The Private Pain of Infertility

THE PRIVATE PAIN OF INFERTILITY
By Gwen Davis
Published: December 06, 1987
New York Times Sunday Magazine

THE SMALL OFFICE IS CROWDED: 9 OR 10 women wait for their names to be called. After signing in, I stand by the desk and wait like the rest. The silence is communal – not uneasy. ”What stage of your cycle are you at?” I ask a woman about 35 – my age. Under other conditions this question would have prompted her to move away from me shaking her head, certain I was one of the many odd characters a large metropolitan city regularly serves up. But she knows what I’m talking about: we speak the same language. The women in this office are bound by one important condition: infertility. The inability to reproduce has driven all of us to this in vitro fertilization (I.V.F.) clinic.

The I.V.F. clinic represents the end of the road for most of the women here: each of us has a long history of disappointment verging on despair. Our pain is private; we keep it to ourselves. But as the days pass and our morning office appointments become routine, we talk. Some women compare the different I.V.F. clinics – the infertility circuit, I call it. But mostly, we talk numbers. Every woman seated here knows the value of certain numbers, especially the number of eggs retrieved. The more follicles an ovary can be stimulated to produce, the greater the possibility for more eggs and (in our minds) the greater the chances of pregnancy. The odds of giving birth for all of us were the same: about 20 percent. But percentages mean nothing: I know, like every woman who waits in an I.V.F. clinic, that anything less than 100 percent is failure.

FROM 1970 TO 1974, ABOUT 2.5 MILLION DAL-kon Shield intrauterine devices were sold to women in the United States. Soon after the Dalkon Shield came on the market, reports of pain, preg-nancy and miscarriage due to infection caused by its use began to surface. A.H. Robins, the manufacturer, suspended sales of the shield in 1974; that same year, the United States Food and Drug Administration investigated a number of these cases and the four deaths the shield was alleged to have caused. In 1984, Robins began a publicity campaign suggesting that women still using the Dalkon Shield should have it removed, and offering to pay medical expenses for the procedure. By that time there had been at least 20 deaths associated with it.(Box, page 120.) As a 19-year-old college student in 1971 I had every reason to trust my doctor and his suggestion that the Dalkon Shield was a safe, effective and convenient method of birth control. In the years that followed, I never made the connection between the means of birth control I’d chosen and the gynecological problems that afflicted me – not even as I lay in the hospital in 1978 with severe pelvic inflammatory disease, listening to the doctor whisper to my mother that I had a 40 percent chance of living after the emergency surgery and that brain damage could result from the prolonged high fever.

I didn’t die, but I was rendered infertile, a condition I viewed as temporary at the time. I wasn’t bitter because I knew that there was nothing that I couldn’t get if I worked hard enough for it. It wasn’t until three years later, when I read a newspaper story about the problems of the Dalkon Shield, that I began to wonder if its faults had anything to do with my problems. Since the shield was removed in 1978, I’d undergone numerous procedures and three ”corrective” surgeries that removed scar tissue and some tubal blockage but failed to correct my infertility. Nothing worked. Disillusionment came in stages, every month.

I grew up at the end of a time in which people still believed that a woman’s only purpose in life was to get married and have children. The fifth child in a family of five girls, I remember the admonition of my then-married mother to my older sisters: ”Find a good husband.” By the time I was in high school, her advice had changed. ”Get a good job,” she would say as she sipped her last cup of coffee before rushing off to work, a divorced mother and the sole provider for our family. I followed her advice, certain that when the time came I would have the three or four children I was supposed to have.

In 1983, my husband and I traded Los Angeles for the slower pace of rural upstate New York. The hardest part of the move was trying to explain to our friends why we were sacrificing secure careers to grow raspberries and teach school – I had gotten a job as a teacher of remedial reading at the local junior high. But we came of age in the 1960’s, and had never given up the dream of a simple country life. Having a family was a large part of that dream.

AN ARTICLE IN THE New York Times spoke of hope for infertile women in New York City and surrounding areas. Here was an in vitro fertilization program that offered better than a 1 in 10 chance of pregnancy. My husband called my attention to the article, but after four years of trying to conceive, I wasn’t looking for miracles. The article was taped on the edge of the shelf we use for mail; I saw it every day. One day I came very close to throwing it out, but as I walked to the trash can I reread the article and felt a small kindling of desire.

