Author: AmandaRW

Words have meaning. As someone who writes, even if just as a hobby like this blog, I know that. But words have great important to me in my day job too. As a medical librarian, I speak daily in the language of MeSH, or medical subject headings. MeSH is just one example of a controlled vocabulary, and there are lots of them in medicine alone. Controlled vocabularies ensure that everyone is speaking the same ‘language’, so we’re all clear on what we’re talking about. They also show relationships to other concepts and can demonstrate how two ideas are linked together. If you’re a word nerd, this kind of thing is fascinating! The words we use are one way to frame people’s thoughts about an idea.

Let’s talk about three words that mean the same thing:

• Miscarriage
• Spontaneous Abortion
• Early Pregnancy Loss

All these terms are talking about the same thing: “The expulsion or removal from the womb of a developing embryo or fetus, spec. (Med.) in the period before it is capable of independent survival, occurring as a result of natural causes.” Or “The spontaneous expulsion of a fetus from the womb before it is viable; an instance of this.” Or at least, those are the Oxford Dictionary’s definitions.

I’m willing to bet each of these terms evoked a different emotion in you, and you probably have your own term that you prefer to use. What are the pros and cons of each term?

• Miscarriage

Miscarriage is usually the one most laypeople use, and for many it is the preferred choice. When you tell someone you had a miscarriage, they understand and are familiar with what you’re talking about. The downside to this term is that it minimizes the seriousness of what is taking place, and puts all the blame on the mother. She “miss-carried”, or didn’t carry her baby properly. Using the term miscarriage can lead to people thinking that pregnancy is something wholly within the mother’s control.

• Spontaneous Abortion

Spontaneous Abortion is the preferred medical term, and is different from the term Induced Abortion. Because of this, a lot of women, especially those who identify as pro-life, hate this term. Of course, that can also be a benefit, because from a physiological perspective, there isn’t a difference to your body. Spontaneous abortion also sounds like serious medical issue, in ways the other two terms are not. Even the word spontaneous has positives and negatives. The positive is that it doesn’t blame the mother. If it happens ‘spontaneously’, it can’t be controlled.

On the downside, because it is ‘spontaneous’, there isn’t much you can do to prevent it. It feels a little like shrugging your shoulders and giving up. The term spontaneous abortion also reflects the historical difficulty in classifying abortions before they became legal. A woman who came into the emergency room bleeding from a pregnancy loss, she would likely say it was spontaneous, even if that wasn’t true, to avoid being prosecuted. Doctors would not always be able to tell the difference (remember, from a physiological perspective, your body goes through the same thing). However, over the past 20 years, increasingly doctors and midwives are moving away from using this term, and are choosing to use miscarriage.

• Early Pregnancy Loss

Early Pregnancy Loss is the last of the three terms, and my personal favourite. Just like spontaneous abortion, it doesn’t suggest that the mother caused the pregnancy to fail. The words “pregnancy loss” gives a sense of continuity with later pregnancy loss rather than abortion. You have a lot of similar feelings when your pregnancy fails, whether it is at 10 weeks or 39 weeks. (I had both, and they were very different experiences!) The downside to this term, much like miscarriage, is that it tends to minimize the seriousness of the issue. Loss is something that happens to car keys, or your phone, not your baby! But despite this downside, it is the term I find most comforting.

I decided to write to the National Library of Medicine to see if they were willing to change the term. As proof, I explained that doctors and other health professionals are moving away from spontaneous abortion and calling it miscarriage. I also explained that women may not like the term miscarriage because of the suggestion that miscarriage is their fault. And I got a response. In 2018, they will change the term.

This isn’t a moment too soon. For perspective, it was only in 2010 that they changed the term Conjoined Twins. Before, we called them Monsters.

This post first appeared on Still Standing Magazine.

I love This Is Us. When I heard there was going to be a stillbirth depicted on a major network show, I was excited about it! It is so rare to see stillbirth even mentioned, whenever it is part of a story arc, I am eager to see if the portrayal is real. How well do the actors manage to show the difficult emotions? How well do the writers do in showing how all encompassing grief can be?

