The Language of Pregnancy Loss
A set of questions pertaining to everyone who has suffered one or more losses–from chemical pregnancies and early miscarriage to ectopic and beyond to late-term loss and…here is where our language is lacking…death of a child soon after birth.
Actually, our language is lacking left and right. We use the term “failed cycle” to describe both the failure of IUI or IVF. But there is a key difference. With IUI, fertilization may or may not have taken place (obviously, implantation has not happened either, but that’s a different story). But with IVF, an embryo has already been formed. You are, in a way, pregnant during every IVF cycle. It’s just a matter of implantation. So what is the word to describe this type of loss?
What do we call that child who is born alive but dies soon after birth? We have another term–stillbirth–to describe a child who wasn’t born alive, but why don’t we have a name to honour those who are born alive and die soon after?
Are there words connected to loss that bother you–especially medical terminology (habitual aborter comes to mind just because those who haven’t suffered a loss may hear habitual aborter and think it is something entirely different).
These next two questions ask how important is it to you (on a scale from 1–10) that people use the correct terminology to describe your loss?
1. How important is it to you that they differentiate and use the term miscarriage if the loss was prior to 20 weeks or late-term loss after 20 weeks (on a scale from 1–10; and explain your answer if possible)?
2. How important is it to you that they use the name of the correct type of loss (ectopic, blighted ovum, molar, chemical, stillbirth, etc)? Again, the scale is 1–10 and it would help if you could explain your answer.
Kotapress has a fantastic online dictionary concerning loss, but depending on your religious beliefs or how you view pregnancy loss, not all people would be comfortable with terms such as angelversary. I started using terraversy (a combination of terrible and anniversary–with obvious connections to the idea of in-ground imbedded in the word) to describe those terrible days–date of death or lost due date–just because it doesn’t have religious connotations. And people process loss differently–I think it’s important to be inclusive so that however you view your personal loss, you can still have language to describe what happened and how you feel.
A huge thank you in advance to everyone who has already helped me with this chapter by providing interviews or sharing your stories of loss. Writing this chapter…just sucks. Whereas in every other chapter there is an element of hope–yes, things can go wrong, but ultimately, there is hopefully a child at the end of the path–this chapter…well…I don’t think I need to finish that sentence for you to know what this chapter is about. Thank you for being open to answering my dozens of questions–I want to get this right so that it serves the greater community and doesn’t just speak to my personal experience. And some of these losses are outside my experience–such as late-term loss. And without your stories, I wouldn’t be able to do this chapter justice.
More questions to come. This is just a week of questions, questions, questions. And feel free to email your answers directly to thetowncriers@gmail.com if you don’t wish to post them in the comments section.
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Updated at 2:20 p.m.:
Joan added this question in the comments and I thought I would move it up here:
Do you differentiate between a chemical pregnancy and a miscarriage?
She explains: There seems to be disagreement even in the medical community. A midwife in my OB practice told me a chemical pregnancy “doesn’t count” as a miscarriage. My RE said it absolutely does. Does calling it a “chemical pregnancy” make you grieve any less? In my case, I think it did, but losing the chemical pregnancy was much more painful physically than the miscarriage I had a year and a half later at 6.5 weeks. Go figure.
24 comments
For me,
1. How important is it to you that they differentiate and use the term miscarriage if the loss was prior to 20 weeks or late-term loss after 20 weeks?
A 10. My pain (in not being able to get past 9 weeks now) is very different from those who have unfortunately had a late-term loss. I never felt my babies kick, move. I never got to hold my babies. I never got a chance to take pictures of my babies. I never got a chance to say a proper and formal goodbye to my babies.
I cannot say which is worse to have to go through – I don’t think anyone really can. But, even though there are some feelings that are the same, there are many feelings that are different.
2. How important is it to you that they use the name of the correct type of loss (ectopic, blighted ovum, molar, chemical, stillbirth, etc)?
