I have decided to share my story because I know there are other women out there going through similar experiences. I know that when you do go through this, you feel like no one else gets it and while they may try to offer words of support it is never enough. But I am here to tell you that I get it because I have gone through it far too many times, and here I am again. I have experienced 7 miscarriages and one full term pregnancy over the course of 14 years. Yes, that is right 7 miscarriages, and that is far to many for any women to endure. The emotions with each have been different as my awareness and knowledge has grown with each loss.
When I had my first miscarriage, I was completely in shock. I was a newly wed at age 24 and there was nothing unusual about my pregnancy until I reached 10 weeks gestation. I was sent in for a ultrasound that showed a little fetus but since the ultrasound technician did not tell us anything I still had no clue as to what was going on. So there we were sitting in the doctor's office when the he came walking in and announced that my baby had died two weeks earlier. How could that be? How could I not know that whole time? With shock came the horrible ability to hide away my emotions. After a few weeks of nothing happening I was scheduled for a D&C procedure. Something that I would now suggest avoiding at all costs. At a follow-up appointment I was informed that there was nothing genetically wrong with the baby so they had no idea why this had happened. Of course I still look back on every action that I had taken, and question what I had did wrong. Then unexpectedly came pregnancy number 2. Given the second pregnancy was so close to the first the same doctor told us that it was very likely that I would miscarry again. So I went along for a backpacking camping trip which had already been planned. This was something I really should not have done, but I was still living in the phase of "doing what others wanted from me" mode. By the time we returned from the trip I was bleeding and cramping. Same diagnosis, fetal demise at 8 weeks gestation. What followed was extreme grief, self-blame, anger and about every emotion in between.
The most difficult part, with these first miscarriages, was that friends and family did not really get it. Those who came to visit still expected me to entertain and pretend like nothing was wrong. After all I was young and I was told by everyone that I had plenty of time to have another baby. When I became pregnant, the third time, I found a new doctor who put me on progesterone pills and I did everything I could to take care of myself. To our surprise I made it to 12 weeks gestation and beyond. On November 27th I delivered a 9 pound 12 ounce baby boy via C-section. Since I had no complications during my pregnancy, other then being on the border for gestational diabetes, the docs had no reason to believe that there was anything wrong with either one of us and so life went on as any young couple with a new baby.
I wish I could say that I savored every minute of my pregnancy with my son. I wish I could say that it was completely planned and stress free. But the truth is I spent the entire time worried about bills, worried about becoming a mother, worrying about everything. I had just finished my masters degree and had only been working for a year when I became pregnant again. Several months into my pregnancy my husband was offered a slot into a graduate school program and accepted. This meant that we had to sell our home, get new jobs (while hiding a pregnancy) and move five hours away. Since I had not worked for the agency for a full year, before giving birth, I was not granted full rights under FMLA. My maternity leave was unpaid and we had to pay the premium for our health insurance, in full, while I was off of work. I had just got off the phone with the HR director when I was wheeled out of the hospital with my newborn son and I cried the entire time. I had to return to work just 6 weeks after having a C-section. My son entered day care when he was 8 weeks old. I will never forgive myself for that, but thankfully his daycare was in the same building that I worked, so I was able to visit him on breaks. If I knew then that he would be my only newborn I would have savored every moment, every breath. The grief that I have over my regrets around his first year of life are insurmountable. At the time I was just doing what I needed to do to survive and pay the bills on time.
Fast forward five years later and we decide it was time to add to our family. Since I had a previous history of miscarriage I was given a early ultrasound at 8 weeks gestation. Right away concern was present because the fetus was not developed as far along as it should be, but there was a faint heartbeat. I was filled with hope, only to be crushed when two weeks later the baby was gone, vanished before my very own eyes. Then came pregnancies five, six and seven over the course of a couple years. Each time I became pregnant I was filled with excitement and very brief peace, then the anxiety washed over me like a big dark waive. I rested as much as possible, cut out the caffeine and any alcohol. Took my vitamins and my progesterone supplement. Got some exercise, but not to much. Read everything I could about how to prevent a miscarriage. And despite this there was really nothing that I could do. Each pregnancy ended in the same diagnosis, a Blighted Ovum and Missed Miscarriage. A Blighted Ovum is defined by the American Pregnancy Association as what happens when a fertilized egg attaches itself to the uterine wall but the embryo does not develop. Because a pregnancy sac and early placenta is still formed the pregnancy can proceed into the fist trimester with pregnancy symptoms.
