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Community Corner

Coping with Twin to Twin Transfusion Syndrome

TTTS affects multiple gestational pregnancies where one placenta is shared.

Pregnancy can bring on its share of complications, especially for women carrying multiples. Yet education and a plan can literally be a lifesaver. Just ask Port Washington resident Blair Metrano, the mother of Myles and Wyatt, who celebrated their one year birthday this month. 

Blair Metrano discovered she was carrying twins in August 2009. 

"Within three weeks I found at there was an issue," she said. "An ultrasound showed there was a discrepancy in size." 

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The radiologist referred Metrano to a maternal fetal specialist at North Shore University Hospital, where she learned here was a chance of Twin Transfusion Syndrome, or TTTS, which can be potentially fatal to the fetuses. 

TTTS affects identical twins and multiples sharing a placenta that contains abnormal blood vessels that connect the umbilical cord, affecting the circulation of the twins, according to The Twin to Twin Transfusion Syndrome Foundation, in Ohio. What's more, the twins may not receive the same amounts of fluids and nutrients, and they may not share the placenta equally. 

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December is International TTTS Awareness Month, prompting Metrano to tell her story.

"The disease kills more babies each year than SIDS [sudden infant death syndrome] but many people haven't heard of it," said Metrano, whose twins were affected by acute TTTS.

Upon learning about the TTTS foundation, Metrano spoke with the organization's founder, Mary Slaman-Forsythe. Slaman-Forsythe urged Metrano to visit Columbia Presbyterian Hospital, which had a TTTS clinic.

There, she found "doctors who have gone around the world and studied the syndrome with other doctors," Metrano said. "They are in daily conversations with other doctors who have been dealing with the syndrome longer." 

At Columbia, Metrano received an original diagnosis of Unequal Placental Share with indications of TTTS. Treatment involved weekly detailed ultrasounds and monthly echocardiograms. In the following weeks, doctors saw an intermittent absence of diastolic flow and "draping," where the membrane that separates the two babies starts to drape around one of the babies.

"They talked to me at length about my options," Metrano said. "They said it was a tenuous pregnancy, so I could terminate the pregnancy completely. Or I could selectively reduce the pregnancy where they would cut off the supply of nutrients to one of the babies and that baby dies. That was because TTTS is very risky for both babies."

She continued, "Potentially one baby could die, or both babies could die. Or one baby dies, which overloads the surviving baby and the surviving baby could end up severely impaired. If one baby dies the damage is already done to the surviving baby."

But, Metrano said, "Nothing in our belief system would let us choose to terminate in any way."

"The syndrome is unpredictable," Slaman-Forsythe wrote in a letter to care providers. "But, we have seen babies make it that would have been terminated. We have even seen the symptoms go away from one appointment to the next."

By Dec. 15, Metrano had acute TTTS. She began having contractions, and one baby was in heart failure. She delivered that day at 27 weeks of gestation.

After birth, TTTS ends, Metrano said. But there are lingering issues from premature birth. One baby was hospitalized for two and half months, the other three and a half months. 

Though babies often cope with issues associated with premature birth, Metrano says the future for her twins is wide open. "They are survivors," she pointed out.

Cautioning other parents, Metrano said, "When you find out you are pregnant with twins the most important thing to ask is is one placenta being shared." If the answer is yes, see a maternal fetal specialist.

With TTTS, there are 15 most important questions to ask at every doctor visit. These are listed on the TTTS Foundation website, TTTSfoundation.org.

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