With One Voice

In a tidy bedroom office high in the hills of Laguna Beach, Candace Hurley takes a distressing phone call from Texas. A woman, five months pregnant, has become a quadriplegic after a car accident.

Miraculously, the fetus lived. But to get through her now complicated pregnancy, the mother--not even sure she wants to go on living--would benefit from counseling of the sort provided by Sidelines, a national support group for high-risk pregnant women.

As Sidelines’ founder, Hurley, 42, has helped match pregnant women with any of 5,000 volunteer phone counselors who have suffered through a variety of risky pregnancies. In this case, however, Hurley tells her Texas coordinator that she doubts a match can be found.

Then, putting her on hold, Hurley takes an incoming call from her Ohio coordinator, to whom she mentions the Texas problem.

What Hurley hears proves to her once again the value of nationwide networking: “She said she had just finished training a volunteer who’s a quadriplegic. I said, ‘I’ll take her!’ ”

Three months later, after almost daily phone calls between the Texas and Ohio women, a healthy baby is born. The new mother credits her phone buddy with helping her make it through.

Few of Sidelines’ success stories are so dramatic. But for the 18,000 women who have been coached through difficult pregnancies by the group’s volunteers, the benefits are just as real.

These women were among the 200,000 each year in the United States whose potential for pre-term delivery makes at least part of their pregnancy an ordeal of bed rest and the accompanying loneliness, loss of muscle tone, seesawing emotions and intrusive medical tests.

Causes of pre-term labor--the primary reason bed rest is ordered--are varied and include such things as complications from a multiple pregnancy, diabetes and abdominal surgery. Many women must treat themselves as if they are critically ill even though they may not feel sick at all.

In such cases, Hurley said, bed rest is anything but a chance for some peaceful R & R; it’s enough to make you climb the bedroom walls.

Hurley, an energetic mother of two, was confined to half of a queen-size bed for a total of six months during back-to-back pregnancies in the late 1980s. That gave her more than enough time to ponder her long list of do’s and don’ts.

She wasn’t to lie on her back or stomach. Lying on the left side is best for blood circulation to the fetus.

She could watch only G- or PG-rated videos. Violent films--indeed, stimulation of any type--could trigger the contractions that could stress her tissue-thin cervix and cause a dangerously premature birth.

Forget about sex. And showers? They were to be limited to two minutes, once every two days.

During Hurley’s months of bed rest, husband Brian would make her breakfast, pack her a lunch in an ice chest and empty the bedpan before leaving for work. After that, she was on her own. Using a device hooked up via modem to St. Joseph Hospital in Orange, she would monitor her occasional uterine contractions and take appropriate medications to control them.

But thank God for telephones.

Beyond the expertise of her doctor, Hurley credits a single person with helping her stay in bed. And it was someone she knew only as an encouraging voice on the phone.

This phone buddy, referred by Hurley’s obstetrician, had one supreme qualification: She had given birth to a healthy baby after her own complicated pregnancy.

Hurley recalled the first thing Kathleen Kronk told her: “She said, ‘I know just what you’re going through right now. I went through 16 weeks of bed rest myself. And can you hear that baby crying? That’s my son.’ ”

To Hurley, the sound of baby Kronk, squalling in the background of their telephone calls, was her hope and motivation, living proof that getting through her ordeal was possible.

And it was true: Kelan Hurley is now 8, and his brother, Braeden, is 7. Both are healthy.

“Kathleen called every day,” Hurley said. “I’d never met her, but I felt like she was my best friend in the world.”

Later, Hurley was to reciprocate with Kronk, talking her through another risky gestation.

From these experiences, Sidelines was born.

As executive director of the 4-year-old group, Hurley has testified five times at Food and Drug Administration hearings, most recently on behalf of keeping home uterine monitors available to bedridden women. In 1994, Sidelines was acknowledged by President Clinton for its efforts in combating infant mortality. Its annual budget of $220,000 is funded through corporate and individual donations.

Hurley got the idea for the network after her second pregnancy, when word-of-mouth put her in touch with several local mothers-to-be.

“I became counselor to people I’d met over the phone, who’d heard about my pregnancies,” she said. “I realized there was no national support group for women having complicated pregnancies. At such a crisis time, you need hope and information that can only come from somebody who’s been there: other high-risk moms.”

She found start-up money from Bob Byrnes of Matria, a medical device manufacturer in Santa Ana, and went to work calling hospitals.

“For the next six months I didn’t get a lot of sleep. I’d get up at 4 a.m. to make calls to the East Coast, and it came together so quickly,” she said.

“It wasn’t my talent, it was that there was such an enormous need. It just took off, went crazy. I was sitting at my desk reining this thing in. Every time I talked to a hospital or nursing organization, they said, ‘That’s exactly what we need.’ ”

Although Sidelines does not provide medical advice, the group’s board of advisors includes doctors and nurses who agree that aggressive patient education and screening of symptoms help bring fetuses closer to term and reduce time spent in expensive neonatal intensive-care units.

