It's Not Just Loss

My family is happy and healthy. We are busy with homeschooling, extra curricular activities, work, birthday parties, holiday dinner planning and just general delightful chaos. It wasn't always this way. When my husband and I decided to build our family, it didn't happen like we thought it would. It was confusing, frustrating and heartbreaking. It was all consuming; It took over my world and it was all I thought about. Although we have never had to endure the unfathomable loss of an infant, we did have to endure unpredictable, on-going issues with my health.

My now 9 year old son was 18 months when we decided to have another baby. He was conceived quite easily, and it didn't take long for us to become pregnant the second time around. I did the usual things that I had done before: made an appointment with the local midwives, stopped drinking alcohol, took my vitamins and went to bed earlier each night.

I noticed my pregnancy symptoms hadn't arrived. No nausea, no sore breasts, no fatigue. It was concerning but I tried to be positive. At 9 weeks I noticed spotting. I saw my midwives but they couldn't find a heartbeat so they ordered an ultrasound. As I lay on the bed in a dim room with an intravaginal ultrasound inside me, the technician didn't turn the screen for me to see the baby like they usually do. She didn't speak, she didn't reassure me. When she was finished with the exam, she said she couldn't disclose any information. She would let the midwives know and they would contact me with the results. I knew, of course. My pregnancy had failed.

I went home and waited for the call. Finally the midwives called later that day and told me that the pregnancy was non-viable. They had found it was a blighted ovum, a type of very early failure, when a fertilized egg never develops into an embryo. Instead of expelling the tissue early on - perhaps disguising it as a menstrual period - the tissue hung on inside my body for weeks. The spotting was indication that my womb was about to give up and let go. I tearfully asked what I was supposed to do next. They softly explained that I now had to wait for the process to start. Needless to say, my husband and I were heartbroken.

A few days later the bleeding began. I was feeling a bit crampy so I took the day off work and curled up on the couch with tea, ibuprofen and a movie. In the afternoon, without warning, the cramping became so intense that it had me writhing on the floor, sweating, shaking, and paging the midwives. Something must have gone very wrong. As the midwife was making her way to me, I also called 911. The midwife arrived as I was on the phone with the dispatcher and she was able to tell them what was happening. Paramedics arrived shortly after to find me on my hands and knees on my living room floor unable to move because of the pain. They offered me nitrous oxide (laughing gas) and carried me downstairs and into the ambulance. Before we left, the midwife called my husband.

During the 20 minute ride to the hospital I felt the miscarriage tissue release into my pants. I arrived at the hospital, was placed in a room and was finally able to catch my breath. No one heard me when I said I wanted the tissue out of my pants. It sat there for an hour. When it was finally cleaned up, a nurse took a rough washcloth and wiped me in an incredibly hard upward motion, scraping my clitoris and causing me extra pain. The midwife cringed as I jumped in pain.

My husband arrived just as I was about to be taken to an examination room to endure a pelvic exam by a student doctor who placed a speculum in my vagina and widened it with unnecessary vigour. The midwife and my husband held my hands as I breathed through the pain of him examining my tender tissues. In hindsight, I wish I had refused this exam. The exam led to the assumption that the tissue had gotten stuck in my cervix, causing the sudden onset of pain. There was nothing left there now.

I was sent home with instructions to have my blood drawn within the next week to be sure there were no signs of HCG (pregnancy hormone) in my bloodstream. If there were, there may be some tissue left in my uterus that would need to be surgically removed.

I took more time off work to emotionally and physically heal from the miscarriage. Bleeding slowed but only to light spotting. As time went by, I realized that I had forgotten to get the blood test. About 2-3 weeks after my hospital visit, I finally got it done. The midwives called and with a happy tone said "your blood test results shows that you're pregnant again!" . I told them that was interesting because I was currently having a heavy, bright red, watery period. They ordered another ultrasound, but it showed that my womb was empty. I was then sent to a gynecologist.

