Fifteen weeks into her pregnancy, Beth Boyette heard the doctor’s words in disbelief: A diagnosis of twin-twin transfusion syndrome / TTTS meant her twin girls would likely die within the next five days. But the doctor offered an ounce of hope to Beth and her husband Mark, who live in a Cleveland suburb. “We’ll check with Cincinnati,” he said, and made a call to the Cincinnati Fetal Center.
The Fetal Center told the Boyettes to come to Cincinnati for testing. In the meantime, Beth and Mark were left to wonder if their girls would live long enough for Beth to even undergo the tests. “We came down Tuesday night for a full day of tests on Wednesday,” Beth says. “The whole drive to Cincinnati was miserable, because we didn’t know if we’d get down there and they’d say, ‘They’re gone.’ ”
Twin-twin transfusion syndrome occurs in about 10 percent of pregnancies that are monochorionic, which means that the twins share a placenta. The placenta’s blood vessels connect the blood supply of the twins so blood flows unevenly between the two fetuses. That means that one twin − called the donor − receives too little blood and the other − called the recipient − receives too much.
Struggling to Stay Alive
In the Boyettes’ case, daughter Grace, their donor baby, was struggling to live on almost no amniotic fluid, and daughter Faith, their recipient baby, had way too much. “Grace basically had been shrink wrapped, and Faith was swimming in a huge cavern,” says Beth. That imbalance of fluid is typical of twin-twin transfusion syndrome. Additionally, the donor twin often will experience poor fetal growth, while heart failure is common in the recipient twin.
On that Wednesday morning, Aug. 31, 2011, Beth had an ultra-fast fetal MRI, echocardiogram, and ultrasound, the typical tests for TTTS. That afternoon, she and Mark met with their care team − consisting of a nurse coordinator, surgeon, and maternal-fetal medicine specialist − to discuss treatment options and risks.
“Everyone was so kind. It was such a wonderful experience even though it was incredibly frightening,” Beth recalls. “I really liked how they had the ultrasound set up. In every other ultrasound I’ve had, I was straining to see the screen. At the Fetal Care Center, there is a huge screen high up on the wall and I could easily see what was going on with my babies.”
A Caring Approach
Lisa Pickett, RN, the Boyettes’ nurse coordinator, emphasizes the comprehensive approach provided by the Fetal Center. “We try to do whatever we can to explain everything to them. This diagnosis is very overwhelming to the families,” she says. “Usually they are plugging along in their pregnancies and this comes up as a complete surprise and is rather urgent. They get a lot of information at once and decisions need to be made quickly.”
Pickett draws on her prior experience as a labor and delivery nurse when working with her patients in the Fetal Center. “I like to give my patients the details of what the surgery entails,” she says. “It can be daunting.”
That day Beth and Mark learned that Beth was a candidate for selective fetoscopic laser photocoagulation (SFLP). In this surgery, the physicians insert a camera called a fetoscope through a small incision in the mother’s abdomen. They use the camera to look at the vessels on the placenta’s surface and identify which ones are connected improperly. The vessels are then cauterized − or disconnected − so they’re not feeding into one another anymore.
The Fetal Center performs this surgery on women who are at least 16 weeks' gestation and no more than 26 weeks' gestation. At 16 weeks and four days, Beth just met the minimum gestation and underwent surgery the next day.
‘Everything Looked Totally Different’
“The night after the surgery was the first time I felt movement. I felt a kick,” Beth says. “The next morning we went back for another ultrasound. Everything looked totally different. We could see our little girls moving around.” That movement meant that both babies’ situations were improving, although they each had some heart valve leakage. Beth went on Procardia to help treat that, and the heart conditions eventually corrected as the pregnancy progressed.
Beth and Mark returned to Cleveland where Beth was on bed rest for the remainder of her pregnancy. She continued to be monitored by the Fetal Center during this time. “Then, at 26 weeks, my water broke,” Beth says. But the girls held on for a bit longer, thanks to strict hospital bed rest and close monitoring for the next four weeks.
The Babies Arrive
At just under 31 weeks on Dec. 11, Faith and Grace born. “We named the girls the day we found out about the twin-twin transfusion syndrome,” Beth says. “We always said it would be God's grace and our faith that would bring them home to us well and whole.” Both had breathing problems at birth, but recovered quickly. They were also treated for bleeding in the brain, which is common in premature babies born prior to 32 weeks. After spending 33 days in the neonatal intensive care unit (NICU), the girls got to go home on Jan. 13, 2012, joining older siblings Ryan, 2, and Rachel, 12.
The Fetal Center will track that delivery information in their database for outcomes research they perform to aid in future cases of twin-twin transfusion syndrome.
Today, Faith and Grace are doing well. Beth is amazed at how much they went through before even being born. “I feel like I was blessed with the opportunity to be a part of a miracle,” she says. Of the care she received at the Fetal Center, she says, “There couldn’t be any place in the world that handled this situation better. Lisa’s personality meshed with ours, the doctors were personable, and everything felt like we were all in it together. I can’t say enough how thankful we are to them because they saved our girls. I owe them the world.”