A BIG 10! I HATE, HATE, HATE habitual aborter. And Missed abortion. To me, abortion is a choice – regardless of right or wrong to those who are pro-life or pro-choice. I DID NOT have a choice in my miscarriages. And, to be called Habitual Aborter is very offensive. I WANTED these babies so much…to imply my body aborted them is an insult.
If you have breast cancer, you have breast cancer. If I had a blighted ovum (my 11/05 loss), I had a blighted ovum.
Differentiation not only clears up the factors surrounding the losses, but it also brings a little bit if healing to the soul to know I didn’t “abort” my babies.
1. What do we call that child who is born alive but dies soon after birth?
In my bereavement group, children who die soon after birth are simply called “children who lived for X days/hours.” You could also use neonatal or perinatal loss, but it seems to me that the parents I know whose children lived for a few hours or even a few months don’t need a special word because their parenthood is recognized by society.
The exception is when a baby is born alive before 24 weeks (and only lives for a few minutes or hours because no resuscitative measures are given), in which case many people don’t recognize that baby as a child and still refer to that baby’s loss as a miscarriage.
2. Are there words connected to loss that bother you?
I hate the term “fetal demise.” And I actually don’t like the word miscarriage because it refers to the medical state rather than the emotional loss, and because people apply it inappropriately.
3. How important is it to you that they differentiate and use the term miscarriage if the loss was prior to 20 weeks or late-term loss after 20 weeks?
As mentioned above, I don’t like the word miscarriage at all, but I really object to people applying it to losses after 20 weeks, and especially where the child was born alive.
4. How important is it to you that they use the name of the correct type of loss (ectopic, blighted ovum, molar, chemical, stillbirth, etc)?
I think it’s important for your health care practitioners to be able to name the type of loss in order to best address any continuing health issues. However, I don’t make a distinction between my mid-trimester loss and other people’s earlier (or later) losses. To me, a loss is a loss.
10 on both. For all the reasons Tina said.
I think you missed a question – Do you differentiate between a chemical pregnancy and a miscarriage?
There seems to be disagreement even in the medical community. A midwife in my OB practice told me a chemical pregnancy “doesn’t count” as a miscarriage. My RE said it absolutely does.
Does calling it a “chemical pregnancy” make you grieve any less? In my case, I think it did, but losing the chemical pregnancy was much more painful physically than the miscarriage I had a year and a half later at 6.5 weeks. Go figure.
I truly do wish that people in general knew the appropriate terms to use. I think that goes beyond just infertility, though. My dad is a nurse anesthetist and struggles with being referred to as an “anesthesiologist” by patients. To him (and the anesthesia world) the differences are absolute and he has a hard time knowing that the general public isn’t informed. So I wish that the correct terms for infertility could be used by more people, although I understand that this is important to me because I live in IF World. It always seems to go back to awareness.
As far as chemical pregnancies and miscarriages go, I guess I’ve always considered a chemical pregnancy as a kind of sub-category of the Miscarriage Umbrella. I can’t believe that a professional would refer to anything with such indifference as to say that it “doesn’t count.” That’s below the belt for sure.
I do agree with Joan on the Chemical Pregnancy issue:
Do you differentiate between a chemical pregnancy and a miscarriage?
Probably not. My doc termed my 1st miscarriage as a miscarriage, not a chemical pregnancy when, “technically” according to medical terms, it was probably a chemical because the lost was at 4 wks 1 day. But it was my doc who told ME it was a miscarriage, so I count it that way.
I agree with Kay/Hanazono in a way about the term miscarriage. It is a medical state and does not at all emcompass the emotions involved. It is hard to mourn a loss to begin with, but when it was one that was very short after birth or lost before/during any birth, there is much more to deal with than just the loss – there are questions of what did I do wrong, what could I have done differently, all of the what if’s…
I’ve never experienced a pregnancy loss, but I think it’s important to use correct terminology.