I am not sure what is worse, not being able to get pregnant at all, or getting pregnant and going through all the early pregnancy symptoms only to find out that my baby will never grow into a baby after all. There will be no heartbeat, not fetal pole to be seen on that very early ultrasound. This felt like a very cruel joke from biology. The ultrasound experience, meant to be a positive time when you get to see your baby for the first time, became a time of trauma and terror for me. With each pregnancy they would order a ultrasound only to find a empty sac, or a sac with a yolk but no baby. Each time they would determine that it was to early to call it and reschedule me back in two weeks. I can tell you that trying to live your life while wondering whether or not the baby inside of you will thrive and grow, is nothing less then excruciating. Now imagine talking with other pregnant women who declare what a miracle it is to have God weaving the child within them. With each pregnancy, I could barely sleep, could barely talk to anyone, became irritable with others, and extremely anxious. I have prayed and pleaded with God and asked more times then I can count "Why me?".
Over and over again the best OB doc in town told me that it was just "bad luck", that the odds of having anything chromosomally wrong with either one of us was extremely rare. Well, I was already falling into the extremely rare camp. Statistics indicate that if your first pregnancy miscarried, you have only a 13% chance of miscarrying again. Also at the 13% chance is having another miscarriage, even after a live birth and subsequent miscarriages. The rate of miscarriage with each single pregnancy is as high as 10 to 30%. But only 1 to 2% of women will experience three or more miscarriages in a row. Lucky me.
In between my pregnancy losses, life went on. My husband finished two masters degrees and I completed my PhD. We bought and sold several houses and moved multiple times. I changed careers from working in community mental health to school psychology. We also adopted two children, as those of you who read this blog know. We had always planned to adopt in addition to having biological children. So that part of the puzzle really took no thought at all. We decided very early on that fertility treatment was not the plan for us. I love all of my children with every bone in my body yet I continued, and still do, grieve in silence over the loss of my babies. I sat by while my co-workers had babies, and had no choice but to contribute to the baby showers that happen every year when you work in the schools. I spoke up for my rights when my employer tried to deny me the same leave benefits for a adoption as for the birth of a child. I said nothing though, when the administration and secretary staff, at two different schools, failed to recognize my adoptions yet turned around the same years and held school wide baby showers for the other women giving birth.
I silently held the chip on my shoulder that has grown bigger and bigger over the years. I learned to ignore the insensitive comments and jokes that others make about pregnancy. After all, people who do not know me well, have no idea that we have experienced multiple pregnancy losses, because we have one biological child. I turn my head in public when I walk by teen mothers, or any pregnant women for that matter. I try not to talk publicly about the cruel reality of fertility. Why is it that so many women who do not take care of themselves; who smoke, or drink when pregnant, even use drugs, are able to carry one pregnancy after another to term yet I cannot? And then there are the doubts that this places on my Christian views. Could this really be the plan that God has for all of us? That so many educated, healthy women could want a baby and not be able to have one, while so many children are born into neglect, abuse and poverty? All these questions, all these emotions, all this self-blame is enough to drive a person crazy and at times it has.
And so it was not until the age of 36, and six miscarriages, later that I finally made a appointment for myself and my husband to see a genetic specialist. We were tested for everything under the sun with all coming back normal except one little thing, the rarest thing of all. It turns out that my spouse has what is called a Balanced Chromosomal Trans-location, located on chromosomes 13 and 17. This means that one little piece of chromosome 13 broke off and switched places with chromosome 17. This happened before his birth. It can be a genetic anomaly, it could be hereditary, but it also could be caused by radiation exposure to either his father or mother. A trans-location can be un-balanced, as in a specific form that causes a sub-type of Down's Syndrome. Other chromosome trans-locations, on specific chromosome markers, have been linked to causing types of lymphoma, thyroid cancer, leukemia, even schizophrenia. His type of balanced trans-location causes no problems with the adult carrier but increases the risk for miscarriage, as well as the risk for having a child with a severe disability. It turns out that myself, and my unborn children, get to pay the price for something that I had nothing to do with. A chromosomal condition is extremely rare. Of the 2% of women who experience three or more miscarriages, only 2-5% of those couples will be found to have a chromosomal abnormality as the reason. I probably have as good of a chance at winning the lottery, but this is the fate that has been handed to us.
