Tuesday, October 4, 2011

The same, only different

I have so much on my mind and in my hurting heart I don't even know where to begin.

The last few weeks featured some incredibly painful, difficult experiences, some of which are only now catching up to me after I've had some time to process my feelings. I've felt like I've had to defend our pain, the details of our loss, the fact that we are now parents, that our children existed, and on top of that, walking the tightrope of either stomping on someone else's feelings and experiences or being stomped on myself.

I've enjoyed reading the words of another blogger, Devan, who has experienced many more losses than Paul and me with grace and poise. This week, she shared about her experiences blogging to a much larger audience, opening herself up to support and criticism from readers, and identified a phenomenon I completely understand: the prevalence of baby loss mamas, as we're called, to compare our grief. Devan shared that she and her husband classify the loss of their son, Triton, at 14 weeks, as stillbirth, even though the medical community in the United States only recognizes losses after 20 weeks' gestation to be stillbirths. Some of the resulting comments she received from other grieving mother were horrible...and at the same time, not surprising.

Paul and I don't personally consider our loss to be a stillbirth because to do so just never occurred to us. We DO consider it to be horrifying, devastating and life-altering. I struggle with what it's really called: a miscarriage. Yes, the loss of any pregnancy from 4 through 19 weeks' gestation is technically called a miscarriage. Most miscarriages occur during the first trimester, usually due to chromosomal issues with the embryo (or, after 9 weeks, fetus). What happened to Devan and to Paul and me - a late miscarriage, or one that occurs during the second trimester - is much less common.

Folks in some of our circles - and actually, probably most of society in general - assume, after hearing we had a miscarriage, that we've lost an embryo early in our pregnancy, perhaps passed an unrecognizable lump of tissue at home, and probably bled and cramped some, as normally happens. Obviously, anyone who has read our story knows that is NOT what happened to us. Our "miscarriage" was the loss of two perfectly-formed, tiny human beings, each with two tiny shell ears, ten tiny fingers and ten tiny toes, after induced labor and delivery in the hospital maternity ward.

And herein, for me anyway, lies the struggle: how do I validate the loss of our precious daughter and son as the tragedy as it was for us without either minimizing those who had an earlier loss OR risking the wrath of those who lost their babies further along in pregnancy than we did?

Quite honestly, it feels like a fight...and I’m tired.  I'm quite sure a first trimester loss is very difficult, very sad, and even completely devastating for some. Understand, though, that Paul and I pretty much EXPECTED to lose our pregnancy in the first trimester. Think about it...why would we, aged 37 and 40, who had been through HELL to conceive over a 3.5 year period, knowing the risks of genetic issues with my older eggs, ever expect to have that first, hard-earned pregnancy last past the first trimester? I'm sure we would have been disappointed and sad had our pregnancy ended in an early miscarriage, but certainly not surprised.

Instead, we carried the twins into the "safe" zone. We were fully in the second trimester. We'd learned a week and a half earlier that we'd conceived babies who screened as close to normal as possible for a woman my age. (The risk of Downs Syndrome, Trisomy 21, in a 37-year old woman carrying twins is 1 in 127 (1 in 255 for singleton births). Our daughter scored 1 in 749, and our son scored 1 in 1049, which are unheard of odds for someone my age.) Due to the riskiness of the pregnancy and the fact that we were so well cared for by our fertility doctor, we'd had SEVEN perfect ultrasounds. Most expecting couples will never have the opportunity to peek at their healthy, thriving, growing fetuses so many times during pregnancy. Their little arms and legs, their abdomens and heads had been measured and showed two little beings growing well ahead of schedule. We didn't know things could go so wrong, so fast. We didn't know that there is no "safe," that second and third trimester losses, while "rare" statistically, do happen more often than one would think.

In the last few weeks I've had to go back into situations with people - mostly women - who knew we'd been expecting twins and had learned of our loss. Walking into those groups, I've felt anxiety because I'm never sure how I'll be greeted. Most often I receive silence, neither an acknowledgement of the pregnancy or the loss. As I've heard many times before from other bereaved parents, the silence is deafening, and that couldn't be truer. Whether it comes from folks close to us or from our wider circles, it's painful and reaffirms our fears that our babies are going to be forgotten. But then I hear, "Miscarriages are hard, but don't worry, because 95% of women who miscarry once go on to have a healthy pregnancy," not realizing those stats only really apply to first trimester miscarriages. Worse still, "You’ll be back to normal in no time," not realizing that yes, physically that may be true, but Paul and I can NEVER be normal after having to decide the fate of our beloved babies while they were still both very much alive, knowing they'd be way too early to ever survive...or frankly, that my cervix, because I labored and delivered vaginally, will always be that of a woman who has given birth, never of a woman who hadn't. Or, "There was probably something wrong with them, so it's for the best," when in fact they were perfect...it was MY body that failed. Then, over the weekend, I was faced with this, said in a bitter tone: "At least you didn't lose your daughter at 41 years old." I wanted to scream, but sat there stunned instead. At least that woman HAD 41 years of memories to hold close. All we have are several sets of ultrasound photos, and 14 short weeks of memories: of our excitement and apprehension, stressful doctor appointments, devastation of that fateful emergency room visit at 14 weeks 1 day, and then beauty and wonder of seeing, holding, kissing our perfect, tiny daughter and son. We didn't get a chance to learn of their personalities, to see who they would resemble, to look into their eyes, or have them hear us say how much we love them.

Taken together, the sum of these comments have left me feeling battle scarred and afraid of attending most social functions lest my heart be injured yet again. I'm comforted and supported by other mothers from both our in-person and online support groups who lost their babies later than we did but never make us feel compared to or minimized. They have accepted us where we are and I hope they know we do the same for them. Our stories are very different, and yet the underlying pain is the same. I've also found a few women who had losses close to the same gestation as ours, and that's helpful, too.

Devan wrote, "There is no comparison in grief." I would add, "There shouldn't be...but it's there." We all hurt so much and so want and deserve to have our feelings validated. Yet, because our experiences are inherently so very, very different, we almost can't help but step on one another in our fight to be understood. In the end, though, we are all grieving parents who went through nightmares, miss their babies, and are trying to figure out how to carry on.


  1. I HATE the term miscarriage for you too. You gave birth to two perfect little people and not to lumps of tissue. As someone who made it to 40+ weeks I think you should be able to say stillbirth too. I really wish there were more terms to define different time periods in pregnancy...there is not a one size fits all! I have a seriously problem with Addi being refered to as a "fetal death".

    It still makes me crazy that people think that because Addi died that I didn't have to give birth to her...HELLO, fully formed babies don't just disappear! I think we will always feel like we have to defend our babies and our stories.

  2. I wrote a similar idea that you can't quantify grief or loss a few months ago. I often feel like a cheater in the stillbirth world as my daughter died just past 24 weeks (barely a stillbirth according to many parents) and then wasn't delivered until 29&6 to give her twin brother as long as possible...


What are your thoughts?