* JENN *

I conceived what would have been my first child on Tuesday, March 13, 2001. On Thursday, March 29th, I tested positive on a home pregnancy test. In our blissful joy we headed straight for the doctor’s office to have the blood test done. When the lab called back later that morning, the results were…inconclusive. The nurse arranged a second test, a beta quant, to measure the amount of pregnancy hormone (called human chorionic gonadotropin, or hCG) in my blood. A nonpregnant woman has an hCG level below 5, so anything above that would be a positive indication. The previous test had been a beta qual, which really just determined whether ANY hCG appears in the blood, not how much. All of this was irrelevant to me at the time; all I wanted was an answer. I didn’t know then that these terms soon would become very familiar to me. The nurse called back later with the news that I was pregnant, and my hCG level was 36. We set an appointment for my first OB visit 3 weeks later, on April 18th. My first setback, albeit a minor one, was the postponement of my first OB appointment. The morning of April 18, the doctor’s office called to cancel and reschedule. I rescheduled the appointment for April 25th, and the week went by slowly.

A COMPLICATION
When the day finally came, we were beyond excited and ready to meet our baby. My husband was a little disturbed by the vaginal ultrasound machine, so he stood up near my head and we watched the monitor with anticipation. We watched…and watched…and watched. The doctor moved the ultrasound wand everywhere, much to my discomfort, and didn’t say a word. Deep in the bottom of my stomach I began to feel sick. Something was wrong. “Tell me you see something!” I told the doctor. She couldn’t; although my uterus was there clear as a bell, the only other thing she could see was a strange collection of small black circles. Then, without so much as a comforting word to prepare us, she told us that “20% of all pregnancies end in miscarriage,” and she bolted out the door to set me up with some blood work. As I got dressed I burst into hysterical tears, sobbing on my husband’s shoulder. I cried as the lab technician drew my blood. I cried all the way home. At home, we cried together.

The next day the doctor called me at work with the blood test results. The results confirmed that I had hCG in my blood; in fact, my levels were up to 33,000. She told me she wasn’t sure what was going on, and that perhaps she’d made a mistake with the ultrasound. She wanted me to go for another at a different laboratory. I thought this meant that I could still be pregnant, that everything could be fine, that it had all been a big mistake. In retrospect, that little bit of hope was the worst thing the doctor could have given us, because it made the truth even harder to bear.

On Friday, April 27, 2001, I went for the second ultrasound. The technicians were not allowed to tell us what they saw on the monitor; they had to tell my doctor and she would let us know. So I lay there watching their faces as they silently did the abdominal ultrasound and then the vaginal ultrasound. I saw expressions cross their faces that I didn’t want to see, didn’t want to understand. They didn’t have to tell me what they thought. We held out hope anyway, even as they moved and pushed and pulled the ultrasound wand until I wanted to scream from the pain and discomfort and stress and emotions I was feeling. On the way home from the ultrasound I had my blood drawn for another beta quant. The doctor called us at home a few hours later.

MOLAR PREGNANCY
“The pregnancy isn’t viable,” she told me. She went on to tell me that they suspected I had had a molar pregnancy and that the clumps of tissue she’d seen on the ultrasound were the molar tissue. I had to have a D&C the following Monday to remove the tissue. The worst news came last. I wouldn’t be able to get pregnant again for at least 12 months, and I would have to have my blood drawn regularly for monitoring. I didn’t know why, didn’t know what it meant to have a molar pregnancy. I turned to the one resource that had never failed me—the Internet. I spent the weekend searching for information. While searching, I also found a personal Web site dealing with molar pregnancy. It made me feel less alone to know that others have had this condition.

REMOVAL
My D&C was scheduled for Monday, April 30th, at 4:30pm. We arrived early and had to wait almost an hour, during which I ran the whole spectrum of emotions from grief to anger to fear. I went down to pre-op, where I changed into the hospital gown, had my IV (intravenous fluids) line inserted, and waited to be taken into the operating room. The doctor who was performing the procedure came and talked to me about it and about the molar pregnancy. I learned that my hCG level was up to 45,000, and that it was this high level of hormone, combined with the negative ultrasounds, that had caused concern and had led to the conclusion that the miscarriage was in fact a molar pregnancy. The doctor also confirmed again that I could not try to get pregnant again for at least a year and that I would have to have my blood drawn regularly and a beta quant run on it to ensure that my hCG levels went back to non-pregnant levels and stayed there. If they began to rise again, that meant the molar tissue was regenerating. Essentially, this tissue could regrow itself spontaneously, and if that happened, it was basically a cancerous tissue and would have to be treated with chemotherapy.

When my time came I was put in a wheelchair and pushed down the hall. The operating room wasn’t quite what I’d expected after years of watching “ER”; I remember it being cold and empty except for the table in the middle and the machines around the table. I got up on the table and had to move down until I was in the right position—essentially the same position women are placed in for a regular pelvic examination, except my back was not raised; the table was flat. I was cold and scared, and I began shivering and crying at the same time. A nurse dried my tears for me; I remember her face hovering above me. I was put under sedation soon after, and I remember nothing of the procedure itself.

I came to as the gurney I was on was being pushed into post-op. I was crying hysterically, knowing that it was all over. I don’t know whether I’d cried throughout the procedure or not, I just remember waking up and being in hysterics. The post-op nurse wasn’t very friendly, in my opinion; she kept yelling at me to stop crying and telling me that I was young, “Just a baby” she said, and would get pregnant again soon. She didn’t seem to have any sympathy for me at all, and it made me more sad and more angry so I cried harder. I only calmed down when I realized my blood pressure was sky high. I begged for my husband but was told he would not be allowed to come and see me until I stopped crying and settled down. So I lay there, sniffling, while they took my blood pressure again and again. I was bleeding, so they had to give me a pad and these really freaky net-like underpants. After a while they gave me ginger ale and crackers and told me I could go home once I’d eaten and kept the food down. My husband and my mom came down to see me, and when I was released they accompanied me as I was pushed in a wheelchair to the parking lot.