The gynecologist explained to me that my symptoms and test results were leading him to believe there could be a chance that I have a very rare form of cancer called Gestational Coriocarcinoma. In very rare cases, an egg can be fertilized but develop incorrectly and cause this type of cancer. The cancer usually starts in the uterus but can spread to other parts of the body and be aggressive and very difficult to treat.

Choriocarcinoma forms when cells that were part of the placenta in a normal pregnancy become cancerous. It can happen after a miscarriage, abortion, ectopic pregnancy, or molar pregnancy -- when an egg is fertilized, but the placenta develops into a mass of cysts instead of a fetus. If the choriocarcinoma is in your vagina, it could cause bleeding. If it has spread to your abdomen, you might also have pain or pressure there.

So not only did my pregnancy fail, leaving me to endure a loss, I was now possibly having to face a battle with cancer. The plan was to test my blood weekly for a month. After that, we would reassess. If the HCG levels at any point rose above a certain amount, I was to see the gynecologist immediately to discuss treatment. The goal was to see the HCG levels disappear. Only pregnant people should have HCG levels in their blood.

So there I was, terrified I was about to die and leave my son and husband. I took my weekly blood tests diligently. They stayed the same for weeks. I tried to go about my daily life. I went back to work at the StrongStart program I facilitated, visited with friends and family and spent time with my husband and son as much as possible. Many people in my life were understanding, but many were not. A family member had said that I shouldn't have told anyone I was pregnant. She believed these were private matters. I strongly disagree with this notion for so many reasons.

My birthday rolled around and I wanted to take a day off of work to have a long weekend to de-stress. My boss was informed of my health problems but when I asked for the day off, he was not supportive and filled his email with condescension and guilt.

A couple more weeks passed. The tests were the same. We were still waiting for some sort of change. I was sitting in my living room with my husband when I began to get strong cramps. My bleeding had stopped a couple weeks back, but I had had a menstrual period 2 weeks ago. I didn't think I should be getting another period, but I also didn't know what to expect in this situation. The cramps got stronger and stronger and my husband sat with me not knowing what to do. He had come home from work for lunch and needed to get back. He was torn. Maybe this was just all part of the healing process?

He went back to work as I sat in my living room breathing through consistent cramps. It was about an hour later that I felt something pass into my underwear. Once in the bathroom I found a piece of smooth flesh in an oval shape about half the size of a chicken egg with one small string of flesh on it where it must have been attached to my uterus. There was absolutely no blood. The ultrasound never found this tissue. I sat there confused, not knowing what to do next. I placed the tissue in toilet paper and went to call the gynecologist office. The woman on the phone said "OK that's fine. You can just throw it out." I asked because of the circumstances, shouldn't it be tested? She said there was nothing they could do. She would just let the doctor know. That's it. After 6 weeks of wondering if I have cancer or not, I am just expected to flush it away and move on.

I took one more blood test after that. It was negative for any HCG. It is unknown if the tissue my body passed was leftover from the initial miscarriage or if I had become pregnant again and the tissue I passed was another miscarriage. Either way, it was a relief that I didn't have cancer.

I had one more miscarriage before conceiving my second son. This time, when spotting started, I didn't wait for the process to start on it's own. I went to a doctor and asked for Misoprostle, a drug in the form of a pill that is inserted into the vagina to aid in discontinuing an early pregnancy. It takes about 20 minutes to start it's effectiveness, so it is recommended that you wait until you are at home to insert the pill.

All in all it took us about 15 months to successfully grow a baby. 15 months is insignificant in the grand scheme of things, I know, but adding a terrifying health scare to the picture is torture.

This is my story. I tell it to raise awareness of how different our stories can be and how much more we need to talk about them. Miscarriage isn't just a heavy, uncomfortable period. It's not just "God's pruning" as they say. It's never OK to say "at least..." to a woman who has just endured a loss and/or rough treatment by caregivers. You probably don't know the whole story and how traumatic it might have been.

These are stories of losing control, being unseen and unheard, being confused, being frustrated, being uncertain, and having your life threatened.

It's not just loss.