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CMC to offer treatment for deadly twin syndrome

CMC to offer treatment for deadly twin syndrome

Credit: JOHN D. SIMMONS / Charlotte Observer

At left, Addison now 17 pounds and being held by mom Halley Wilkes, and Makayla, 16 pounds and in the arms of Dr. Courtney Stephenson, made their first visit last week to the surgeon who delivered them in August and saved their lives.

by Karen Garloch / Charlotte Observer

WCNC.com

Posted on February 23, 2010 at 2:09 PM

CHARLOTTE, N.C. -- By the time she was 4 1/2 months pregnant, Halley Wilkes was as big as most moms are at 7 months.

She was expecting twin girls and knew she'd gain a lot of weight, but this felt wrong.

She couldn't sit or sleep, and she had trouble breathing.

Ultrasound showed the babies' lives were threatened by a rare abnormality called twin-twin transfusion syndrome.

One of Wilkes' twins was getting too much blood. She was surrounded by an unusually large amount of amniotic fluid, and her heart was enlarged from working too hard.

The other twin wasn't getting enough fluid. Called the "stuck twin," she appeared to be shrink-wrapped in the amniotic membrane and stuck to the uterine wall.

Without treatment, the twins would surely have died.

But today, they're nearly 7 months old and healthy thanks to a laser surgery that is now available in Charlotte.

On June 1, Dr. Courtney Stephenson, a maternal-fetal medicine specialist at Carolinas Medical Center, performed the procedure on Wilkes in Cincinnati, where Stephenson had spent part of the last two years learning the technique from one of the country's experts.

Last week, Stephenson's mentor, Dr. Timothy Crombleholme, visited CMC to make sure everything was ready for her to start operating here.

"I feel like I'm here for a commencement," said Crombleholme, director of the Fetal Care Center of Cincinnati. "I have every confidence in Courtney. I'm so impressed with her dedication to making this happen in a responsible way. "

CMC is the only center in the Carolinas that offers the surgery, and one of about a dozen such centers in the country.

Stephenson's first Charlotte procedure will happen "whenever it comes in the door."

She and her team of doctors, nurses and ultrasound technicians are monitoring several women who are pregnant with twins and could become candidates for the surgery.

Or, like Wilkes, the first patient could show up with little notice.

15 percent affected

Stephenson met Wilkes on May 18, when she was referred by her obstetrician.

Tests confirmed what Stephenson suspected -twin-twin transfusion syndrome.

It affects about 15 percent of identical twins who share the same placenta. The problem develops when they don't share equally in the placenta's blood supply.

Within hours, Stephenson tried a first-line treatment, called amniocentesis reduction. With a needle into the uterus, the doctor withdrew three liters of fluid from the twin who had too much.

Two days later, half the fluid was back. In a week, it was all back, and the babies were in trouble.

That's when Stephenson talked to Wilkes and her fiance, Trey McAuliffe, about having laser surgery. It would obliterate the abnormal blood vessels in the placenta that were sending too much blood to one twin at the expense of the other.

Without treatment, Stephenson said the twins probably would die. With the surgery, there was a 67 percent chance that both would survive, and a 91 percent chance that at least one would live.

There was one problem: The surgery wasn't yet available in Charlotte.

But Stephenson, 39, had plans to bring it here.

She had come to work at Carolinas Medical Center in 2004 with nine years of experience operating on fetuses during pregnancy. A natural next step would be to learn laser surgery to treat TTTS.

In 2007, she began observing Crombleholme and his team in Cincinnati. "I kept showing up every six weeks," she said. Eventually she got an Ohio medical license, and "they allowed me to operate."

Stephenson did all that while working fulltime at CMC, where she saw at least 30 patients in the last two years with twins affected by TTTS. She accompanied some of those patients to Cincinnati for laser surgery. And that's the offer she made to Wilkes.

"I was able to tell Halley exactly what to expect," Stephenson said. "I was able to tell her, 'You are in good hands.'"

Wilkes didn't like the idea of traveling, but she said OK.

"To me, there was no other way out," she said. "I wanted it to be over and wanted the girls to be safe."

On June 1, Stephenson performed the surgery at Cincinnati's Children's Hospital. Through a small incision in Wilkes' belly, the doctor inserted a camera that magnified the placenta and allowed her to identify the abnormal vessels.

Surgery in Cincinnati

Using laser energy, she cauterized the vessels and stopped the uneven blood flow, improving the balance of blood flow to each fetus.

The twins' health improved. After a week Wilkes and McAuliffe returned to Charlotte and awaited their births.

The babies arrived nine weeks early, by emergencyc-section, on Aug. 7. Stephenson had to deliver them so quickly, she was still wearing her street clothes and high heels.

Makayla, the "stuck twin," weighed 3 pounds, four ounces; Addison, the one who had been "doing somersaults" in all that extra fluid, weighed 3 pounds, 8 ounces.

For six weeks, the twins remained in intensive care at CMC's Levine Children's Hospital.

Last Friday, they returned to CMC to visit Stephenson for the first time.

"Look how big you are," the doctor said.

Makayla weighs 16 pounds, Addison 17. They looked exactly alike, plump, without much hair, wearing pink.

Wilkes and McAuliffe were happy to hear that other women can now have the surgery in Charlotte. Stephenson is as excited as a new parent, anticipating her first procedure at CMC.

"It was a dream," she said. "It feels a little bit unreal that it's actually happening."

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