May 30, 2013 by Katia
Today I was touched by two emails. The first one came from my friend, Stephanie, whose post I am sharing today, the other one from a reader by the name of Karen, who emailed me from the UK. Karen wrote:
I have been following and reading with interest the Donate a Post posts for last month or so as they are something I find a lot of comfort in. I have recently had a missed miscarriage and lost my pregnancy on February 20th this year.
Stephanie has been through a lot in the past five years, as you’re about to learn, still when I emailed her today, realizing we didn’t have a title for her post her suggestions first and foremost reflected care for others in the same predicament rather than introspection:
What not to expect when you’re expectingSpeak upSharing is caring…and healingWe are not alone
Reading other people’s struggles with infertility and loss is both heartbreaking and inspirational for me. Heartbreaking for I remember my own losses and how alone my husband and I felt in the world at that time. Inspirational for I remember the strength and love and support that we received from others sharing their stories with us and the journey we took to heal together
Loss of pregnancy – whether you call it miscarriage, pre-term loss, stillborn or infant death is an exclusive club that no one ever wants to join. Prior to joining, most of us didn’t even think the club existed. No one talks about loss. If you have never experienced it you may have heard of that cousin or remembered that friend of a friend who was pregnant but “lost the baby”, whatever that meant. You may have had a friend or a sister that had a first trimester miscarriage and thought, well, that’s why you shouldn’t announce your pregnancy before 2nd trimester, because anything can happen. And besides, it’s still early.
You might have even thought that it was probably not a healthy pregnancy. It was for the best and God’s will or our bodies taking care of what wasn’t right. The woman must have drank, or smoked, or not eaten the right foods, or taken enough Folic Acid, or even, in your darkest thoughts – she was already struggling with infertility, so obviously her body was not built to carry a baby to term. And finally – what’s the big deal, try again or adopt, there are far worse things to endure in this world.
Until it happens to you.
How do I know people think those things? Because they said it to my face when I was dealing with my loss. And over the years I’ve learned that people feel they can say those things because those of us who have experienced loss do not speak out and share our stories. We feel guilty, blaming our bodies and our lifestyle. And we feel so alone, thinking we are failures in our ability to carry out what women have been doing since the beginning of time.
The truth is that women have been losing babies as much as having healthy babies, so in fact our bodies ARE doing exactly as they were made to do. There is no rhyme nor reason for one pregnancy to go to term while another does not.
So here is my story of loss: I never wanted to have kids. I was 35 years old and never thought twice about this so called “baby fever”. Until I met my husband who informed me on our very first date that he had a wish to start a family – again. Instead of running screaming for the hills, I decided he had some pretty good traits for a guy and stuck it out with him, falling in love with him and trusting him so completely that I would give this pregnancy thing a go, because with him I felt I wanted to share the greatest intimacy a couple could share together.
Surprisingly, after 15-20 years on the pill, I had no infertility issues and got pregnant the first month of trying. So successful in fact, it was with surprise and shock that we were blessed with TWINS. I say blessed because that is what people say to you. How lucky you are! A complete family in one go! Perhaps if they knew the actual statistics they’d be less enthusiastic. In our multiple pre-natal class the nurse told us that of the 5 couples there, guaranteed one of us would not make it full term. We spent a lot of time talking about pre-labour signs and other dangers. But not that we paid much attention because it wasn’t going to happen to us! I was healthy! I was resting and eating right!
I passed through first trimester and that meant all the danger had passed. Smooth sailing from now until week 35 or so. At week 20 I found out we were going to have 2 boys and we named them Kieran and Tristan. We imagined our lives with two boys! (seriously we both expected a girl, but hey, boys OK!!) .
At 23.5 weeks along I felt really sick at work and went home early. Not an unusual thing as my ankles were always swollen at this time and I was very tired. I had felt them moving around that morning and all seemed good in my limited experience of pregnancy and in the opinion of others. I felt some mild cramping so drank some water as we were told to and eventually went to the hospital to get checked out.
I’m not going to go through the rest of the nightmare in detail. We got to the hospital and after many tests they concluded that I was definitely in labour. My first reaction was, well, you can just stop it, right? Only to be told that they have no way to stop it – no matter what you’ve been told by your friends or heard from others – once those babies want to go there is no reversing the deal. And also, despite having had babies for millennium, there is very little the medical profession can do to stop pre-term labour or even to intervene. Maybe if I made it to 24 weeks there would be some prenatal intervention they could administer to help survival. If I made it to 26 weeks survival would be greatly improved. But at 23.5 weeks they could do NOTHING to intervene, to stop the labour, to even give them a shot to help them breathe on their own. We were given the low down on their chances of survival with intervention – virtually nil, but if they managed to beat the odds and live, their special needs would be huge. We had to choose what we wanted to do post birth. Yes, we had to make the actual decision on allowing them to die a natural death, or have the hospital team intervene to prolong their lives which would have very little value in the end. I will not say here what we chose, other than both boys were born alive but passed soon after birth.
