How Seren and Lola Survived Twin-to-Twin Transfusion Syndrome

During Kristin's pregnancy, she noticed that 1 side of her stomach stuck out more than the other. At the time, she didn't think it was a problem. It wasn't until later that she learned it was a symptom of twin-to-twin transfusion syndrome.

Kristin's specialist recommended a minimally invasive procedure called fetoscopic laser photocoagulation. The treatment was specifically developed for TTTS patients, and the health system was the first to provide the technology in the Kansas City area. Specialists at the health system continue to consult with patients about TTTS.

Using a small operating telescope with a laser inserted down a side channel, the doctor separated the problematic blood vessels joining the blood supplies of the 2 fetuses, allowing the twins to develop independently. All surgical procedures have risks, so when Kristin awoke from anesthesia, the first thing she asked was, "Do we still have the babies? Do we still have the babies?" The answer was a reassuring and relieving "yes."

But the journey was not over yet, as an unexpected second procedure lay in her future.

After the first procedure, staff from the Center for Advanced Fetal Care monitored Kristin to ensure the circulation in each of the now separated babies was normal. Unfortunately, it wasn't. The process had reversed itself: Baby Lola was receiving too much blood from Seren, and Seren was becoming dangerously anemic. The care team concluded either a vessel connection had reopened, or there was a problematic nest of blood vessels undetected during the first procedure.

"I think the second procedure was even more terrifying," she says. "The twins were sicker this time. We knew that if the doctor could not locate the nest of blood vessels causing the problem, we would lose at least one of the babies."

Amazingly, the doctor found the blood vessels, coagulated them and successfully halted the blood flow between the twins.

At 23 weeks, Kristin began having contractions. She went to The University of Kansas Health System's labor and delivery unit and remained on bed rest, closely monitored for nearly 10 weeks.

Every Friday night, after the Whittingtons had another week of gestation under their belts, they would have a party in the hospital room.

"We would celebrate being 1 more week closer to the best possible outcome," she says.

At 32½ weeks, Kristin was induced. The delivery was particularly difficult because after 9½ weeks of bed rest, she had no muscle tone.

"I could not have had a vaginal delivery if it weren't for the experienced perinatologists who knew how to deliver a breach baby. When Seren was born, they held her up for me to see and then put her on oxygen. When Lola was born, she was blue, as is typical, and the neonatology team placed her on a ventilator."

Kristin remained by her babies' sides at The University of Kansas Health System's Neonatal Intensive Care Unit (NICU).

"I cannot speak highly enough of the team," she says.

When Seren came off oxygen 4 days later, Kristin was able to hold her for the first time.

"It was so beautiful. I was in wonder as I marveled over her fingers and perfect face. As I held her, I looked at Lola, still in an incubator, right next to me, and my heart broke. Because she wasn't next to Seren. For the past 32 weeks, the 3 of us had been together, and Lola wasn't with us."

Lola stayed in the NICU and was placed on a ventilator for 7 days. And while Kristin was able to see, touch and sing to her baby girl, she could not hold her. This difficult time would soon pass.

Lola and Seren stayed in the NICU for 7 weeks. Once they transitioned home, they were able to continue their care at the health system's Neonatal Medical Home – a spacious facility that serves as a central location to manage the healthcare needs of medically complex children who may require specialized care or services. Here, a team of specialists including pediatricians, nurses, dietitians and others worked together to ensure Lola and Seren were healthy.

"It was so much more convenient than going to different offices or different appointments for different specialists, like we would have had to do if we had been part of a different health care system," Kristin says. "Because they had the same doctors they had in the NICU, the transition was pretty seamless."

Today, Kristin has 2 healthy, happy 4-year-olds who love climbing trees, Hello Kitty, singing and dancing.

"Seren is bold and truly believes she can do anything she wants to do," Kristin says. "Lola is more intentional with how she does things. And she has very strong views about fashion. She will pick out purses for me and clothes for her grandfather to wear."

For other parents whose unborn babies have been diagnosed with twin-to-twin transfusion syndrome, Kristin offers this advice, "Immediately schedule an appointment with The University of Kansas Health System, even if it's just for a consultation."

Kristin says she knows couples who have taken the wait-and-see approach and did not have the same happy outcome.

"I'm so grateful when I think about our time at The University of Kansas Health System. I often joke that they saved my daughters' lives and the nurses in the NICU saved my sanity," she says. "I received the most advanced medical treatment possible and unparalleled, whole person care."

The University of Kansas Health System was the first in the Kansas City region to offer advanced laser therapy for twin-to-twin transfusion syndrome, and has performed this treatment for more than a decade. Their experience is unmatched. Our Advanced Fetal Care team specializes in high-risk pregnancy and has saved the lives of more babies born with TTTS than any other hospital in the area.

We offer the most advanced care for complex pregnancy, including:

• Genetic counseling to help you make informed decisions about your pregnancy
• The most innovative diagnostic tests to detect issues sooner so they can be treated earlier
• The latest treatments and therapies to give your baby the best chance at life

Learn more about our advanced fetal care services and how The University of Kansas Health System is improving the lives of babies and their families.