With this news came relief as well as frustration. We were told that our odds are as follows: 33% chance for a miscarriage, 33% chance for a child with a severe disability, and a 33% chance for a healthy child. Given that we had no idea that we had this condition, we were clearly relieved that our son was born healthy and free from any disabilities. The frustrating part was that our miscarriage rate was up to 86%. We were given three options; 1) stop getting pregnant, 2) keep trying and take the risks, or 3) seek in-vitro treatment with pre-genetic screening of the fertilized embryos. Considering the last option would cost about $40,000, or more, for a course of three in-vitro attempts with pre-genetic screening, and the fact that my age already reduced the chance of a healthy pregnancy (also ruling us out any money back guarantee or reduced costs egg donation fertility treatment programs) we clearly did not choose the last option.
After all of that news we tried to move on with acceptance and appreciation that we were perhaps rather lucky after all. But here I am writing this because I have now experienced miscarriage number 7, Blighted Ovum number 4. And this one is hitting me harder then any of the others. Maybe because the whole process has been traumatic. This time, as soon as I found out I was pregnant, I not only worried about miscarrying, but I also worried that the child could have a serious disability. I researched what prenatal genetic tests were available. I was again scheduled for a early ultrasound and it took two more over the course of several weeks before receiving the final blow at 9 weeks gestation. The hardest part is accepting that I will never carry a baby again. The statistics are clear, a 88% miscarriage rate with a very high probability of having a child with a severe disability. Even if we sought out fertility treatment now, or a sperm donor, my age increases the risks for miscarriage and genetic abnormalities.
I cannot re-do my experience of pregnancy, there will be no second chances. The grief is extreme. I am angry and I am bitter. I want to go back in time and take the entire year off of work when my son was born. I want to remember every time he wiggled and kicked my belly. I want to do everything differently. And not necessarily for him, because he is now a intelligent, healthy and well adjusted 12 year old. Having him in daycare early has not, after all, caused him to have a attachment disorder or anything else. I want to re-do that time for me. Because I feel like I have missed out on so many things that I briefly took for granted. You only get to live life once, and all of this, I never expected it to be part of my story. I am left again screaming "Why Me!"
After the grief settles I know that my sanity will come back. I will again believe that God gives all of us our experience for a reason. I will be reminded that if I had not had these miscarriages then maybe I would not have adopted my children, or jumped on a plane to counsel orphans in Haiti. I will remember that my loss makes me a more compassionate mental health provider. I will try to turn my grief into compassion, my brokenness into a powerful force to do good. But it is so hard to get to that point. It is hard to work through the dark clouds and the demons that make me want to hide from the world and become swallowed in my own misery. But most of all it is hardest to get past the anger. And even once I get past the anger it is hard to loose that little chip that will always be a part of me. That part of me that will always have to look away when I see a pregnant woman and that will cringe every time I have to go to a baby shower. I understand that the grief will always be with me. When I have a client who has experienced loss, I explain that it does not come in clean stages. Grief is more like a spiral. You might feel shock, then sadness, anger and eventually some form of acceptance but it comes and goes, it gets better and gets worse. And life is what happens in between.
And so if you are out there and reading this because you have experienced infertility, or a miscarriage, or multiple pregnancy losses please know that you are not alone. Know that your emotions are normal and o.k. Don't act like nothing is wrong because that is what everyone else is comfortable with. Don't let anyone tell you that your baby was not really a baby and that you should be relieved. If you have other children, biological or adopted, don't feel like it is not o.k. to still grieve for your unborn child. If one of your living children died from a accident or disease, people would not discount the loss and tell you to just appreciate the other children that you have. Please, please, don't wait as long as I did to get the proper testing to find out why, because it may not be to late for you. And most importantly DO NOT blame yourself, ever.