As a LAMB mother (that’s Loss of All in Multiple Birth), I was disappointed to see how Rebecca’s triplet pregnancy was portrayed. The reality is that even today, as recently as 2014, triplets have 10 times the rate of stillbirth than single babies. In 1980, when the show takes place, the Pearsons would not have been left to go into labour naturally. She would have been on bedrest, in hospital. They also would have been woefully aware of how lousy their odds were. Some research has estimated that 40% of triplet pregnancies end in the death of at least one child. Nothing close to the happy-go-lucky images of multiples we usually see.

To be fair, there are many things This Is Us has done well. An earlier episode had the Pearsons crying in one another’s arms as they missed their lost baby. In those rare times stillbirth is mentioned, too often it is forgotten in the next episode. Worse, women who’ve had a stillbirth are often shown as completely unhinged and dangerous. These are the women who kidnap kids or murder other mothers (like in The Hand That Rocks The Cradle!). At least in This Is Us, the stillbirth is both a severe blow to the couple, and still survivable. The character of Dr. P also does a realistic portrayal of grief.

If you’re American and reading this, you won’t be familiar with the British soap, Coronation Street, but you don’t know what you’re missing. A recent story arc in this soap has the character Michelle lose a baby in the second trimester. While the writers have done a great job, credit really must go to the actors who play Michelle and her husband Steve, as this story was close to their hearts. Both these actors (separately) have had second trimester pregnancy losses, which makes their portrayal all the more poignant.

 

Of course, television is not real life, and never can be. In 22 or 48 minutes, which is the length of a standard television show, you couldn’t begin to show the hard ups and downs of life, but especially the downs. How many times have we wanted to change the channel on our own lives? To turn off the grief and cut to commercial, even if only for a few minutes. But there are still 24 hours in each day and even in the darkest moments of grieving, we do not get a rest. I’m still grateful for television that seeks to show stillbirth as something real, something tragic and something that can happen to anyone.

Have you seen an example where television has got stillbirth right? What about where they got it horribly wrong? Let us know!

PS. For American viewers who might want to see the scenes.

This post first appeared on Still Standing Magazine.

There was nothing out of the ordinary about this one gravestone. When I go through my cemetery walks, I love looking at the names of as many people as I can, but this one was unusual. It made me catch my breath. “Killed in Action at Mons, November 11, 1918.”

My God, that poor boy!

And at 22 years old, I can only see him as a boy. He was a student at the very same university where I teach. A young man on the cusp of starting life. And there, mere hours before the end of the war, he was killed. How deeply, deeply devastated his parents must have been, knowing that if their son had managed to hang on just a little bit longer, he would have been safe at home with them. But instead, he is buried in a far-away cemetery, and his parents have added his name to their memorial.

I live in a military town, and there were Silver Cross moms in the mother’s group I attended when my sons first died. Being a small town, there wasn’t a separate baby loss group at the time, so all of us mothers met together and drew comfort and support from one another at such a horrendous time. We couldn’t begin to say who had it “worse”. The mothers who lost their children at war had the pain of a very public death. Their sons had their pictures on the news and in the papers. Other mothers lost a child to suicide, and suffered the agony of feeling that they should have known the signs. There were mothers who lost a child like mine, at birth or soon after, and felt the pain of not knowing who that child would have been. But we all knew we were hurting and we needed each other. We needed each other to understand that there was this gaping wound in our hearts and that we wanted to know there was someone who would just hold us tight while we cried those bitter tears.

I see that young man who was so close and yet so far from coming home much as I see my own sons. They were 36 weeks and 5 days gestation when they died. I was scheduled to be induced in just 2 more days. Why couldn’t they have held on just a few hours more? Why were they so close and yet so far? Like these other parents, I’ll never know why, and I’ll always be haunted by the difference just a day can make.

This post first appeared on Still Standing Magazine.

I wore my favourite black dress with a jacket over it, even though it was unbelievably hot for the end of September. The dress was pretty much held together by safety pins, so I really had no choice. I had bought it as a treat to myself just a few months before, in the height of summer, when I thought this little black dress would make a versatile outfit for any occasion.

Which is just what a little black dress should be! You can wear a little black dress with a jacket and pumps and look ready for a job interview. You can wear it with a killer pair of stilettos and your best jewelry and look ready for the red carpet. The little black dress is celebrated in fashion because it is classic and timeless yet also modern and sophisticated. On this hot day, I was accessorizing it with safety pins.