Just maybe, I thought as I wrote a request for more information. Several days later I received a large white envelope in the mail. The brochure was presented in the warm colors of lavender and rose. Inside were photographs of the founders of this I.V.F. program: physicians in the operating room, color artwork of the reproductive cycle, and the last picture -a slightly misty one of a pretty young mother breast-feeding her child. The brochure didn’t say whether she had achieved motherhood through I.V.F. – I assumed she had. That picture was worth more than any other illustration, explanatory paragraphs, or doctor’s endorsement. ”That could be me,” I thought.

I turned back to the beginning and began to read about the program. Everything was there: the acceptance procedure, the treatment cycle, the odds, and the costs. I focused on the odds first. According to this I.V.F. program the likely treatment outcomes were as follows:

Step 1 – If 25 women begin a total of 100 I.V.F. cycles; Step 2 – About 88 egg retrievals occur; Step 3 – About 74 embryo transfers occur; Step 4 – About 17 pregnancies begin; Step 5 – About 12 – ap-proximately 50 percent – of the women give birth to about 20 babies, considering twins and triplets. (The chances for multiple births are greater than average, due to multiple embryo transfer.) All I had to do was go through the procedure four times for about a 50 percent chance of success: the best average yet. The acceptance procedure was straightforward. I had been told previously by two gynecologists that I was a good candidate for I.V.F.: My infertility problem is centered around my fallopian tube (one fallopian and ovary had been removed in a ”corrective” surgery) and the fact that I ovulate had been established in various procedures. A good candidate for I.V.F. must demonstrate a regular ovulatory cycle with no hormonal deficiencies. I knew I would be accepted.

But then the old doubt and bitterness began to surface again: each procedure would cost approximately $5,000. That meant a total of $20,000 if I committed myself to four cycles and a 50 percent chance. Ironically, a large portion of the compensatory settlement I had received from A.H. Robins would be returned to the medical profession. I was troubled by questions I couldn’t answer: Was my desire for a baby – a desire that overwhelmed me in shopping malls, amusement parks and the infant-wear departments of stores – being exploited? How badly did I want a child?

Eight months passed before I made the decision. I thought about it all the time. The school day ended and I felt relief that my students weren’t my children. But I was haunted by the imperative of the biological time clock. Finally, I sent in my application.

Decisiveness did wonders for my self-esteem. Whether the decision proved good or bad made no difference. Once I had made it, I felt calm. I began jogging. I wanted to be in shape for this challenge. Every morning, every mile, I could feel determination build within me, the determination to exercise my biological right as a female of the species. Maybe this procedure would make things right again. Maybe, just maybe, the mother pictured in the brochure, breast-feeding her baby, could be me.

THE I.V.F. TREATMENT cycle begins with an initial consultation in which my husband and I are to meet with the medical director and the psychological and financial counselors. On the drive down, I’m conscious of the number of cars that have baby seats in the back -badges of parenthood.

The I.V.F. office is empty. We are shown a videotape of the program director explaining the I.V.F. procedure to us, after which we speak to the medical director, a tall, determined man. I feel comfortable as I settle back in my chair and notice the thick folder containing my medical history on the doctor’s desk. The doctor is courteous and answers our questions patiently; he’s candid about the success rate for this procedure. He explains how it works and just how many eggs I could be expected to produce from my two ovaries. I’m unsettled. I have only one ovary. That should be evident from my medical history, right in front of him.

”Ah – so it is. I must have overlooked it.”

We see the financial counselor next, then the nurse-practitioner, who describes the medication procedure. She is heartened by the program’s success stories -two women in their first cycle bearing twins. I am calm again. That could be me. We had been scheduled to see the staff psychologist, but we’re told she is on vacation.

Our next trip to the I.V.F. center is for my comprehensive physical. I inform the nurse right away that I have only one ovary. She smiles and points to my chart with the words ”ONE OVARY” written in the margin. After the physical, I’m issued the necessary medication and have a long conversation with the nurse-practitioner, who answers all my questions. This will work, I think on the way home.

Day 1 of my cycle is the first day of menstruation. My medication begins on day 3, when I take two clomiphene citrate tablets. This fertility drug starts the formation of follicles, or egg sacs. As I take my first medication, I suddenly recall a phrase: ”Hope till hope creates.” The origin of these words is lost to me now. I say them out loud. They fit. I have been warned of the possible side effects of the fertility drugs, but I feel fine. On day 3, I begin my self-injection of Pergonal, a drug used in conjunction with clomiphene citrate to whip the ovaries (in my case ovary) into overdrive. I begin packing for my trip back to the I.V.F. clinic to complete the remainder of my cycle under the supervision of the clinic staff. I feel fortunate, and see this painless beginning as a sign of success; at home I drift from room to room, excited by the thought that by this time next year I could be a mother.