The book “Unsung Lullabies” refers to an IVF cycle that doesn’t result in pregnancy as “non-carriage” or “pre-implantation miscarriage.” The authors say that some researchers use those terms, as well.
I’ve never been pregnant (any kind) so I don’t know about miscarriage and loss. I can admit that I’m ignorant about all of the differences and correct verbage. I’m glad that you are talking about it because it gives people like me a chance to learn.
I wonder how many people I have upset over the years? I hope to not do that in the future – so thanks to everyone who is putting in their nickel’s worth!
Our only nibble of pregnancy in 25 tries resulted in a chemical pregnancy. We knew from the very first positive test that things didn’t look good since the numbers were so low, but as the days went by and the HPTs got darker we embraced our good fortune only to find out it was all over. Our clinic didn’t even want to say I was pregnant, much less that I had had a miscarriage. When I complained about the language being used by the nurses, my RE called me with a long speil about chemical pregnancies and how if I hadn’t tested, I would just have assumed my period was late. Of course we’d done an IUI and he’d ordered a beta so his lecture seemed silly to me. When Af did arrive I didn’t cry or grieve at all.
It wasn’t until weeks later when discussing it with my OB that she called it a miscarriage and the tears flowed and wouldn’t stop.
I suppose there is a technical difference to all of the terms that matters in terms of medical treatment, but for me I’d have preferred to have it referred to as a miscarriage rather than some psuedo pregnancy, as if something other than the beginnings of pregnancy make measurable amounts of HCG.
Terms I can’t stand as it relates to miscarriage: habitual aborter and fetal wastage. As Tina already said, to me abortion is a choice, maybe a between a rock and a hard place choice, but still a choice. My miscarriages were not a choice.
As far as differentiating between loss before or after 20 weeks – that’s a tough one. One way I consoled myself during my miscarriages (both around 10 weeks) was by saying at least it didn’t happen any later, at least it wasn’t a 2nd or 3rd trimester loss, at least I didn’t have a stillbirth. I do think it’s important to differentiate, although I feel that can perpetuate the “her loss was worse than my loss because it happened at x weeks”. Loss sucks anyway you slice it.
As far as the type of loss – to me that’s most relevant when talking to your medical practitioner. It’s not important to me that people be savvy on the difference between chemical, molar, ectopic (although with ectopic there can be added complications that are relevant), etc.
It is important to me that health professionals do not use the word ‘abortion’ when referring to miscarriage or any type of pregancy loss. That was a big blow. Abortion in our culture means to get rid of an unwanted pregnancy… referring to a very much wanted failed pregnancy as an abortion is brutual. I wanted to smack the doctor who repeatedly said the word abortion to me. SMACK!!!!
With our 2nd IVF I had an early miscarriage. It really bothered me when I found out my mom was telling other family members that “it didn’t work.” I had to explain to her that we didn’t just have a failed cycle, I lost another baby. It hurt so much to have her not acknowledge our loss.
Personally I don’t think the general public needs to differentiate between types of losses. When that happens the public starts to believe there are degrees of loss (as in, “you only had a chemical pregnancy.”) A loss is a loss and it is painful no matter what you call it.
One of my pet peeves in terminology.:
What the hell is chemical pregnancy, people? Is it just a term to ‘cheer up’ the patient? Because a pregnancy is a pregnancy, isn’t it? Even if the fetus was misshaped or died early. So where does the ‘chemical’ come in?
Izabela
I wrote a post just after my first chemical pregnancy trying to figure out what to call it. The term “chemical pregnancy” makes me cringe – like it was a fake pregnancy, an artificial pregnancy, not real. I even cringed just then when I used the term above.
But I also don’t feel right using the term “miscarriage” because it sounds too dramatic for what happened, and I don’t want to step on the toes of those who lost more, I guess.
In my post, I settled on the term “very early pregnancy failure”. See here if you want to read more. But I sometimes find the term too ambiguous, requiring further explanation, hence I do use the term “chemical pregnancy” complete with cringing, so I can quickly express what actually happened.