In that mission, Sidelines plays an important role, said Dr. Frederick Zuspan, editor in chief of the American Journal of Obstetrics and Gynecology: “Candace’s work is very impressive; out of her hazards [in her pregnancy] came a lot of good. A lot of people have crises, but some, instead of accepting them as terrible, make something good out of it.”

The network’s name came to Hurley because bedridden women often feel they are isolated and on the sidelines of life.

“Some women say they’re prisoners of pregnancy,” Hurley said.

“In my first pregnancy I felt terror. I never felt relaxed, so I needed reassurance. Sometimes I felt resentful that the rest of the world was going on. Sometimes friends would take Brian out to dinner, saying he needed a break. But what about me? I was left alone.

“I tried to be upbeat, but I felt blue and hopeless, exhausted, sore in my hips and shoulders, and speeding because of the medication I was on.”

Because her second pregnancy came immediately after her first, Hurley had a new problem: Physically mothering Kelan, who was then 7 months old, would set off contractions. She could touch him only when their baby sitter brought him to her when he was asleep.

“I felt tremendous guilt; I felt I was ignoring this baby I’d waited so long for,” Hurley said. “Anything can tip the scale, you’re so precarious. Once, he chipped the front of his tooth on his bottle, right in front of me. I started crying and went into contractions. But my mother told me to snap out of it: ‘Don’t sacrifice the one inside you!’ ”

Hurley’s months in bed were not without their lighter moments, though, including a number of unusual bedroom visits.

“I had so many men crawling in and out of my window, because I couldn’t get up and answer the door. I got to know my Sparkletts man because I had to drink a lot of water as part of my treatment. He’d come to the window and say, ‘Hydration man!’ and crawl through with my water.

“My mailman would also come in and visit with me. It was great, because all these people were keeping my spirits up. Brian was working long hours. A lot of men work a lot during [their wives’ bed rest]. Some of it has to do with needed income, because the wife is not working. But it’s also stressful for the husband, so they work.”

For Brian Hurley, 41, the memory of those months returned in a rush a few months ago, when his wife’s work with Sidelines was honored with a Heroes of the Heart award from Children’s Hospital of Orange County.

“The banquet brought back all the anxiety and feeling that had been pent up, and I realized I’d never forget what we went through,” he said. “I kind of lost it that night.

“The bed rest was a real emotional ride for both of us. Men typically sense that we have to make things seem normal even when they’re not. I don’t really get upset easily, but the emotional side . . . you’d get to point that you wanted to see the light at the end of the tunnel so bad . . . you’d snap and start crying.”

*

A San Bernardino native and the oldest of three sisters, Hurley moved to Orange County in 1979 after getting a master’s degree in speech pathology from the University of Redlands. She began working in that field for the Irvine Unified School District.

After marrying in 1980 and trying to get pregnant, she found that earlier abdominal surgeries were probably contributing to fertility problems. She and her husband tried various treatments over five years, and when conception finally occurred in 1985, the happy couple spent $400 in long-distance calls alerting friends and family, including Brian Hurley’s nine siblings.

But seven weeks later--ironically, the day before Mother’s Day--Hurley miscarried.

“At that point, it was ‘How low can you go?’ ” Hurley recalled. “I had 10 pregnant girlfriends at that time--I was the one who started the trend among them--but now I was the one without a baby. It was hard to be sensitive when they were into their baby thing and I was so lost.”

With the help of their fertility specialist, Dr. Richard Marrs of Los Angeles, Hurley soon became pregnant again. All went well for 20 weeks, when Hurley felt a subtle “stretching” and called her perinatologist, Dr. Peter Anzaldo of Orange.

“He took a look and said I was 80% effaced, meaning 80% of my cervix had thinned out. He put a monitor on me and found I was contracting every five minutes for 100 seconds. That is like somebody in complete labor,” she said. “He figured I would have delivered in 24 hours if I hadn’t called him.”

And she very well might not have called.

“When you’re pregnant, people tend to say, ‘Oh, don’t worry, just enjoy your pregnancy.’ I got a lot of bad advice like that, but I decided to [call], and had I waited, I would’ve lost the baby.”

Zuspan, of Ohio State University and considered a founder of the field of maternal fetal medicine, said education of health care workers--nurses, residents, receptionists--is ongoing. Just because a patient’s contractions are pain-free does not mean she is OK, and she shouldn’t be told so over the phone, he said. “I always say to patients that if you don’t feel exactly correct, if you don’t feel perfectly normal, call your obstetrician.”

Another problem, Hurley said, are patients who are reluctant to question their doctors--even when they have doubts.

“At Sidelines we encourage moms to get second opinions, but it’s hard because many women don’t want to go against their physicians; they feel it’s insulting. But a good physician welcomes a second opinion.

“We tell these moms, if it’s your car, you wouldn’t think twice about seeking another opinion from a mechanic, right? Well, you’re not a Ford anymore, you’re a Ferrari. You need a mechanic who works on Ferraris.”