By day 6, I still have no side effects from the medication. I drive to the I.V.F. clinic by myself and check into the local Hilton. I set up my computer, put my clothes away, arrange my toiletries, trying to create a comfortable atmosphere; this room will be my home for the next nine days. I stare out the window that overlooks the hotel entrance, haunted again by that mysterious line ”Hope till hope creates. . . .” Where is it from? I leaf through the copy of ”The Norton Anthology of English Literature” that I remembered to pack. The words are from Shelley’s ”Prometheus Unbound”: . . . to hope till Hope creates From its own wreck the thing it contemplates.

IT IS DAY 7, THE DAY I’m to receive my first blood test to monitor the rise in my estrogen level. This time, the I.V.F. office is crowded. My first blood test yields an estrogen level of 203. I’m told that any level over 100 on the first test is considered good.

On day 8, my estrogen level is 370 – a good rise again. Restless in my hotel room, I turn off my computer and go shopping. Things are going well.

On day 9, the euphoria begins to dissipate. My estrogen level is 399. I am told this signifies a flattening out – that my level should in fact be higher. I am instructed to take three, instead of two ampules of Pergonal, increasing the dosage to stimulate the production of estrogen. Back in my hotel room, I’m overcome with anxiety; I’m well aware of the possibility that I might have to drop out of the program and start the cycle again at a later date. In my nervousness, I break a container of Pergonal, but finally manage to give myself the injection. The dream I have that night is a recurring one: I’m at the bottom of a stairwell in the apartment building where I used to live in Venice, Calif. I am with two young girls, my children. We are familiar with the surroundings because we live here. I wonder why we’re huddled in this stairwell when the children should be out on the beach playing. As I look at them I’m overcome with love; my chest begins to throb. My two little girls begin to tremble as the building is rocked by waves and wind. I hug them to me. I begin to sing and my children are calmed. We open the door and find ourselves on a beach so beautiful and new that we shield our eyes from its radiance.

This dream of being in a stairwell with two small girls isn’t new; the fear is.

ON DAY 10, MY level is 458, a fair rise, but not what it should be. I can tell by the nurse-practitioner’s voice that she doesn’t feel I’m going to make it – a suspicion she confirms by hinting that maybe I should drop out of this cycle. Finally, she suggests that tomorrow I undergo an ultrasound procedure, in the hope that it will yield information regarding my ovary and its slow performance. There is a possibility that my ovary could be producing just one dominant follicle, in which case I would have to withdraw.

On day 11, the results of the ultrasound tell me there are five follicles, or sacs, containing the ripening eggs. Two of these follicles are in good shape, one is in questionable condition and the remainder are quite small in size. Now, the question is whether or not to continue. (Four eggs would give me the best chance for pregnancy.) If I drop out to recycle later there is no guarantee that my ovary will produce any more follicles. I spend the afternoon in the tyranny of irresolution. I lie for a while face down upon my bed. I close my eyes and rub my face back and forth across my arm. For a brief moment, I can feel the soft, sweet skin of a baby – my baby. Then its phantom warmth evaporates, and I’m stifled by this tactile fantasy – the fantasy of every woman who wants to have a child. Once again, it’s brought home to me: I might never give birth.

I go to the hotel pub for a ginger ale to relieve the anxiety that has been closing in with the four walls. It is a late ”happy hour,” and I forget my worries as I watch grown men and women thrash around on a postage-stamp size floor to the music of the Temptations, then Whitney Houston. I presume these people are from the office building across the street, and judging from the number of drinks consumed I figure they’re not too worried about tomorrow. If so, I envy them.

THE NEXT DAY, I RE-ceive a phone call informing me that my estrogen level has risen to 789 – a pretty good climb, considering my overworked ovary. The committee of nurses and doctors in the program suggests that I continue. If I decide to follow their advice, I am instructed to take the H.C.G. (human chorionic gonadotropin) injection tonight. This hormone prepares the mature follicles for ovulation and is to be taken 36 hours before egg retrieval.

This is it. In 36 hours I will be in the operating room for retrieval. Needless to say, I decide to go all the way. I call my husband to tell him to lock up the house and come down right away. He is happy. It’s not the most romantic way to make a baby, he says, but he wouldn’t miss it for the world. I say goodbye, then answer the knock at my door. Flowers from my mother in California.

