Johnson City Press Wednesday, November 26, 2014

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'The Waiting Game': Expecting mother of twins deals with rare, potentially fatal condition

August 9th, 2014 10:59 pm by Max Hrenda

'The Waiting Game': Expecting mother of twins deals with rare, potentially fatal condition

April Helton looks at a photo of one of her twins' hands at her apartment in late July. She has since been moved to Johnson City Medical Center, where she will remain for the duration of her pregnancy. (Max Hrenda/Johnson City Press)

After spending most of her adult life yearning for motherhood, earlier this year, April Helton’s wish came true, twofold, when she learned she was pregnant with identical twin boys.

More than three months into her pregnancy, however, Helton’s doctors discovered that her twins were suffering from a rare condition that threatened the lives of both her unborn babies.

“One of the babies was filling up with all this fluid, and the other baby was extremely small,” she said.

ETSU Physicians and Associates Dr. George Davis, a doctor of obstetrics and gynecology with a specialty in fetal care, confirmed in mid-June that Helton’s babies were suffering from twin-to-twin transfusion syndrome, a rare condition that affects some identical twin pregnancies.

“When you have identical twins that share the same placenta, the blood vessels of one baby can have connections with the blood vessels of the other baby through the placenta,” Davis said. “In that situation, one baby can start pumping its blood into its twin. It’s what we call twin-to-twin transfusion.”

According to the American Journal of Obstetrics and Gynecology, TTTS affects anywhere from 8 to 10 percent of twin pregnancies that are monochorionic diamniotic — the term used when twins share a placenta during gestation. Data collected by the Royal College of Obstetrics and Gynecology in England indicates that, of those monochorionic pregnancies, 10 to 15 percent are affected by TTTS. Despite the condition’s rarity, Davis said he encounters it with some frequency.

“It’s relatively uncommon, but it’s something we still see not that uncommonly,” he said.

For the first several weeks of Helton’s pregnancy, however, she didn’t know there was a problem.

“I think I started off normally — terrified and excited at the same time,” she said.

A week after she learned she was pregnant, Helton then learned she was pregnant with twins. While that news added to her excitement, she said, her doctors cautioned that twin pregnancies can be problematic.

“My OB came in and explained that twins can be complicated,” she said. “He said, ‘We’ll just see how this progresses.’ ”

By mid-June, however, the progression had taken a dire turn.

“When I went back for my scheduled appointment ... that was when they realized there was a problem,” she said. “That’s when he referred me to another doctor in Johnson City, to kind of get an opinion about what was happening.”

While waiting for that second opinion, Helton said she grappled with the news that her babies were potentially in danger.

“I felt a little overwhelmed,” Helton said. “At that point, I’m just trying to let it soak in and trying to wrap my mind around it.”

The news did not improve, however, after her appointment with Davis, her second opinion. After his examination, she said, Davis told her she needed to go to a hospital in Cincinnati immediately to ensure her babies’ safety.

“(He said) if the surgery doesn’t happen basically immediately, the chances of them making it ... it wasn’t going to happen,” she said. “This is obviously much, much worse than I ever anticipated. I didn’t expect to go into the second opinion and have it be a life-or-death situation.”

Davis referred Helton to the Fetal Care Center of Cincinnati for a procedure that is known as selective fetoscopic laser photocoagulation. In SFLP procedures, surgeons make a small cut in the mother’s abdomen, and after using a metal tube as a conduit, look at the blood vessel connections on the surface of the placenta using a fetoscope, or medical telescope. Any abnormal blood vessels will be sealed using the laser, thereby disconnecting them from the placenta.

At that time, however, Helton didn’t know any of that. All she knew was that her twins were in trouble, and she needed to travel more than 300 miles to help them.

“Literally that day, I left the doctor’s office, came home, packed my bags and drove to Cincinnati,” she said. “It was very much like I was on a roller coaster. I didn’t know how I was supposed to be feeling, but I didn’t have time to worry about it, because I had to do it.”