On levels of pain – I don’t honestly find the “chemical pregnancies” any harder to deal with than a failed transfer. The embryo still died. It either died at a few days old, or a few weeks. It died. I also find a grief connected to embryos lost pre-transfer, and I have noticed that the grieving period is similar in length and intensity for all the stages of loss I’ve experienced so far. (Listen to me – so far…)
I guess I differentiate between an IVF and a non-IVF cycle, using the terms “failed transfer” for an IVF cycle as opposed to “negative cycle” when there was never any evidence of an embryo. I do think it’s an important distinction.
In the end, I think you have to find the language you’re comfortable with, and those around you should be advised to follow your lead, or ask for your specific direction before placing their own labels onto the situation.
If unsure (and pressed), I think “pregnancy loss” is the best phrase for any baby who died before birth. The word “loss” in that phrase seems very validating to me.
Bea
Oh, and I agree that a child who died shortly after birth be called a child, pure and simple. I have seen many who try to conceive following their loss number the lost child amongst their children (for example, if they lost their first, they will state that they are trying for their second, although they don’t have any living children).
(I guess you could apply this to losses before birth, but it happens less often.)
Bea
1. How important is it to you that they differentiate and use the term miscarriage if the loss was prior to 20 weeks or late-term loss after 20 weeks?
I would also give this a 10, even though I fall in a difficult category. I lost my child at 19 weeks. I don’t know if I felt him move, I felt something and some part of me still refuses to believe that it was him moving. I heard his heart, regularly. I saw him as a little baby on the ultrasound screen and I could feel his little personality slowly, gently starting to ineract with mine. He was very real to me and when people call it a miscarriage, it feels like a negation of all the memories I had of him. It feels like a belittling of my experience. I had to give birth. The hospital gave me a card with his tiny footprints and that was heartbreaking.
Maybe I resent it being called a miscarriage because of the attitude most people I have encountered seem to have concerning miscarriages. “Oh, it happens to a lot of women,” they say, “It will be fine next time, you will see.” There is very little acknowledgement of the pain and the grieving.
My only brush with pregnancy was a chemical one from our fresh IVF cycle. When I was in the midst of it, I thought of it as a miscarriage – I grieved accordingly. Though as time as has passed, I have wondered if my grief was less about losing a baby and more about the fact that IVF failed. I certainly never really got “attached” to the baby – I was just barely getting used to the idea that I was pregnant when I started bleeding at 6w.
The biggest disconnect for me, though is that my doctor actually thought of the whole debacle of it as an IVF success, even though there was no baby to show for it. He said that it proves that I can get pregnant, that implantation CAN occur.
I personally think that a chemical pregnancy should be termed an early pregnancy loss or non-viable pregnancy. I liked that better than “chemical” – which to me suggests that there was no baby to begin with.
Actually, sorry – hogging the comments – but that last bit about failed transfers vs negative cycles I’m not so sure about any more. I know for sure there were never any embryos with us before IVF. I also know we can do all the ART we want. So a negative cycle isn’t as much a loss to me, as it is for some.
Bea
To answer the questions pertinent to me:
2. How important is it to you that they use the name of the correct type of loss?
I would say 3. I don’t really talk to anyone about my losses anyway (1 early miscarriage and 2 “chemical pregnancies,” i.e. very early miscarriages). I don’t expect other people to be informed or sensitive to the use of the correct medical name.
To answer the question Joan posed, I don’t really see why the medical profession differentiates between someone who has been pregnant for two weeks versus three weeks. The whole “you would have thought it was a late period” rings very false to me, because I always have very clear symptoms starting at the time of implantation, so I know I’m pregnant. As I told my RE today, I’d love to be one of those women in the tabloids who doesn’t know, and goes to the bathroom and a baby falls out, but that’s not the way my body operates.