It is day 12. My husband is here and we spend the evening feasting on Japanese food and Baskin Robbins pralines-n-cream. I am anxious beyond description but refuse to comfort myself with dreams of motherhood. I realize how precarious the whole thing is. What happens now is beyond anyone’s control.

On day 13, the procedure goes well. The eggs are retrieved by a ”blind,” nonsurgical technique whereby the pick-up needle is guided by ultrasound to the correct position to capture the egg via the vagina. Unlike laparoscopic retrieval, the ultrasound-guided technique requires neither general anesthetic nor an abdominal incision. I am given a sedative and sleep through the hour-and-30-minute procedure. Only two eggs are retrieved. All it takes is one, my husband assures me before he leaves my hospital room to produce his portion of this miracle.

On day 14, we visit Manhattan. At the phone booth in front of the American Craft Museum, I am told both eggs fertilized and I am scheduled for their transfer tomorrow morning at 10 o’clock. I’m stunned as I turn to my husband; no matter what happens, I say, we’ll have created something together. Everything has worked so far.

Day 15: the actual transfer of the embryos is somewhat like a pelvic exam. After my cervix has been swabbed, the doctor calls out to the embryologist: ”two minutes.” ”Sounds like the two-minute warning in football,” I say to my husband. The ”two-minute” call in embryo transfer indicates the amount of time the embryologist has to remove the embryos from the incubator and transfer them to the uterus. The embryologist enters with a tiny, strawlike tube at the end of a syringe that holds our two embryos – our girls, I think.

The doctor takes the syringe and inserts the tube through the cervix and into the uterus. I am asked if I feel the twinge of the tube against a uterine wall. I do. Then the doctor pushes the plunger at the end of the syringe, releasing the embryos and their fluid home of the last 24 hours into my uterus. I squeeze my husband’s hand. I am expected to lie perfectly still for the next two hours – a small price to pay. Finally, I have inside me all the elements it takes for pregnancy. Tomorrow is Thanksgiving: I give thanks.

TWO WEEKS HAVE passed since our embryos were transferred and I exulted in the possibility of pregnancy. There were books that explained exactly what I was feeling. It was happening.

It didn’t. The two embryos transferred the day before Thanksgiving failed to hold. Getting the pregnancy test on Monday was beside the point; I knew that Friday, in a restaurant, that I wasn’t pregnant. We didn’t stay. We shopped for groceries and went home.

IT HAS BEEN TWO weeks since I’ve written the above. I’ve gained 10 pounds and remain haunted by the idea that I may be suffering a mental breakdown. I believe nothing. I trust nothing. I’m numbed by the pain, amazed that I’m so fragile. I never thought I could be emotionally crippled by anything. I want to be a mother, plain and simple. What’s just as plain and simple, though more difficult to accept, is the fact that I will never be a mother. I can’t bring myself to test the I.V.F. clinic’s claim that my chances of getting pregnant will improve with each cycle. I can’t face again the possibility of failure. It’s a matter of self-preservation. It’s a matter of freedom – freedom from want.

Through any window of my home I can see an expanse of lawn, a lawn on which I once thought my children would play. I realize now that I live too much in the future; in order to restore my sanity, I had better begin living in the present. Easier said than done: I need some goal, some idea of what I can expect in the future. Something to hope for.

Am I still bitter? At times. But I’ve come to realize that my rage seems less rooted in the fact that I’ll never bear a child than in the fact that I’ve been robbed of choice. Virginia Woolf referred to her sister Vanessa as ”the real woman because she has children.” I compare myself to my friends who are mothers and consider the possibility that one’s point of view is determined by whether or not one is a mother.

”If you had it to do all over again, would you have children?” I put this question to some of my friends. The responses were mixed. ”You don’t have babies to boost your self-esteem,” said one. Another confessed that she’d had children in order to be loved ”unconditionally.” The response I cling to now came from a friend who has experienced the entire range of parental emotions. Children, she said, are only ”one dimension” in a woman’s life. One dimension, not all.

LAST FEBRUARY, I was convinced there were no happy endings in life. The two previous months had been nearly too painful to bear. Then I discovered I was pregnant. The euphoria lasted seven weeks before the pregnancy was determined to be ectopic. Surgeons removed the misplanted embryo, along with a good portion of my remaining fallopian tube, rendering me permanently infertile. Lying in my hospital bed, I tried in vain to stop my tears and the sound of the newborn babies crying in the rooms on either side of mine.

Eight months later, nearly a year to the day since I started the I.V.F. procedure, we received a phone call from the adoption agency we applied to last summer. They have a newborn baby for us. It’s a boy.