Helton arrived in Cincinnati around midnight June 18. Davis had already called the hospital to arrange her procedure, so she was admitted without much delay. For the next eight hours, she was questioned, poked and prodded by the center’s staff, all while operating on no sleep since the previous day. One of the center’s nurses joked with her about how she hadn’t been left alone, but added that she might be able to sleep for an hour or two before her procedure.

“It wasn’t even, I would say, 15 or 20 minutes later, they came in to take me to surgery,” Helton said. “She (the nurse) was like, ‘I’m so sorry!’ By the time I went in for the actual surgery, I had already been awake for 24 hours. It was exhausting.”

Relief for that exhaustion would not come soon, she would learn. Her surgeons told her they wanted her to be aware of what was happening, so she needed to be awake.

“They used a numbing agent, and they gave me something to relax me so I wasn’t all over the place,” she said. “I think they told me the whole thing lasted 30 to 45 minutes before I was wheeled to recovery.”

After she was placed in recovery, Helton seized the opportunity and slept for the first time in more than a day. After she awoke, and after her subsequent recovery, her doctors advised her to rent a hotel room and stay in Cincinnati for the next week for observation.

Despite spending a week under the watchful eye of one of the country’s foremost fetal care facilities, Helton’s time in and around hospitals would not conclude there.

“They told me, even with the surgery, this issue would take weeks to resolve itself,” she said.

Helton visited Davis every week for the remainder of June and all of July to monitor her pregnancy, though, throughout that time, she was advised to stay home on bed rest. Apart from a premature rupture of membranes — meaning that her water broke — Helton and her twins remained in good health.

Then, on Aug. 2, she returned to Johnson City Medical Center when more complications arose.

“I’m having contractions day and night; it’s really painful,” she said. “I was actually supposed to come back Monday, but I came back early because I was starting to hurt real bad and bleed.”

Helton knew she would return to JCMC at around this time; her doctors had previously told her that, starting Aug. 4, she would need to stay at the hospital for observation and care until her due date, Nov. 27, though she said she would, in all likelihood, deliver early.

“We’re just don’t know how early,” she said. “Now it’s just the waiting game.”

Waiting with her, of course, are her two boys, who, according to Helton, have remained stable since their time in Cincinnati.

“The babies seem to be hanging in there,” she said. “They’re still in there fighting, too.”

In addition to fighting medical challenges, however, Helton also faces financial ones, as well. While her insurance company agreed to cover the cost of her hospitalization after her 24th week of pregnancy, other costs — like rent and utility payments — are also in need of attention. After Helton’s trip to Cincinnati, when she was advised to stay off her feet and at home, one of her friends, Samara Litvack, realized the potentially dire financial straits.

“She has already gone through a lot of her savings paying bills in the meantime,” Litvack said. “She needs stuff for when the babies get here: bottles, diapers, the whole nine yards. But she doesn’t have that disposable income to start buying these things.”

To help with those costs, Litvack suggested creating a fundraiser for Helton on the free charitable donation website youcaring.com. Helton said that after Litvack told her she was going to create the site, she doubted it would receive much attention.

“I know it sounds pessimistic, but I just didn’t think people would really care,” Helton said. “Everybody has a lot going on, times are hard for a lot of people, and there’s always a million things going on for people every day. She said ‘worst-case scenario, nothing comes from it ... and we didn’t lose anything. But it’s worth a try.’ ”

Litvack set the website’s initial fundraising goal at $2,000. In less than a day, almost half of that total had been reached after donations from various sources.

“It has been a lot of friends and acquaintances, but a lot of people who April doesn’t know,” Litvack said. “A lot of people have donated anonymously. It has been amazing to watch the support come in, both financially and emotionally.”

As of Saturday afternoon, the website has brought in a total of $2,735. Additionally, Litvack said she raised $2,000 through her own efforts.

While she said she appreciated the money, Helton added she was overwhelmed by the amount of financial, spiritual and emotional support that was wrought by Litvack’s website.

“I was brought to tears; this was unbelievable,” she said. “Whether it was prayers or thoughts ... it was one less thing for me to have to stress about. It’s just very, very unreal.

“I’m so extremely grateful.”

Anyone interested in offering Helton money, support or well-wishes — or to learn more details about her pregnancy — can do so by visiting http://bit.ly/1A3r6Ya online.

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