Beyond Twin-Twin Transfusion Syndrome: Renny & Benny’s Story

Secretly, Kaelyn and Reynard had been longing for twins. So when the pregnancy ultrasound showed not one baby but two, it was even more reason to celebrate. Their little family of three was going to be a party of five.

But at 16 weeks the identical twins, still in utero, were diagnosed with twin-twin transfusion syndrome (TTTS): too much blood and amniotic fluid was going to just one baby. Until recently, the diagnosis was considered fatal for at least one twin, if not both. One doctor told Kaelyn there was no way that she and both babies could survive the pregnancy.

"A healthy twin birth was no longer beyond imagination."

I was crying every day, thinking, What decision do I have to make? I don’t want to do this to my body, I don’t want to do this to the babies. I don’t want the worst possibility,” says Kaelyn.

Then Kaelyn’s maternal-fetal medicine specialist at Hartford HealthCare referred her to Connecticut Children’s Fetal Care Center, where fetal surgeon Timothy Crombleholme, MD, FACS, FAAP, is pioneering fetoscopic surgery as a way to treat high-risk pregnancies.

Here, Kaelyn and Reynard learned that a healthy twin birth was no longer beyond imagination.

“For many of the conditions that we treat, in many parts of the country, mothers are just told there’s nothing that can be done and they’re not really given any options,” says Dr. Crombleholme. “But for many conditions, there are interventions. We can help.”

“My MFM said that without Dr. C and the Fetal Care Center, I would’ve had to go to Chicago or Florida. I researched all about Dr. Crombleholme online, and we knew he was the best,” says Kaelyn. “It made me think: Maybe me and these kids do have a chance.”

A new specialty for a new generation

As medical specialties go, fetal care is one of the newest, only about 40 years old. It’s also one of the fastest growing, giving an entire generation of babies the chance to be born and grow up healthy.

Dr. Crombleholme, one of its true pioneers, gets much of the credit. Beyond his surgical skills, he’s dedicated his career to building fetal care programs in the U.S., training select teams to take up this specialty.

Connecticut Children’s Fetal Care Center is the latest. It’s the only fetal care center of its kind in the Northeast, and already a national destination for high-risk pregnancies.

Unlike many other fetal care programs in the U.S., it’s equipped for the full range of fetal care procedures, including open surgeries for conditions like spina bifida. And it’s known for expertly shepherding families through a crucial time. Make no mistake: While high-tech interventions often grab the spotlight, there are so many other aspects of good fetal care — like gathering all the right information and experts, and preparing everyone from parents to hospital teams for what’s ahead.

When Kaelyn and Reynard arrived at the Fetal Care Center, they were craving that kind of all-around support. Kaelyn, in particular, was craving information — lots and lots of information.

“I ask a lot of questions. But the more I know and the more I ask, I start to feel better,” Kaelyn says. With the babies’ health on the line, plus her own health as a mom to their 7-year-old daughter, every detail mattered.

To her relief, the Fetal Care team agreed.

“They answered every question I had, never made me feel bad about anything,” says Kaelyn. “These are people who you feel like you’ve known your whole life, but you’ve only just met them.”

“We’re going to help you get answers — and not in separate appointments with separate specialists,” says Jennifer Humphrey, MSN, RN, who is often a family’s first and most frequent point of contact. “We coordinate it so it’s one appointment with our team, so you get answers in one day and you’re not waiting for a call back or getting results you don’t understand. We want to make it a positive experience in a scary time.”

Fetoscopic laser surgery to correct twin-twin transfusion syndrome

Kaelyn had already had an amniocentesis procedure to reduce the fluid around the babies, which can help with twin-twin syndrome. By the end of her first day with the Fetal Care Center, they confirmed: So far, it was working. They settled into watchful waiting, relying on weekly, in-depth anatomy scans.

Around 18 weeks, everything changed. In a rare turn of events, the babies reversed roles. The baby who, up until then, had been getting more amniotic fluid and blood was suddenly not getting nearly enough.

“Baby A was really stuck. You could see his head looked like a half moon, because Baby B’s amniotic fluid was squishing him so badly,” says Kaelyn.

She needed surgery — now. The team set everything up for the next morning, first thing.

“I was super, super nervous. But then Jenn was there with Dr. C, and Leeza the ultrasound tech, and Allie the labor and delivery nurse. They were all there for me,” Kaelyn says. “That made me feel 100% more comfortable.”

During the minimally invasive procedure to correct twin-twin transfusion syndrome, Dr. Crombleholme did three things:

Using a tiny laser fiber, he disconnected blood vessels that had been passing blood back and forth between the twins — essentially giving each of them their own placenta, and with it, more even blood flow.
Using a 600 micron laser fiber, he poked holes in the membrane separating the boys so amniotic fluid could flow back and forth, equaling itself out.
Finally, he did another amnio reduction.

“I went into the operating room at 8 a.m., with an epidural and a tiny bit of sedation. I was done by around 10:30 a.m., with less than a 1/2-centimeter scar on my stomach,” says Kaelyn. “Everything went really well.”

Kaelyn and Reynard stayed in the hospital that night and the next, as the Fetal Care Center team watched to make sure both babies stayed stable. When they hit the critical 24-hour mark, they let relief wash over them.

“The surgery was a success,” Kaelyn says.

For high-risk pregnancies, a reason to hope

Life has a funny sense of timing. For months, Kaelyn and family had been looking forward to March 9 as the date of the twins’ baby shower. As it turns out, it was indeed a day to celebrate, but the party took place at The Hospital of Central Connecticut — where Connecticut Children’s own award-winning neonatologists staff the NICU. There, at 30 weeks and 1 day, Reynard III and Benjamin were born — Renny and Benny, for short.

“I guess the boys were just too excited to wait!” says Kaelyn. “They were born in the same exact minute. Truly identical twins in every way.”

Weighing in between three and three-and-a-half pounds each, the boys were premature but ready to thrive with a bit of special care. After a 64-day stay in the NICU to gain weight, they headed home to meet their big sister, Sophie — arriving home over Mother’s Day weekend. Between two newborns and a soon-to-be second-grader, the rest of spring and summer has passed in blur of joyful chaos.

To Kaelyn, the journey to get here sometimes still feels beyond imagination.

She remembers all too well when the babies were first diagnosed, and that it seemed like a lost cause. She remembers searching the internet for information about high-risk pregnancies, turning up endless scary stories until she learned about Dr. Crombleholme.

And she hopes that, for any parent-to-be in a similar situation, a story like this one will pop up instead — so Connecticut Children’s Fetal Care Center can give them a different ending too.

“For other moms- and dads-to-be out there, I want you to know that there are people like Dr. C. who can help,” Kaelyn says. “These are people who know what they’re doing, who can really be there for you and give you a different outcome. They really are amazing, amazing people. I cannot thank them enough.”