Beth's Miracle

The doctor who told me to have a hysterectomy peered at me from the edges of my medical file. It was December and his office was unusually cold. Two weeks earlier, I had had a hysterosalpingogram, (HSG) which is a radiological exam where fluoroscopic dye is injected into the uterus to check for blocked tubes and other reproductive abnormalities. On rare occasions, very rarely, will it detect other blockages in the uterus. In my case, the dye could not pass beyond my cervix because scar tissue had occluded my womb from the top by my fallopian tubes down to my cervix. The medical resident performing the exam tried to inflate a balloon in my uterus, just past the top of my cervix as is standard procedure. This tiny balloon usually creates a seal so that dye can flow unobstructed up to a woman’s fallopian tubes showing a nice normal uterine structure. In my case, the balloon inflated in my cervix forcibly dilating it and feeling much like early labor. This happened because the adhesions in my uterus were so thick that nothing could penetrate them, not even a tiny balloon on the end of a probe.

At the time, I recall thinking that resident was doing something wrong and must not have had enough experience to perform the exam. After all, I was at a top teaching hospital where procedures were overseen by well-respected doctors. The nurse that day had even taken great pains to explain to me that what had happened was likely a minor complication in procedure and that I should ask for a second exam with the physician in charge or a reproductive specialist. I left the exam mildly concerned but completely ignorant to the severity of my condition.

I found out that I had Asherman’s Syndrome. The chances for getting pregnant, essentially zero. There was no way for the dye to go into my uterus because in reality, I had no uterus. I had a hulking mass of stringy tissue sewing the thing together like a folded over piece of pizza.

The doctor said to me, “in some cases, we can cut the adhesions but in your condition, there is no way to know where the planes of the uterus are. If we begin cutting, we might perforate your uterus or cut the veins within the tissue.” He went on to explain that cases like mine usually require a hysterectomy because of the potential for endometriosis where the uterine lining begins to grow outside the uterus, causes pain, and sometimes, serious internal bleeding. It seemed I sat there for ten minutes without saying a word.

…We did not want it to end in that room, with that doctor. We wanted another child and I did not believe that such a heartless doctor could end our dreams without any discussion. I began looking for more information because with information comes options. I was determined to find a way out of the Asherman’s corner. There had always been an unexplainable feeling that another baby was waiting to join our family but now that feeling was growing stronger and more insistent. I cannot tell you if that insistence was my own determination raising the ante or if in fact, our baby’s voice getting stronger and bolder. All I know is that this baby was persistent and his or her presence was gaining in strength.

Whether the presence I felt came from God or some other dimension of consciousness, I cannot say. Where ever it came from, it gave me motivation but no answers. I had to inform myself, solve the problem and build the belief that I would be successful in conceiving a child. By this point, I was motivated to the point of obsession (many would-be mothers can relate to this) and soon drowned myself in information about Asherman’s Syndrome, hoping to find a way to overcome this obstacle. Shortly after my second diagnosis, I found a support group on the Internet of women who had Asherman’s Syndrome (www.ashermans.org). Some of those women were successfully operated on to remove the scar tissue and had gone on to have children of their own. Many women, like me, were reeling from learning of their diagnosis. Now we aired our sorrows in an online Yahoo group and shared stories, grief, and nuggets of valuable information and encouragement that might help us get pregnant.

The group had been founded by a woman in Cyprus who lost her twins in 1999. Poly built a website and began generously and tirelessly supporting other women with the condition. Her international support group established connections across continents to help women deal with their diagnoses and, hopefully, find specialists to open up their damaged uteri. Through her efforts, women who had undergone successful surgeries compiled a list of doctors, which at the time included 26 doctors who could perform hysteroscopic surgery and had done so successfully. There were two A list doctors in California and as soon as I could, I scheduled an appointment to meet one of them who was a few hours away from our home—a lucky turn that would prove helpful in future months.

When the official diagnosis and report from the hospital made its way to my current obstetrician, she told me that my chances to overcome Asherman’s were nil and my chances of conceiving were even worse. She told me I was too old and there was no chance that my uterus would recover enough to grow a lining even if the scar tissue could be safely removed. She was doomsayer number two. The voice in my head told me that she was ill-informed.

In my typically optimistic manner that was growing more resolute each day, I stopped seeing her and found a new, more positive obstetrician. He encouraged me to meet with the specialist who said he could repair my uterus. This was the kind of person I needed on my team. He believed in miracles. Perhaps I was naive or woefully ignorant to the severity of my situation, but that is the thing about hope. You have to be blind to the pessimism that surrounds you or it will drag you into its shameful hole. I elected to find people who would share my optimism or at least indulge in my naiveté because they at least could look for solutions and not automatically tell me to go home and cry.

