Twin-twin Transfusion Syndrome: Ethan & Reese's Story

Ethan and Reese Dicus were the twins who weren't supposed to be here today.

Instead, the team at the Center for Fetal Diagnosis and Treatment performed a successful laser ablation surgery to treat twin-twin transfusion syndrome while they were still in their mother's womb, and the twins overcame this life-threatening diagnosis.

Marti Dicus's 20-week ultrasound was normal. It also showed her and husband Vance exciting news: twins soon would be joining their family. The next ultrasound, however, was different.

"The medical staff at my local hospital in Delaware County noticed something, but at first they weren't too concerned," Marti recalls. "My obstetrician told me to go home, rest over the weekend and come back Monday."

Diagnosed with TTTS

When she returned to her local hospital, more tests were done. A procedure was performed to drain excess amniotic fluid that had been building up, making it hard for Marti to even make it down her porch steps.

The procedure, which uses an amniocentesis needle to suction out excess fluid, didn't make a difference.

"I could hardly walk, I was so bloated," Marti says. "After the fluid was drained I felt better, but by the end of the week I had gotten all the fluid back."

Marti was scheduled to return for another attempt to drain the fluid when her perinatologist told her she had made an appointment for Marti at The Children's Hospital of Philadelphia's Center for Fetal Diagnosis and Treatment. The tests had shown the twins had twin-twin transfusion syndrome or TTTS, a condition in which the blood passes unequally between identical twins that share a placenta (monochorionic). The condition was at stage 3.

"We spent the weekend scared to death and on the Internet," she says.

Learning more about TTTS

At Children's Hospital, more testing was performed and an additional two and a half liters of amniotic fluid were drained. And although the Dicuses had already been advised that the twins had TTTS, it was at the Center for Fetal Diagnosis and Treatment that the couple began to fully understand the implications of the condition.

When TTTS occurs, identical twins unequally share blood circulation through abnormal blood vessels connecting their umbilical cords and circulations. The interconnecting blood vessels, called anastomoses, allow blood that is normally shared across the placenta to pass disproportionately between the two fetuses.

One fetus, called the "donor" twin, pumps the blood to the "recipient" twin. As a result, the donor twin can become severely anemic from decreased blood flow, and can fail to grow and develop. Conversely, the recipient twin can receive too much blood, straining the fetus's heart and eventually leading to heart failure. Left untreated, TTTS can lead to death of one or both fetuses, and even affect the mother.

"Although our obstetrician and perinatologist had told us the diagnosis, we didn't fully comprehend what was said," Marti recalls. Then the couple talked to the fetal team at CHOP.

"It seemed like they weren't negative,” Marti says. "They explained both the bad and the good and were very comforting. They told us what could happen, and gave us all our options without telling us what to do."

Understanding the options

The team presented the couple with the information they needed to make a timely decision: advanced ultrasounds and fetal echocardiograms (specialized ultrasound of the fetal hearts), an educational TTTS video, and an experienced counselor to help them understand their options.

"Frankly, we were overwhelmed learning about something we never even knew existed before," says Marti. "And although my family was supportive, they were not optimistic. But we wanted to give the twins a fighting chance.

"I decided to have laser surgery."

Fetoscopic laser ablation

Children's Hospital is one of a handful of hospitals worldwide that performs fetoscopic laser ablation, a procedure to find and coagulate the interconnecting blood vessels of fetuses with TTTS.

"During the laser surgery, seven vessels were successfully coagulated," Marti says. "By the very next day, we saw positive results."

Before the surgery, the donor fetus had been wrapped in the amniotic membrane and positioned against the placenta. In addition, the donor fetus had no visible bladder. The recipient fetus had significantly increased amniotic fluid volume (polyhydramnios), and was developing hardening of the arteries. There also was 15-day discordance in size between the smaller donor and the larger recipient.

After the surgery, however, things improved. The team became openly optimistic as the recipient's excess amniotic fluid dissipated. The donor fetus's bladder could be seen emptying and refilling.

After two days in the hospital, Marti was released in the care of her primary obstetrician. A month after the surgery, an echocardiogram showed improvement in the recipient fetus's heart. "My perinatologist cheered when she saw the image," says Marti.

Modified bed rest was prescribed to help bring the babies to term, a difficult task for the mother of a 3-year-old. "We spent our days at the pool that summer, and I spent my nights resting."

Happy birthday

The twins were born Sept. 14, 2006, at 35 weeks gestation.

Ethan, the recipient, weighed 6 lbs. 7 oz. Donor Reese had almost caught up — he weighed 6 lbs. 3 oz.

Reese spent 10 days in the Newborn/Infant Intensive Care Unit (N/IICU); Ethan came home on day five with his mother.

"Both babies are in great health," says Marti. "They are starting to roll over and wrestle with each other. Both have two teeth, and when they bite each other, it hurts!" she laughed.

Thankful to CHOP

Thinking back, she remembers how difficult it was.

"When I went in to have the tests done, I was devastated by the results. I didn't know what was going on. But the whole fetal team was optimistic. I think I got part of their positive attitude."

During the entire process, she says, the doctors and nurses were fantastic.

"They treat you like you are part of their family — they do for you what they would do for their own kids," Marti says. "In the hospital, the doctors came in to check on me frequently. The nurse still calls me to see how things are going.

"If it weren't for them, I wouldn't have my babies," she says quietly. "They weren't supposed to be here but they are — and thriving. I had something to do with it, but the team at Children's Hospital made the difference."

Originally posted: June 2009

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