Because damnit, what else was I going to wear to my sons’ funeral? My body was an absolute mess, with an extra 55 pounds (okay, 12 of those were my babies, so 43 pounds). My breasts were engorged and felt disgusting. I had wiggly bits where I had never had them before. My skin was stretched and sagging and made me feel grotesque. At the time, I hated myself and hated my body. I blamed it for failing my sons. I let them down. I killed them. For the past couple weeks of my pregnancy, I only had a couple outfits that still fit. This wasn’t one of them, which was why I needed the safety pins.

Related: Body Image After Loss

In the keepsake box I have for my sons, I have two items of my own clothing. One is a t-shirt that reads “My pod has two peas”. Another is this dress. I brought it out only one other time. When I was pregnant with my rainbow daughter, a colleague died very suddenly and I put it on again for her funeral.

My sons died in September. For the first time, I have a work commitment I just can’t get out of on their birthday. It is making me anxious. Every year, I am drawn back into grief at this time. While I probably appear to the outside world as being normal, it isn’t quite true. Just look underneath my protective outer layer. The truth is, like that little black dress, I’m held together by safety pins.

This post first appeared on Still Standing Magazine.

 

Another one came up today. I wasn’t expecting it, unlike some of the others where the dates are imprinted on my mind. But there I was, smiling back at myself, with my mother and sister smiling back too. I look hot and tired but still happy. My sister is glowing, which is ironic, because she’s the one who’s sick in the picture. My mom looks young. And of course, she was 9 years younger than she is today.

The picture was taken at my baby shower.

I have just finished opening gifts for babies who would never get to see them.

My sister came in for a surprise visit. She lives half-way around the world and wanted to be there for this special day, knowing she wouldn’t be able to make it when the babies are born. She was sick, waiting for the call from a bone marrow donor and didn’t know if she’d be able to travel for a while. Still she wanted to be there for me.

It was a great shower. My best friend put it on, with cute cupcakes for eating and so many good friends and family around. We laughed, and played silly games. We joked about how big the diaper bag was and how much I’d have to carry. We had a really good time.

But as the memories come up on Facebook today, I’m not sure how to feel. Sadness, definitely. I so desperately wish things hadn’t turned out the way they did. I can’t believe I was so happy when less than a month from that picture, everything was shattered. Happiness, a little. My baby shower really was a great day, and I probably wouldn’t remember it as well if my babies had been born alive. The fact that this was one of the few happy celebrations of my sons makes it extra special. I’m not struggling to remember who was there, or whether that was some other party we had for them.

Related: Things you don’t forget

In the nine years since that baby shower, there have been many other celebrations, as well as some sad moments. Friends have gotten married, had babies of their own. There have been 40^th birthday celebrations and family reunions. Some have divorced, or split up with boyfriends, or never got to have children. And despite my last post, most of my friends have stuck with me through all of it! My sister has been in remission five years, thanks in part to the anonymous donor who saved her life the same day my sons lost mine.

So, bring on those Facebook memories. Happy memories. Sad memories. And everything in between. They are all part of this beautiful journey of life and I will live through it all in honour of my sons.

This post first appeared on Still Standing Magazine.

Go ahead, unfriend me.

Don’t think I won’t notice. I’ve seen your posts too, the ones that give platitudes like, “Avoid negative people,” and, “Do not allow toxic people to turn you into one of them.” I know if I were to confront you, you’d say something about how you need to take time for yourself, about how dealing with me is exhausting and about how my grief is just too draining right now. I know you’ll say something about how it has already been six months, or a year, or whatever since my child died and about how you think I’m just not coming to terms with it. So do it. Unfriend me.

Grief lasts far longer than you anticipate. Some would argue it even lasts a lifetime. I know I’m not as happy as I used to be. I know I talk about my child a lot, and that it makes people really uncomfortable. I can see your reaction, how you look away, try to change the subject and avoid looking at me. But what I need you to understand is that this is NORMAL. Read that again: N-O-R-M-A-L. The space in my heart that my child takes is still empty and always will be. Having another baby won’t solve my problem. Whatever I find that heals me, and it is different for every person, I guarantee it won’t be on your timetable.

