Beyond Twin-Twin Transfusion Syndrome: One Year Later

Kaelyn was 16 weeks pregnant when she got the diagnosis: twin-twin transfusion syndrome (TTTS), a rare fetal condition where too much blood and amniotic fluid goes to just one baby. She’d never heard of it. Neither had Reynard, the twins’ dad, who is himself an identical twin. Unfortunately, the more they learned, the scarier the situation became. One doctor told them TTTS was often considered fatal for at least one twin, if not both. Another told Kaelyn there was no way she and both babies could survive the pregnancy.

Then they heard about Connecticut Children’s Fetal Care Center — and how the team there, led by a renowned fetal surgeon, was changing the outcome of conditions like theirs.

“It made me think: Maybe me and these kids do have a chance,” Kaelyn says.

Within days, they were welcomed into Connecticut Children’s to meet that team, including its famous director, Timothy Crombleholme, MD, (aka “Dr. C”). For Kaelyn, it was an immediate turning point.

“I’d been completely scared — until I met Dr. C and the team. It was so clear they knew what they were doing. I started thinking, ‘If doctors can fix all these other things that happen in our bodies, why not this?’” remembers Kaelyn. “That kept me going.”
 

The surgery Kaelyn had is so specialized, it’s performed only at fetal care centers — and among them, few achieve the kind of results Dr. Crombleholme is known for.

First, Dr. Crombleholme made a 4 mm incision through Kaelyn’s belly to the uterus. Then he used a tiny laser to disconnect key blood vessels between the twins, and poke holes in the membrane between them. Followed by a more routine procedure called an amnio reduction, this accomplished two crucial things: It increased the blood flow to both fetuses, and it allowed amniotic fluid to flow freely back and forth between them.

Now, both twins could develop normally, each getting the blood and amniotic fluid they needed. For the first time since the diagnosis, there was a real chance both would survive.

“Too often, when families get a diagnosis like this during pregnancy, they hear: ‘There’s nothing we can do.’ But that’s not always true,” says Dr. Crombleholme. “In many cases, we now have ways to help. There are options, and we’re here to help families find them.”

For the remainder of her pregnancy, Kaelyn was a frequent flier at the Fetal Care Center, with special tests like anatomy scans to make sure everything was on track. There were a few plot twists along the way, but with careful coordination between the Fetal Care Center and Kaelyn’s referring MFM — Elisa Gianferrari, MD, of Hartford HealthCare — everything turned out OK.

Last March, Kaelyn gave birth to two tiny but otherwise healthy boys. For being 10 weeks premature, they were remarkably strong. After a 64-day stay in the NICU to gain weight, they were ready to come home from the hospital to start everyday life with their parents and big sister, Sophie. It just so happened to be Mother’s Day.

During her pregnancy, even before she knew the outcome, Kaelyn sensed how important it was for her to talk about the experience. So she’s been opening up to her friends and social network about the twins’ rollercoaster pregnancy.

“Fetal conditions like twin-to-twin syndrome may be rare, but they do happen,” Kaelyn says. “I want to get my story out there to normalize it for anyone in a similar situation, to make it a little less of an unknown.”

She’s been touched by the response, particularly from other moms with complicated pregnancies.

“When I posted my story, I got so many responses. People wanted to know about TTTS, the surgery, and what it was like,” Kaelyn says. “It feels good to let them know there are doctors like Dr. C who know how to fix these things. It feels good to be able to give others hope.”

Of course, in addition to raising awareness about advances in fetal care, these days her social media posts are also filled with photos of healthy kiddos. The twins are thriving, each weighing in at 30 pounds and growing fast. Their personalities are growing too: sensitive Renny, happy-go-lucky Ben. Every day, they cause just the right amount of chaos.

“They still don’t sleep through the night, and they drive me nuts sometimes — but they’re perfect. I wouldn’t change a thing,” says Kaelyn. “I look at them and my daughter and think, ‘How did I get so lucky?’ I can’t believe how far we’ve come.”