On the way home my husband told me that he’d spoken with the doctor after the procedure. The doctor had told him that he wasn’t sure it was a molar pregnancy after all, that the tissue he’d removed didn’t seem like molar tissue. He was sending the tissue out to be tested by two different pathology laboratories to confirm the diagnosis. In spite of everything that had happened, we felt a glimmer of hope that this was not a molar pregnancy after all, that it was just a normal miscarriage, and that maybe we’d be able to get pregnant again soon. I recuperated at home for several days but didn’t hear anything from the lab. Feeling better, I went to work on Friday, but by the end of the day I was doubled over in pain. A long weekend at the medical center and a follow-up appointment the next Monday resulted in mixed diagnoses; whereas the after-hours clinic was sure I had an infection and had put me on antibiotics, the doctor I saw on Monday said I was having contractions as my uterus returned to normal. She told me to keep taking the antibiotics though, just in case.

BETA QUANTS
I had my first post-D&C beta quant blood draw on Wednesday, May 2. My hCG levels by then, only two days postprocedure, had dropped from a high of 45,000 to 11,000. I had another draw a few days later, and it went down to 2,700. Another week, and it was 1,100. Then 500, then 250, then 100. It hit nonpregnant levels (ie, below 5) the week of June 4, 2001. I am writing this on June 12, 2001, and I now have to have two more weekly beta quants. If both are below 5, I can begin testing less frequently—once a month rather than weekly. I can’t try to get pregnant again until my levels have stayed down for a year, which means June 2002 at the earliest.

CONCLUSION
I may get pregnant again, and I may deliver a healthy, happy baby. I may also get pregnant again and relive these awful months all over. I can’t know now what will happen. As it is, I’m still encountering people who don’t know I lost the baby and come to wish me well; I’ve explained all this so many times by now that I know it by heart. I imagine that I’ll see a lot of my doctors when I get pregnant again; my risk of having another molar pregnancy is higher now, and it’s a safe bet they’ll want to monitor me.

But the chance of having to go through all this again isn’t what scares me right now. At least, it isn’t the scariest thing I’m dealing with. Right now, my biggest fear is that my hCG level will rise, that the molar tissue will regrow, that I will have to face cancer and chemotherapy. They say that this form of cancer is nearly 100% curable, but that doesn’t calm me and certainly won’t calm me if I develop the cancer. People will say it’s not likely, that the odds are against it, that I shouldn’t worry about it because it most likely won’t happen. To them I say only this: my chance of having a molar pregnancy at my age—I’m 26—was very slim, but I had one anyway. Don’t tell me the odds, because I’ve already lost to them once.

In the meantime, I hope that by sharing my experiences I will help others in my situation to understand their own feelings and fears. Molar pregnancies are so uncommon that only women who’ve had them or know someone who’s had them even know that they exist at all. It’s time for women—especially those who are pregnant or will become pregnant—to know that they are at risk of a molar pregnancy.

UPDATES
June 19, 2001
I’ve had my second negative test, and now I can start going monthly. Woo-hoo! No more feeling like a pin cushion.

September 24, 2001
Three months down, 9 to go. So far, my levels have stayed down. In the meantime, at least 2 members of my Molar Pregnancy support group have gotten pregnant, which bodes well for the rest of us and gives me great hope.

February 1, 2002
Seven down, five to go. My levels haven’t risen at all, which makes me frustrated at having to wait so long and still have so many tests. I guess I’ll feel better when the year goes by without a rise, but it’s taking forever! It doesn’t help that I have friends who are pregnant now; I still have those moments of “why them and not me?” I’m happy for them, but I can’t help being jealous either.

June 10, 2002
I made it! I got the all clear last week from my doctor. It’s been a long year, but I made it through without a rise in my levels. Now it’s time for the baby making!

February 27, 2003
I haven’t updated in a while because I didn’t want to jinx anything, but now I think it’s safe to tell everyone that I’m pregnant!! I’m 22 weeks along as of this week, and we just learned that we’re having a boy. So it really is possible to get pregnant and have a healthy, normal pregnancy after a mole. I’m living proof.

May 9, 2003
I’m now 32 weeks pregnant. I’ve been really lucky so far to have a relatively easy pregnancy. The baby moves and kicks all the time, and my only real problem has been adjusting to my growing tummy. I’m sore, and I’m tired, but I’m happy and excited as well. I can’t wait to meet our baby.

June 25, 2003

Our son was born 6 weeks early on May 23, 2003 at 7:08 am. He was breech and had to be delivered by c-section, but despite his early arrival he weighed a whopping 6 pounds, 1 ounce, making him the heavyweight champ of the hospital’s neonatal intensive care unit, where he stayed for a week before coming home. He is my sunshine, my angel, and the joy of my heart.

March 14, 2014Me with my son in 2007
A lot has happened since my last update. In 2008 my son was diagnosed with high-functioning autism and attention-deficit/hyperactivity disorder. In 2009 my husband and I separated, and we divorced in 2011. In 2010 I met my current husband, Bill, and we married in May 2013. Earlier that year, in February 2013, I was in a serious motorcycle accident that caused a traumatic brain injury and other injuries, but I am happy to say that I have almost fully recovered in the year since, and every day I get even better. Regardless of all of these changes and all of the challenges that have arisen in the 13 years since my molar pregnancy, I have never forgotten the baby I lost. Running this site has been my way of turning that horrible event into something good, and I hope that you find the support and help you’re looking for here.

Advertisements