Do you really want to be a positive person? Do you really want to make a difference in this world for good? Then stop running from ‘negative people.’ Don’t respond with platitudes or cutesy sayings that fit in a meme. Instead, try giving more hugs. When I’m sad, hold me, pass me some tissues and be a shoulder to cry on. It isn’t your job to ‘fix’ me or to make me laugh again. The only thing you need to do is be with me in that moment and know that when I am ready to laugh again, I will.

If you can’t bring yourself to just be with me, then unfriend me. I don’t need negative people in my life either.

This post first appeared on Still Standing Magazine.

Hello little child.

You don’t know me, but I’m here to visit you. Nearly 100 years ago, you came and left this earth in just a day. Your parents loved you. I know this from the headstone they have placed here, which must have cost a lot of money. I know your parents loved you because they are buried right beside you. I know your parents loved you in the way that every mother who has lost a child knows this.

Many generations have come and gone since you were here. There is likely no one alive today who knew you, or even knew of you. But as I walk through this cemetery, I stop and sit for a minute to say hello, because I think your mother would have liked that. She placed this headstone here so you would not be forgotten. Mothers who have lost a child are terrified that their child will be forgotten. I come by to ensure that you are not. Your name is not engraved on this stone. Maybe you were never given one. If you had a name, I would write it now so it could be immortalized to the internet. Your parents could not have even imagined the internet! But instead, I will give you the gift I have: the gift of time.

Little child, you were loved. You were missed. In your few minutes or hours, you played a role in humanity that deserves recognition. So when I come to the cemetery I will stop and pause at each child’s gravestone.

Just to say hello.

This post first appeared on Still Standing Magazine.

3287.

That’s the number of babies that are stillborn. Every. Single. Day.

2.6 million.

That’s the number of babies stillborn in 2015. Or at least, that’s the best estimate. You see, researchers don’t know exactly how many babies are stillborn each year, because not every stillbirth is recorded. In many countries, barriers to accessing healthcare and low value placed on women’s health means stillbirths are not even counted.

But we mothers know differently. Our babies matter. They need to count. Let’s change that.

1. End the silence around stillbirth. Tell everyone you know that stillbirth isn’t something that happens to other people in other places, and it isn’t something you recover from in a week or a month. In countries like Canada, the United States and Australia stillbirth rates are uneven. You are twice as likely to have a stillborn baby if you are African American (US) or Aboriginal (Canada and Australia). Other women at higher risk include immigrants and women of lower socio-economic status.
2. Globally, too many women lose their babies during labor, due to lack of access to trained birth professionals. Support initiatives to improve education for midwives in the developing world.
3. Educate. Educate women about the risks. Educate women about the importance of health care in pregnancy and how to reduce stillbirth. In the United States, the biggest risks are smoking, obesity and maternal age (both older women and teenage moms have higher rates of pregnancy loss). We are far too afraid to say anything to women thinking about becoming pregnant, because they might be offended or scared. This taboo has to stop.

And one more thing. Join the campaign. #EndStillbirth

Last month the Lancet launched a special issue on stillbirth. The Lancet is one of the top medical journals in the world. It is read by health care professionals in every country, in every discipline. This matters. Over the next little while, I’ll be reading these articles in more detail, with a goal to making the research around stillbirth easier to understand for mothers like you and me. Together, we are a powerful group. Because today there are 2.6 million women who lost a baby in the last year, and our voices are strong.

This post first appeared on Still Standing Magazine.

My son is a noisy breather. No big deal, right? But maybe he has enlarged adenoids, or maybe it is asthma, or maybe he stuck a little bead up his nose when I wasn’t looking. He’s three; they do that sort of thing.

But you have no idea the amount of stress this is causing me.

For any other mother this is an easy decision. Trust your instinct! Take your kid to the doctor. Sure, it might be nothing, but at least you’ll know.

But I’m a mother who has lost a child, so this is not an easy decision. I don’t trust my instinct, because my instinct has failed me. Once I was in perfect tune with my children, so much that they were a part of me. With every breath I took in, with every heartbeat, my body provided them with nourishment. I could feel every hiccup. And I still didn’t know that inside me, they were dying. Not until it was too late.