Many months later, my original obstetrician — the one who told me my chances were “nil,” called me to say that my experiences and perseverance had taught her a lot about Asherman’s Syndrome and the human spirit. While she hoped she would never again have a patient with this condition, next time she said, she would be better prepared to help.

Rather than dwell on the delay in diagnosis and the poor treatment I received from the university fertility clinic that had performed the HSG, I decided to focus on success. I poured my energy and financial resources—yes, financial resources because typical health insurance will not cover problems related to infertility--into my condition and began a resolute process of finding hope and a solution. The solution seemed simple enough in theory: I needed to clear the gunk from my uterus and my mind. I needed positive influences and information. I needed a doctor who could correct my condition.

The specialist who was three hours from my home had had dozens, perhaps hundreds of successful hysteroscopic surgeries to his credit. He was a prolific writer and speaker on the subject and he had an “anything is possible” attitude. I liked him immediately. He pulled out my HSG images and with a cursory glance, dismissed them. “Films mean nothing,” he told me. “I need to see this for myself so let’s just get to it.” And that is exactly what we did. He pulled me into an exam room and set to work. He confirmed the diagnosis with an ultrasound and set about telling me the process to remove scar tissue. Hysteroscopic surgery with use of microscissors for adhesiolysis is the preferred surgical option to remove scar tissue. Laser surgery can do more damage to the uterus than the careful cutting by a skilled surgeon who is using a hysteroscope to guide his cutting. The amount of scar tissue removed at each surgery, however, is currently a matter of surgeon’s preference or professional judgment based on experience. I underwent multiple hysteroscopic surgeries under conscious sedation followed by high doses of estrogen to encourage endometrial growth. A week after the first surgery, he would check my uterus to see if the area was still open and after a few weeks of healing, he would perform another surgery.

I needed to have six surgeries all told. The final one was completed at a local fertility clinic where I would also be under the immediate care of a reproductive specialist since it was becoming apparent I would need additional fertility support.

Early in the process of my surgeries, I started going through hypnotherapy training with a women who specialized in working with infertile couples. Not only did this amazing lady teach me relaxation and visualization techniques, she was a valuable resource for navigating the medical system and the various diagnostic tests, surgeries and fertility services I would need. It is odd to me that as I look back at this year-long struggle, there were obvious moments of deep despair and disappointment. Underneath all the sadness was an overwhelming feeling that another child was waiting to join our family. I could not shake the little voice in my head and the more I heard it, the stronger my conviction grew. I credit the ability to tune into this voice to my hypnotherapist who helped buoy my spirits and taught me to focus on a successful conception and birth. Under her guidance, I developed an unshakeable belief in a baby girl. She was so alive to me that I would dream about her blonde hair and could see her taking little shaky toddler steps. I had dreams about her in the car seat, watching Handy Manny on television and playing in our family room. She was destined to be on this earth and no amount of pessimism and gloomy prognoses could deter me.

I cannot understate the importance of building up an unassailable belief that we would have a child. This near-obsession in a baby girl sustained me through an incredible and painful journey. Without it, I would not have had the fortitude to challenge a medical system that immediately labeled me infertile and gave me no way out. Infertility is not a matter of survival to an insurance executive. With cancer, you get a few more options but infertility is a benign condition to those who control the bureaucracy and entangle even the best of doctors. Restrictive regulations force doctors to follow protocols and diagnosis codes that do not necessarily favor the patient. It takes something extra to keep an infertile woman from giving up. In my case it was irrational belief in a baby girl.

The day Mike and I found out about the twins is still seared into our memories. We had returned to Dr. G.’s office for an early-term ultrasound. I was less than two months along—a full month before the time most pregnant women have an ultrasound. The image showed two distinct dots in their own sacs happily dividing and creating tiny human beings. First we nearly fainted and then we cried with joy. It seemed so fitting to have two babies after all our pain. We would have so much fun with our babies. What a blessing.

I still have this early ultrasound of the girls however, I haven’t had the heart to look at it since I came home from the hospital; it has been over three years now. The fact is that I can scarcely talk about the baby we lost without crying. We so wanted both our baby girls with us. From that moment of surprise at seeing two black dots on an ultrasound through the rest of our lives, we knew would do anything possible or impossible to bring them into the world safely.

One of our babies did not survive and the story of our challenge to save Beth — the one who lived — is nothing short of miraculous. But we are familiar with miracles. It was a miracle that I conceived. It was a miracle that one of our babies was saved and so much so that I have written a book — or actually am still writing that book.

What is important now is that Beth, child who was given no chance to exist by every doctor we ever met, except two — the one who saved her life and the one who helped create her life — is here. She is perfect in every detail: vibrant, healthy and full of the same piss-and-vinegar that helped me fight Asherman’s Syndrome.