I have a somewhat different view on early miscarriage than a lot of folks online, though. I would never name a lost embryo, and I would not call it an angel. I am always very upset when these losses occur, but I consider it a loss of my hope and expectation for a child, not the loss of an actual human being. In fact, a friend of mine (a medical student at that!) said “I’m sorry to hear about your baby” after I had my one “real” miscarriage — a blighted ovum that was discovered at about 5 weeks but not physically lost until 8 weeks — and I was offended that he called it a baby. So that would be a word connected to loss that bothers me.
I hate the word chemical pregnacy, although in my case my RE does not consider my mc a chemical, a lot of books do. I knew I was pregnant, I blew up like a balloon, so much so that people think I’ve gone on a crash diet. There was nothing chemical about it. I was pregnant pure and simple, and now I’m not. To act like it was some mistake of chemistry diminshes my grief and my loss and I hate it. I really hate the way some people say it so flippantly like I have no right to be upset because it wasn’t a real pregnancy. Well it was real to me.
I agree that chemical pregnancy isn’t a right name…when I had that “chemical pregnancy”, the doctor called it also “micro-abortion”…and I too think that abortion is too connected to “unwanted baby” to call a “very early pregnancy loss” (I liked that one, someone put it!) a “micro abortion”, it sounds like a kind of contraceptive method that caused a “micro abortion”…come on!!!
Anyway, I’ve always felt a little “cheaty” to say I lost a baby, because it was so soon (5 ww), but I really grieved. My illusion lasted only 1 ww, but there was indeed a broken illusion, so in those terms, I really feel I had a miscarriage…
I’ve been pregnant many times. 2 living healthy kids, 1 stillborn son with Trisomy 18, (who has a name, but not on the internet thanks!) and 2 late miscarriages, babies lost at 12 & 16 weeks. I also named those babies, because I had seen them so many times on the ultrasound and got their footprints and fought so hard to keep them alive.
All my other miscarriages I call very early miscarriages because I don’t feel like using the term chemical. For me, it just doesn’t feel right even though I was only 4-5 weeks along.
I do find actual names help me solidify the reason for my grief. Because I did lose something “real”, not just a “nothing”. A person, maybe not, but not nothing.
This probably makes no sense…
I don’t like the 20 week line in the sand, and find it very harmful. It doesn’t just relate to language but also to the treatment you recieve in hospital. There is no technical difference bewtween a woman losing a pregnancy at 19.5 weeks or 20.5 weeks. But since the legal line in the sand exists, one gets nothing and the other gets the gold standard of treatment. Meanwhile stillbirth and miscarriage are just words. And yet actual women are hurt in the process of picking categories and names.
As for bad language, how about incompetent cervix? A medically useless catchall term. Fetal wastage and prgnancy wastage are awful, but the worst really is abortion when used to describe a miscarriage. I am pro-choice and have to say that abortion is a political word with little or no medical meaning anymore.
A good alternative I’ve seen is RPL, for recurrent pregnancy loss, so that people who don’t want to use the term baby?
Almost as if someone that works for msn.com was lurking…
The main page for MSN has a revolving featured story tonight (10/12)- a video on surrogacy and a link for “miscarriage basics and questions.” The video is great, in my opinion, even if it did cause a few tears. And I had no idea that Meredith Viera had five miscarriages.
Sorry for the long links, I’m too tired to make hyperlinks work tonight…
article-
video-http://video.msn.com/v/us/v.htm?g=4FF5C68E-DAA7-4D46-93D7-70B94AB12D4D&t=m17&f=06/64&p=Source_Today%20Show>1=8618
I call my baby who died 20 hours after her was born just one thing – my son.
just kara here from kotapress — came across your mention of our dictionary and wanted tell you that I’d love to have your “terraversary” addition to the dictionary of loss — precisely because “angelversary” doesn’t work for everyone. Could make note on each word for readers to see the other word as similar/alternative, etc.. If you would want to contribute in that way, please email me thru the kotapress.com site!