So now when my children are sick, I don’t trust that I will know when it is serious enough to need medical attention. If I take them too often, will I be dismissed as the crazy woman who brings her kid in for every sniffle? Will my overprotective parenting scar my children for life because they were never allowed to just be kids? Or are they really sick, dangerously sick, and I just can’t see it?

My doctor reassures me. He reminds me that I am his patient too, so my mental health is important to him. He also tells me that often when a mother is talking about instinct, what she is really noticing is a change in her child’s behavior. This is what doctors focus on too. Is my son happy, playing normally, eating normally, getting into the usual mischief? Then he is either completely fine, or it isn’t something serious. Children who are very sick do not want to play, they do not want to eat anything (even cookies), they have trouble getting out of bed. My son doesn’t have any of these issues. He’s happy, he runs around like a crazy kid, he tries to jump off my furniture. I can relax.

Need a reputable source for health information? MedlinePlus is created by the National Library of Medicine and contains only health information and links that have been carefully selected by professionals. Another great source is KidsHealth.org, which is created by the Nemours Foundation and also contains great information written with parents in mind. Both these tools also have resources in both English and Spanish, and MedlinePlus has some information in other languages too. Both of these are better places to check instead of second guessing yourself with Dr. Google!

This post first appeared on Still Standing Magazine.

Earlier this month, I got the chance to attend the International Stillbirth Alliance conference in Vancouver, Canada. It was incredible! As someone who goes to scientific conferences occasionally for work, I cannot tell you often enough how incredible it was. First of all, it is very, very rare to have a scientific conference that is open to patients. Whether it is cardiology, or nursing or my own profession of information science, we talk a lot about the people we are serving, but rarely do we invite them in the room. This conference was different. About one third of the people there were bereaved parents. For one woman, her loss was over 30 years ago, but she wanted to be there to hear what research had changed in the time since her loss. For another couple, they lost their sweet baby just 7 weeks earlier, and it was obvious that the grief was still so raw and painful. I don’t think they stopped touching each other the whole time, because they knew that if they did, the other one would fall. But in truth, it was a bit of a lie when I tell you that one third of the attendees were bereaved parents, because it was actually higher. Almost every researcher began with “I’m Dr. X and I began researching stillbirth after my own child was stillborn.” The remaining third? Midwives, doctors, nurses, social workers. People who care for us every day, who need more insight into how to best care for parents of stillborn babies.

So what did I learn? Too much to tell you about in one posting, and I’ll be adding more as the research is published and I can delve into it further.

But one impression that stuck with me is the problem of blame.

As mothers, we often blame ourselves. Somehow we feel that the loss of our children is our fault. Doctors too often blame themselves, which is why you might feel they are avoiding you after your loss. They are! Even if there was absolutely nothing they could have done differently to change to outcome, they carry some guilt about the outcome. Sometimes of course, our defense mechanism is to blame one another. Doctors take the feeling of guilt away by looking at “maternal causes”, and we mothers take the feeling of guilt away by blaming our doctors for poor decision making. It came to a head in one poignant question for me, when a researcher was talking about how he found that obesity raised the risk of stillbirth. Even just being overweight raised the risk. He was wondering about how doctors could be better at having the conversation with women about their weight before they even become pregnant, and whether we should look at inducing women who have a BMI greater than 30 at 40 weeks, instead of waiting until 42 weeks. And one brave, powerful woman stood up, cleared her throat and told him exactly how hard it was to be an overweight woman who saw that this was a contributing factor to her son’s death on the autopsy report. Having patients in the room, working right alongside researchers, changes the way our stories are told, and changes the perspectives of the researchers.

It is so incredibly powerful.

Blame, both of ourselves and of others, is something we need to get past, if we hope to prevent future stillbirths. We need to embrace difficult conversations, so that every preventable death can be prevented. That can be hard, when the grief is raw, when the wounds are fresh. I’m so glad that ISA is committed to doing that, and to bringing us into the conversation.

Do you have ideas for how we can further the conversation, to work with researchers and doctors on preventing stillbirth? If your autopsy report listed “maternal factors” how does that make you feel? Should doctors be doing more to help women quit smoking, or lose weight, before they become pregnant? After they’re pregnant? Let us know your thoughts!

This post first appeared on Still Standing Magazine.