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

Whittington Twins

November 13, 2018

At week 19 of Kristin Whittington's pregnancy, she arrived for her scheduled sonogram appointment, having been told just three weeks earlier that she and her husband, Chuck, were having fraternal twin girls. As Kristin lay on the table for what she expected to be a routine exam, she received disturbing news: The babies were actually identical twins – a higher-risk pregnancy than fraternal twins – and they had twin-to-twin transfusion syndrome, or TTTS.

TTTS is a disorder of the placenta that occurs in about 10-15% of monochorionic, identical-twin pregnancies – meaning it affects identical twins (or higher multiple gestations), who share a placenta. Sharing a placenta can create problems if one baby receives the majority of nutrients and blood, while the other baby doesn't get enough. Without treatment, TTTS can result in many complications and often leads to the loss of one or both babies.

"I'd never heard of twin-to-twin transfusion syndrome. I didn't know what the doctor was talking about," Kristin says. "As he continued the sonogram, I knew there was a problem, but I didn't know how serious it was. I lay there on the table and silently cried."

A dangerous diagnosis

The Whittingtons learned that one baby, Lola, had too little placenta to provide enough oxygen and necessary nutrients for normal growth or even survival. The other twin, Seren, had enough placenta but was overloaded with blood transferred from her smaller sister.

Their doctor gave them two choices: take a wait-and-see approach or schedule a consultation with Carl Weiner, MD, maternal fetal-medicine specialist at The University of Kansas Health System. The Whittingtons were sitting in Dr. Weiner's office just hours later.

"Dr. Weiner was able to see we had a more serious case than first thought," Kristin says. "He had a very reassuring way about him. As harrowing as those days were, I trusted his care and his timing.

Warning signs

During Kristin's pregnancy, she noticed that one 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.

Whittington Twins

Other TTTS warning signs include:

  • Rapid weight gain
  • Sudden, dramatic increases in abdominal size
  • Abdominal pain
  • Decreased fetal movements
  • Premature contractions
  • Swelling in hands and feet

Laser procedure saves lives

Dr. Weiner recommended a minimally invasive procedure called fetoscopic laser photocoagulation. The treatment was specifically developed for TTTS patients, and Dr. Weiner was the first to bring the technology to the Kansas City area.

Using a small operating telescope with a laser inserted down a side channel, Dr. Weiner separated the problematic blood vessels joining the blood supplies of the two 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. Dr. Weiner concluded either a vessel connection had reopened, or there was a problematic nest of blood vessels undetected during the first procedure.

Ten days later, Kristin had a second laser procedure.

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

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

"His expertise is invaluable," Kristin says. "I felt I was with the best doctor for this condition. He treated me with so much empathy and care."

Delivery at 32 weeks

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.

Each time Kristin anxiously asked, "Dr. Weiner, what's going to happen?" He would say calmly, "I'm not worried. Don't worry until I get worried. And when I get worried, I will tell you."

"That was incredibly reassuring to me," she says.

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 one 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 three 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.

Continuing care

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."

Healthy, happy preschoolers

Today, Kristin has two 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 Dr. Weiner and the team 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."

Whittington girls

The best care for high-risk pregnancies

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.

We offer a variety of appointment types. Learn more or call 913-588-1227 to schedule now.

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