Some people who write blogs do it to share their innermost feelings or journal the ins and outs of their daily struggles. I’ve discovered I’m not that kind of blogger. When things are very stressful I keep them between my husband and I – possibly one good friend. And since I can’t write here about the thoughts that are consuming my every waking moment, I just don’t write at all.
I’ve been vague-booking on Facebook about my problems – something I hate when others do. I apologize to anyone who has had to endure this annoying behavior but part of me wants to share and part of me just wants to keep up the front that all is well. But it’s ten a.m. and I’ve been asked twice already if I’m doing ok – so the front has obviously got some cracks in it. More importantly, if I can spare one person the pain of what we’ve gone through, it will be worth it to describe our experience.
Time to level. Here’s the deal. Pull up a chair. I’m a cautionary tale.
My reproductive history goes something like this: Miscarriage, stillbirth, miscarriage, live birth, 18 months of unexplained infertility, miscarriage, miscarriage….now what?
The most recent loss in this vicious cycle of hope and disappointment was last week. We’d seen a good ultrasound already and were well on our way to being “out of the woods” (but really – there is no such thing) but things felt very wrong. All my exhaustion and nausea had vanished overnight. I insisted on an ultrasound, which showed no heartbeat. Sometimes it would be nice to be proven wrong when I am predicting doom, but so far I’m five for five.
But I said I was a cautionary tale and we’re getting to the lesson.
My first four pregnancies were with the same doctor. After the first miscarriage he said “these things happen, but it will work out next time.” After the stillbirth of our daughter, he said “I’m sure it was a cord problem and these things happen. Next time will be fine.” After the third miscarriage, I had an unrelated surgery and he asked the surgeon (not an OB/GYN) to visually inspect my reproductive organs. He reported they looked perfect. For the fourth pregnancy, he decided to put me on a progesterone supplement and nine very tense and anxious months later, we had Robbie.
We breathed a collective sigh of relief and patted ourselves on the back. We had the problem solved. I had a healthy baby and I was happy to think this was all behind us and I could expect future pregnancies to go smoothly. We had the answer.
When Robbie was two, we started trying to get pregnant. During this time, my OB suddenly and unexpectedly died. I moved my records to another doctor, and after 18 months of inexplicable infertility (meanwhile telling everyone I knew that we just didn’t want another baby yet), we got pregnant. But in spite of the hormone supplementation, we quickly miscarried. Two months later, I got pregnant again and just when we started telling people, we miscarried again.
This time, we went straight from the ultrasound tech to my doctor’s office. The first thing he said when he walked in door was “something’s obviously going on here.” Had I not been keeping a reign on my temper I would have screamed “You think?!” I’m glad I remained civil, because he next said that as soon as we dealt with the situation at hand, he was going to refer me to a Maternal/Fetal Medicine Specialist for testing.
When I pushed for more explanation, he told me that in recurrent miscarriage blood clotting disorders, hormone deficiencies and antibodies are often the culprit. All of this can be screened for with blood tests and most of it is treatable.
Over the next few days I researched these tests, the treatments and the statistics on how effective they are. I also read again and again that testing for these disorders is recommended after two losses. Two. I’ve had five.
To say that I’m angry with my first OB would be an understatement. At no point did he suggest testing. He mentioned “some people” test fetal tissue for genetic problems but said it was a waste of time and money in most cases. The instant our stillborn daughter was in his hands, he said “yes, a cord problem” but no tests were done. She wasn’t even seen by a pediatrician or perinatologist to confirm his visual assessment.
The worst part of my anger is directed at myself. I should have pushed. I should have insisted. I should have demanded a second opinion. But I accepted his platitudes and pats on the head because I didn’t want to be rude or dramatic. He was always kind and he was the OB/GYN for all the women in my family. Everyone thought he could do no wrong, so I kept my anger to myself and tried not to be a drama queen.
If it turns out I do have a treatable blood disorder, it will mean that we’ve been losing healthy babies – killing them, in effect, because we didn’t test for disorders in my body that were causing problems. It’s still possible the tests will turn up nothing. It’s still possible all these losses will be chalked up to bad luck or bad genetic match-ups. But it’s looking less and less likely.
When I meet the Perinatologist, I plan to be pushy. I plan to be direct. I plan to ask a lot of questions until I understand everything he says. I plan to come with a list of questions and not let him or her leave the room until they are answered. I plan to tell myself over and over “He’s working for ME” and not settle for less than excellent service.
To anyone experiencing fertility problems, I hope you’ll do the same from the beginning. It might have saved us a lot of misery.
