of gold,’’ David said. ‘‘Without him, these girls wouldn’t be here.’’

The Bregolis want people to know that there is support for TTTS on the South Shore, through doctors and others who have lived through it. They are happy to share their story and information with those experiencing the syndrome. Next year, they hope to organize a fund-raiser for the TTTS foundation on the South Shore.

Those months were the most frightening of their lives, the couple said. ‘‘It made us a lot stronger, but not less emotional,’’ Bernadette said. ‘‘There’s no obstacle now that we can’t overcome.’’

Now the Bregolis watch ‘‘A Baby Story’’ every morning, because Lauren, who hopes to someday be a doctor, loves it.

Copyright 2003 The Patriot Ledger