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Luke, Will, and Oliver Manucy (from left). Without treatment during their mother’s pregnancy, Luke and Oliver likely would not have survived.
Matt and Sara Manucy were not surprised to hear about Sara’s diagnosis of twin-twin transfusion syndrome / TTTS in October 2011. Pregnant with triplets, Sara had been monitored for the syndrome by her fetal care physician in Charlotte, NC, for many weeks. Ultrasounds had shown that she was at risk for TTTS. But the Manucys were surprised by how quickly it came on, and how severe a case it was.
TTTS is a rare condition that occurs during pregnancy in identical twins who are monochorionic, meaning they share the same placenta. The shared placenta contains blood vessels connecting the blood supply of the twins so blood flows between the two fetuses. In twin-twin transfusion syndrome, that blood flow becomes unbalanced, so one twin (called the donor) receives too little blood and the other (called the recipient) receives too much. Without treatment, TTTS has mortality rates of 80 to 100 percent.
Sara’s diagnosis came 25 weeks into her pregnancy. Her doctor immediately referred her to the Fetal Care Center of Cincinnati for evaluation. She and Matt flew to Ohio two days later, leaving daughter Nora, 2, at home with family. “Guest Services arranged our transportation to and from the airport and made our hotel accommodations,” Sara recalls. “That may not sound like much, but it was. That level of service let us focus on making accommodations to miss work, and setting up care for our daughter.”
On Monday, Sara arrived at Cincinnati Children’s for standard TTTS testing, which includes an ultrasound, MRI and fetal echocardiogram. “The tests are done in the morning, and then we have a team meeting in the afternoon,” explains Melissa Brewington, RN, BSN, Matt and Sara’s nurse coordinator who has been with the Fetal Care Center since 2008. “The team meeting involves a maternal fetal medicine specialist and a pediatric surgeon, and they review all the findings from the tests.”
In Sara’s case, due to the TTTS, the donor fetus − later named Luke − had no amniotic fluid and what’s referred to as an absent bladder, where there is not enough fluid to fill it so it is not visible on an ultrasound. Oliver, the recipient, was facing heart malfunction. (The other triplet, Will, was unaffected by the TTTS.)
Surgical director Foong-Yen Lim, MD, and maternal fetal medicine specialist Ronald K. Jaekle, MD, determined the options available to the Manucys, one of which was selective fetoscopic laser photocoagulation (SFLP). “They walked us through all of the scenarios, good and bad,” says Sara. “They made sure we understood every picture, every procedure, and the risks involved. They were straightforward but gentle with their explanations.”
Matt and Sara opted to have SFLP the next day. In this surgery, the physicians use a camera called a fetoscope to look at the vessels on the placenta’s surface. They identify which vessels are connected improperly and then cauterize − or disconnect − the vessels so they’re not feeding into one another anymore.
A small tube called a trocar is used to place the fetoscope through the mother’s belly. Sara’s surgery took about 2½ hours. “The surgeons map the vessels once, go back again and make sure they have them all, and then they laser the vessels,” explains Brewington. “Then they go back again to make sure that none of the vessels have reconnected.”
The Manucys were told the 12 hours post-surgery were the most critical regarding the outcome of the procedure. They were concerned about Luke’s ability to survive. But at that 12-hour mark, tests showed that Luke had begun to develop a bladder and his amniotic fluid levels were more stable. They had hope.
Sara recovered at University of Cincinnati Medical Center, one of the three collaborative hospitals that make up the Fetal Care Center. Five days later, she returned to Cincinnati Children’s for follow-up tests. “The boys showed no negative signs. It was essentially a healthy pregnancy at that point,” Sara says. “Luke had a normal bladder and enough amniotic fluid to survive, and Oliver’s heart was doing well.” In short, the surgery was successful.
They flew back home to North Carolina and waited for the babies to arrive. Throughout the rest of her pregnancy, the Fetal Care Center continued to monitor Sara’s ultrasounds. Then, at 33 weeks, on Dec. 20, 2011, Sara gave birth to three little boys. “They were perfectly healthy, normal newborns,” Sara says in awe. “No premature lungs, no brain damage, no heart conditions.”
All three boys spent some time in the neonatal intensive care unit (NICU) after their birth. “They were called ‘feeders and growers,’ meaning they just needed to learn how to suck and swallow and gain some weight,” says Sara. They were each on oxygen but not for long. “In the end they were all home before my 40-week due date.”
According to Sara, the boys are much like they were in utero. “Will was the innocent bystander and he’s still that way. He doesn’t complain much,” she says. “Oliver, the recipient, is the big one and he’s got the saddest, loudest cry. And Luke is the fighter out of the three. You always know he’s there.”
Since 2004, the Fetal Care Center has provided more than 860 evaluations for twin-twin transfusion syndrome, including 54 triplet cases. They have provided fetal surgical interventions to 725 patients to treat TTTS and have performed more than 600 SFLPs.
“The goals of the Fetal Care Center are to educate our patients, explain their options to them, and work to have the best possible outcome for complicated fetal diagnoses,” Brewington says. “I am proud to work with such a strong group of nurses, doctors and ancillary support staff who are totally committed to those goals. It gives me great joy to know that I was part of the team that helped Sara and Matt take home three beautiful boys.”
The Manucys don’t know how to begin to express their appreciation. “We were put in what we believe was the best care possible and that gave us hope,” Sara says. “We felt we made the best decision for our family by going to Cincinnati. We will eternally be grateful.”
Luke, the donor twin, suffered from dangerously low amniotic fluid levels prior to surgery to treat twin-twin transfusion syndrome. There is no primary prevention for TTTS.
Oliver, the recipient twin, was facing heart malfunction prior to his mother’s fetal surgery to treat twin-twin transfusion syndrome.
If you would like to request an appointment or get more information about the Fetal Care Center of Cincinnati, call us at 1-888-338-2559 (1-888-FETAL59).
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