Thank god for Mt. Sinai and the wonderful care we received.
We had to make funeral, cremation and burial arrangements (or not – we still have their ashes in our possession). We sat Shiva. We have no recollection of the first 3 months – we wandered around in a haze of unbelievability, our rug pulled out from under us. We heard all the pithy sayings from “it was God’s will”, to “there must have been something wrong with the babies”, to “it could have been worse”.
The only bright light in all of this was the people we knew who came forward to tell us “It happened to me, too” So many people – friends, family, friends on facebook I hadn’t seen since highschool. It happened to them and they KNEW.
Every other week we met with a group of other parents who also experienced loss through the PBSO, now called The pregnancy and infant loss network.
We healed. We waited the 6 months before trying again. They didn’t have an answer for us but they did find an uterine anomaly called a Unicorneate Uterus – basically one half of my uterus was never fully developed, leaving a only one visible and viable fallopian tube and ovary – since a fully formed uterus looks like it has two horns, I only have one and therefore “Unicorn – eate”. The ramifications are really unknown – sometimes it never goes diagnosed – sometimes it causes pre-term labour. It may be that with twins the uterus expanded too quickly for its smaller than normal size.
The bottom line is that we will never know. The twins were healthy. The placenta was healthy. There was no evidence of anything to suggest otherwise.
We eventually tried again and 18 months after the loss of the twins we were truly blessed this time with the birth of my daughter. A textbook pregnancy and a textbook birth. She was healthy and happy and strong and did much to counter the depression and loss of her brothers before her.
Unfortunately the story isn’t over. We wanted to have one more child. I was not yet 40 and in modern day terms, with a healthy baby and no other factors it was perfectly feasible to try it again. This time it was not so easy to get pregnant. After a year of trying with no results, we reluctantly tried Clomid. The downside was that it could result in multiples. And, should I get pregnant with multiples again, we would have to consider a reduction or the potential loss of both. We decided to only give it 3 months and then end our journey to have another child.
We got pregnant the first month on Clomid, but unfortunately it ended with a loss at 5 weeks. A chemical pregnancy – it was gone before we hardly knew it was there. The second round it took and, hooray we were pregnant again!
But, I had a nagging feeling that something wasn’t right. I thought Down’s syndrome. But other than an inability to correctly gauge the exact due date, all the NT numbers came back well in the normal range. I was moved from the special pregnancy unit to a local hospital pregnancy unit. We weren’t seen as often as before and life went on. The 20 week ultrasound was inconclusive because of the position of the baby (most likely to the location of my uterus), but they thought maybe a girl? No negative results from the ultrasound or any reason for alarm. Other than my nagging feeling that was just one of those things you think about when you are an older mom.
At 26 weeks, my water broke. At work, no less, but luckily I was just down the street from Mt. Sinai. It looked like my fluid was leaking but the baby was not in distress and was moving. Besides I made it to 26 weeks! I was admitted for hospital bed rest for indefinite amount of time
That lasted all the way until the next morning when I woke up to a severe placental abruption. I was told that an emergency C-section would be performed but no worries – at 26 weeks survival was good. I had to go under general anesthetic because of my medical issues, so I missed the birth.
When I woke I up, I was told that I had a boy and he did not survive.
Another loss but for a completely different reason than the first loss. We were told he had trisomy-18, a condition like Down’s (trisomy-22) but far more severe. He had no chance outside the womb. Most do not make it through the first trimester. I told the specialist I had a nagging feeling the whole pregnancy that something was off and he said in his experience the mother always knows.
We named him Miles. The prenatal geneticist at Mt Sinai – a leader in his field – assured us that my womb was healthy and we could and should try again. Since Miles lasted happily for 6 months, it says a lot about my environment.
But we decided our 5 year journey was over. After 96 months of pregnancy I was done. We have a daughter who is wonderful and the experience of loss that I feel privileged to share with others. The pain becomes less over time and through talking about it with others. I suffered greatly in the last 5 years, a deep depression and a life on hold, but my family is strong and sharing with others has created opportunities to heal. I hope that this has given others hope that they, too, can share their stories with their friends and family and know that there Is a network of us out there that KNOW. If you are struggling, please go get support and help. You can honour your lost children and still live a happy and fulfilling life.
Stephanie Amann is a born and bred Torontonian of the Generation X persuasion. She spent most of her earlier life in an existential haze of café latte steam, worried about what she was going to do when she grew up. After a brief stint in Calgary she returned to Toronto and in no short order; founded the Toronto Outdoor Club – still going strong with 2000+ members, got married, got pregnant and is now a proud (but mostly amazed) mama to a 4 yr old Princess Fairy Tomboy and sometimes Robot. She still wonders what she’ll be doing when she grows up. In the meantime, she’s working hard at getting her outdoor club for families up and running. You can check it out on facebook or on the web at TorontoOutdoorFamilies.com.