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A baby at all costs



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By Diana Reynolds Roome

Pregnancy happens easily for some, but for others it can be a nightmarish quest that eats up their resources -- financial, physical and emotional.

One Mountain View woman took her desire for a baby to lengths that few would dare to go to, after finding a fertility specialist whose determination matched her own. She and renowned reproductive surgeon Dr. Camran Nezhat eventually proved that knowledge, world-class medical skill, and a refusal to give up can achieve miracles -- but not without a price.

As "Sharon Bell" discovered, the pain of childlessness starts long before the ordeal of fertility treatment begins. (Her name has been changed because she wished to remain anonymous.)

"It's so difficult and so emotionally alienating," said Bell, who was 33 when she started trying for a family. "When you can accomplish anything, then try to accomplish having a baby and it doesn't happen, it's devastating. Women my age put their careers first, and put off marriage until their mid-30s, not realizing that by then their reproductive resources have taken a 40 percent discount. So many women feel they've failed, having to go through the process of infertility treatments to get pregnant."

Around 10 percent of women who experience difficulties conceiving choose in vitro fertilization (IVF), whereby some of their own eggs are mixed with their husband's sperm and re-injected into the uterus. The process is not only costly (between $10,000 and $15,000 a cycle, and not usually covered by insurance), but can be painful, and the drugs necessary to boost hormone levels can cause unpleasant and occasionally dangerous side effects.

"By the time people get to IVF, they're often desperate and going through the last option," said Bell, who already knew she would have difficulty conceiving naturally due to earlier surgery and damage to her fallopian tubes. She and her husband had educated themselves on alternatives and were prepared to take this route to parenthood. Bell, who had worked in sales in Silicon Valley, had medical coverage that included fertility treatments, and was confident that IVF would result in a baby soon enough.

She did not imagine that this would be the beginning of a long and difficult road that would challenge and almost destroy several of her close relationships rather than creating a new one.

The first diagnostic test performed prior to beginning an IVF cycle at the Stanford REI (Reproductive Endocrinology and Infertility) Clinic was a routine hysteroscopy to assess the health of Bell's uterus. What the doctor saw was not encouraging. Her womb was filled with scar tissue from earlier surgeries, as well as some endometriosis, a disease of the uterine lining which makes it difficult for a fertilized embryo to embed and grow.

The IVF was immediately cancelled, and Bell went home. It was the baby boom summer of 2002, nine months after Sept. 11.

"I could see nothing but babies, strollers, and pregnant women," Bell recalls. "I didn't know whether I could conceive and carry a baby ever at all."

Bell's endocrinologist put her in touch with Dr. Nezhat, fertility specialist and President of the Society of Laparoendoscopic Surgeons at Stanford University Medical Center. A pioneer in minimally invasive surgical techniques, he has been described as "the father of laparoscopic surgery", and many of the most difficult cases are referred to him.

"Dr. Nezhat told me, 'If we have to do surgery three times, we'll get you a baby," recalls Bell, who felt equally determined. "I knew he would stop at nothing."

The surgery appeared to be a success, and afterwards Bell and her husband hoped for a quick pregnancy. The first attempt at IVF nearly took, but did not persist, resulting in an early miscarriage. They tried again, and then another time, with no results.

"After three failed cycles, I went in really angry and asked Dr. Nezhat to perform the surgery again," said Bell. Instead, he encouraged her to get a second opinion and another IVF cycle. Bell got a second opinion from a specialist who advised her to give up the struggle and try surrogacy. But she had invested too much time to give up on her dream of having her own baby.

Then the fourth cycle failed. At the fifth try, the endocrinologist transferred eight embryos (instead of the usual four from which it is hoped that one or two eggs will implant). "At that point, I was beside myself," Bell said. "The injections were wreaking emotional havoc, with high levels of hormones. Also, the egg retrievals were terribly painful, with needles through the vaginal wall, and it takes a couple of weeks to recover every time. Most people quit at the third cycle. They start looking at adoption or using a surrogate, or simply being childless."

Bell went back to Dr. Nezhat and challenged him. "You said you would do surgery how ever many times necessary," she reminded him. "But if you tell me my uterus will not carry a baby, I will move on."

Dr. Nezhat's reply was memorable. He told Bell he would create a new surgery to reconstruct her uterus. He also warned her of the risks: He would remove every last vestige of scar tissue, but the procedure could rupture her uterus.

"I said, 'Let's do it,'" said Bell, and scheduled surgery for two weeks ahead. "I thought if I lose my uterus I've lost nothing. I felt the risk was worth it."

Nezhat thought so too, partly because of his confidence in his own ability, and partly because of who Bell was. "She and her husband were committed," he said, adding that if the patient is informed, educated and the risks are explained, he is willing to push boundaries.

The surgery went better than anyone dared to hope, though it took Bell six weeks to fully recover. She then went in for her sixth IVF cycle -- which failed. At this point, she decided to research surrogates, but the process (which involves implanting an embryo into another woman's uterus, and costs $60,000 to $80,000) depressed Bell so much that she abandoned the search.

Meanwhile, Dr. Nezhat suggested she try IVF again. By this time, Bell's husband had had enough. He'd stopped giving her the injections necessary to keep hormone levels high.

"It was strained between us," recalled Bell. "It was either going to bring us closer together or tear us apart." So Bell learned to give herself the hormone shots.

"By then I was closer to the nurses than to my own family, but even they started to think I was crazy. And I was sickened by the whole thing. But with IVF there's always that little glimmer of hope."

On Dec. 23, 2003, Bell went for a blood test and then went Christmas shopping -- something she'd barely thought about. By this time, the situation was so tense that she wasn't speaking to her family. As she stood in a changing room, she got a call from a nurse who said she was pregnant.

"That was our Christmas present," said Bell.

The pregnancy was difficult, with bleeding, months of bed rest, and some near-miscarriages. Bell used a wheelchair to shop for a crib. The baby was delivered prematurely and went into neonatal intensive care.

"We weren't released from the grips of medicine and able to live happily ever after," said Bell. But today, her little boy is a thriving and determined toddler.

Within a year, Bell had surgery again, went through IVF again (for the eighth time) and is once again pregnant -- against all odds.

Dr. Nezhat, meanwhile, believes that the likelihood of having a child can be increased by treating endometriosis. This month the journal Fertility and Sterility<$> published his research study, suggesting that women who fail to conceive through IVF can be helped by being treated for endometriosis, a condition that affects 50 percent of infertile women. The 29 patients in his study had gone through multiple IVF attempts, all of which failed. When endometriosis was subsequently diagnosed and treated, 22 of the women conceived -- 13 of them naturally and 9 through IVF.

"Among women with unexplained infertility, the majority have endometriosis -- in our practice, it's 80 percent to 85 percent," said Nezhat. "If a couple is told everything is OK -- the husband, tubes, ovaries -- and still doesn't get pregnant, this could be the cause."

INFORMATION:

Center for Special Minimally Invasive Surgery

400 Welch Road, Ste. 403, Palo Alto

(650) 327-8778

www.nezhat.org

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