Rare syndrome that threatens identical twins is scary but increasingly treatable - LivewellNebraska.com
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Rare syndrome that threatens identical twins is scary but increasingly treatable

Melissa Haen confronted the fact that she could lose the twins inside her, and that brought home how much she loved them already.

“You don't think you can love two babies that much if you haven't even met them,” said Haen, of Newman Grove, Neb. “You bet I did.”

Haen, 30, underwent successful fetal surgery seven months ago in Colorado to save her twins about 21 weeks into her pregnancy.

Before birth, the twins inside Haen had a rare condition called twin-to-twin transfusion syndrome. The condition involves unequal sharing of the placenta and blood supply between identical twins and threatens both twins' prospects of survival.

At one time, twin-to-twin transfusion syndrome, or TTTS, almost certainly killed one or both babies in utero. Today, specialists know more about the syndrome, and some fetal care centers can perform surgery to save the babies in utero.

Like Melissa and Jesse Haen, Jaime and Tanner Bacon learned about the syndrome through harsh experience. They knew they were having twins about six weeks into Jaime's pregnancy in 2013, but at 20 weeks one of the twins began to suffer heart failure from TTTS.

“Oh, it was extremely scary,” said Tanner Bacon. The twins, born in November, 30 weeks into the pregnancy, are doing well at Omaha's Methodist Women's Hospital.

Specialists continue to gain understanding of the syndrome, which affects about 15 percent of identical twins.

“We've learned how to diagnose it” more effectively, said Dr. Todd Lovgren, a maternal fetal medicine specialist at the Methodist Women's Hospital Perinatal Center. “And we're getting better and better at treating it.”

Methodist saw 12 such pregnancies last year. The Alegent Creighton Health system saw five cases, and the Nebraska Medical Center saw four.

TTTS is diagnosed far more frequently today. One reason is that the number of twins in the United States rose to 131,269 in 2011, up from 68,339 in 1980. The increased use of infertility treatments has caused the number of twins to rise. So has the fact that women are having babies later in life, the U.S. Department of Health and Human Services reported.

Dr. Timothy Crombleholme, director of the Colorado Fetal Care Center in Aurora, said specialists now appreciate that identical twins “by definition are high-risk pregnancies.” Those pregnancies carry higher odds of small bowel and heart problems, among other challenges.

Specialists also know more about TTTS. Years ago, Lovgren said, people simply talked about a “stuck twin” because, with TTTS, one twin appears on the ultrasound to be stuck against the uterus.

Now specialists begin watching identical twins for signs of TTTS with ultrasound around the 16th week of pregnancy. They look for lots of fluid around one baby and little fluid around the other.

Dr. Neil Hamill, a maternal fetal medicine specialist at Methodist, said they also look for the heart function of the babies and blood flow in the babies' umbilical cords, hearts and brains.

Doctors say, for simplicity's sake, that in TTTS, one baby “donates” blood and fluid to the other. The donor baby may be much smaller than the “recipient” baby. The syndrome can lead to heart failure and, after birth, long-term developmental delays for either baby.

Lovgren said beginning about 25 years ago, physicians started draining the excess fluid from around one twin, a strategy that sometimes helps diminish the problem. But other times the fluid quickly develops again.

Crombleholme said specialists began devising a laser surgery against TTTS in the early 1990s and have worked to refine it ever since. The surgeon uses laser technology to close certain vein and artery connections between the babies. Only about 15 fetal surgery centers use the laser surgery extensively, he said, including his in the Denver area, and centers in Cincinnati and Houston.

“We have made significant inroads in the treatment of twin-twin,” he said. “Year after year, the results have been getting better and better.”

Crombleholme said that both babies survive the surgery up to 85 percent of the time now. That doesn't mean physicians have mastered the disease. “There's a lot that we don't know about the syndrome,” he said.

Melissa Haen said she and her husband, 31-year-old Jesse, knew they were going to have identical twins. Jesse works for the federal Natural Resources Conservation Service and Melissa is in graphic design and marketing for a Battle Creek, Neb., seed company.

Her obstetrician in Norfolk referred her to Methodist Women's Hospital for an ultrasound in late February. A doctor spotted complications and mentioned twin-to-twin transfusion syndrome, which would soon mean a great deal to the Haens.

Similarly, specialists at Methodist saw that one of the Bacon twins — named Madison today — suffered from heart failure 20 weeks into the pregnancy.

Methodist specialists referred both the Haens and the Bacons to Crombleholme's fetal-care center, which is part of Children's Hospital Colorado.

There they learned about the surgery's risks to each twin. And yet the price of doing nothing would very likely result in death for one or both of the twins.

Jaime Bacon, a 34-year-old insurance saleswoman from Decatur, Neb., said she was emotional, restless and stressed before the procedure took place. The Bacons — husband Tanner, 35, farms in the Decatur area — were given a three-ring binder containing statistics, research results and stories about TTTS and the procedure.

She was surprised to learn that the procedure was a relatively recent advancement.

“I was more scared than anything,” she said. “It was good information, but it was very scary.”

The ultrasounds following the surgeries were moments of truth. “We didn't breathe until we heard both” of their hearts beat, Jaime Bacon said.

The Haens' babies were born 32 weeks into the pregnancy, on May 31.

“The best thing was both of them came out crying,” Melissa Haen said. “They were both screaming. I thought that was awesome.”

Nolan weighed 2 pounds, 11 ounces and Lincoln weighed 3 pounds, 14 ounces. Today, Nolan is about 12 pounds and Lincoln weighs 17 pounds. They bottle feed and eat rice cereal and baby food.

Madison and McKenzie Bacon were born on Nov. 19, 30 weeks into the pregnancy. Madison weighed 3 pounds and McKenzie a bit less. By this week, Madison weighed 5 lbs., 4 ounces and McKenzie a few ounces less. They were still being fed through feeding tubes in their noses.

The girls are “coming along good,” Tanner Bacon said. The Bacons hope to take them home later this month.

Hamill said ultrasounds and MRIs of all four babies are highly encouraging.

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