Dr. Joan Hodgman, who trains perinatal residents at L.A. County-USC Medical Center, said women need to be assertive: “Patients have to learn to ask questions, and they have to be free to challenge physicians or get second opinions, or switch. If your physician gets hot under the collar about this, that’s a good indication you should find somebody else.”

Sidelines volunteers are trained not only to help a woman deal with her emotions but also to keep an eye out for symptoms of physical trouble. Often, Hurley said, the women tell their volunteers things they don’t tell their doctors or nurses. In such cases, volunteers urge the women to inform their obstetricians.

“It’s not our intent to take over from the medical people,” Hurley said. “We help people comply with what the physicians ask them to do.”

Ironically, Hurley’s own pre-term labors might have been caused by a drug her mother had taken decades earlier to avoid miscarriage: diethylstilbestrol, or DES. Hurley’s uterine contractions led to what is known as an incompetent cervix (“a rude term,” she said), one too thin to support a fetus’ weight in the second and third trimesters.

In addition to complete bed rest, her doctor began an in-home monitoring of uterine contractions.

“When he told me I was in pre-term labor, I didn’t cry; I just lay on the table. I was convinced the pregnancy would be a failure. I was good at failing,” she said.

Then Anzaldo turned Hurley’s life around by putting her in touch with Kronk, the friendly voice on the phone.

*

Knowing what she does about the pitfalls of pregnancy and how they can be avoided, Hurley is a mixture of optimism and pensiveness. She is articulate, displays an earnest and growing knowledge of obstetrics, and is quick with anecdotes to support the cause.

With Buddy, her Jack Russell terrier, to keep her company, Hurley works out of her home, where she gets about two dozen calls a day from insurance companies, nurses and expectant mothers. She is also compiling material for the second issue of Sidelines’ magazine--called Left Side Lines, in acknowledgment of the side bedridden women are told to rest on--which she hopes to publish in August.

Day to day, Hurley keeps in touch with her chapter coordinators, all of whom work out of offices in their homes. She also helps coordinators match high-risk mothers with volunteers who had similar pregnancy experiences.

The organization supports volunteers, including Hurley, by paying for the phone calls that are so key to their work and by giving chapter leaders a small stipend to cover office costs.

At any one time, the Orange County chapter of Sidelines gives support to 25 to 30 women in high-risk pregnancies; the Los Angeles chapter usually supports 45 to 50.

Usually, volunteers are local women who can make some personal visits if the mother wants. But occasionally, Sidelines coordinators search far afield to find a matching volunteer.

Kellie Odom, 29, of Capistrano Beach suffered a premature rupture of her amniotic sac 16 weeks into her pregnancy, an event that usually kills the fetus. But, happily, Odom was still carrying her fetus eight weeks later. To coach her, Orange County Sidelines chapter coordinator Linda Scott found a volunteer in Atlanta who had successfully given birth after a similar problem.

With Sidelines’ growth from 24 chapters in 1992 to 35 today, the list of volunteers includes women who underwent highly unusual pregnancies; many are still waiting to be matched with a patient. For pregnancies that end in miscarriage or a baby’s death, volunteers are available for grief counseling.

But it is the success stories that stick in the mind, said Hurley: “One of my very first patients already had seven children when she had to be put on complete bed rest. Her husband was going out of his mind. At one point she threatened, ‘I’m going to go to Palm Springs. I’ve got to get out of this bed.’

“Had she done that, of course, the minute she’d have gotten in the car she would’ve lost her baby. I threatened her that I’d come out and pop her tires if she tried. I talked her down. And now her baby’s fine.

“So often the women say, ‘You don’t know how I feel!’ But we say, ‘Yes we do, we felt exactly that way. Here’s the prize, here’s my healthy baby. Just make it one more day.’ ”

* To contact Sidelines, call (714) 497-2265 in Orange County, (310) 691-9195 for Los Angeles and San Diego counties, and (805) 967-7143 for Santa Barbara and counties north.

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Candace Hurley

Age: 42.

Background: Born in San Bernardino, lives in Laguna Beach. Married to Brian Hurley; two sons, Kelan and Braeden.

Interests: Cycling, painting pottery, sailing.

On how not to help a bedridden mom: “People need to keep it simple. Once, a woman came over and insisted she would cook Cornish game hens. I kept saying, ‘Oh, let’s just get pizza.’ She found out the hens were frozen, and she didn’t know how to work my oven, so it was off when we thought it was on. I was so stressed out I went into contractions.”

On Sidelines’ goals: “We want to work more with the military to make it easier on their moms. So often husbands are sent someplace while their wives are on bed rest, and often the military will ship her 600 miles away to a military hospital rather than pay for a child-care worker to come to her house.”

On regional differences in attitude: “In some areas of the country, if you say ‘support group,’ it’s not taken so well. Women think we’re saying there’s something wrong with them, or that it’s a ‘California’ thing. . . . So in some parts of the country we call ourselves phone buddies.”