Month: December 2017

We’re pretty excited! Joy at the End of the Rainbow was awarded second place in the American Journal of Nursing’s Book of the Year awards, in the Consumer Health category.

The American Journal of Nursing is one of the most influential scholarly journals in nursing, so receiving this honour for my self-published book is huge! I am honoured that the judges considered my book worthy of attention and that it has helped not just hundreds of women going through pregnancy after loss, but also the caring health professionals who seek to guide them through this difficult time.

Has Joy at the End of the Rainbow helped you or your patients? I’d be just as honoured if you left a review on Amazon, GoodReads or your favourite review site. None of this would have been possible without your support!

Chances are, sometime over the next few weeks, you have a social occasion coming up. The office holiday party. Dinner at Aunt Lucy’s, complete with your cousin’s jerky husband. A party at a friend’s house, where three of the other guests are pregnant. Oh, how I hate the holidays.

Even if most of the people you see are kind, caring, loving people – People who know that your grief is still raw, that this is a difficult time, that you’re still hurting – it seems that in every gathering there’s that one person who just doesn’t get it! Someone who can’t figure out why hearing details about Jessica’s baby shower is killing you. Someone who thinks you should get in ‘the holiday spirit’ and put on a smile! Someone who you probably secretly want to smack right now.

It’s ok! Here’s your handy coping guide for dealing with that person for the next few weeks. Christmas is hard enough.

1. You don’t have to go! Seriously, this is not used enough, but there is no shame in saying: “Hey, I’d love to, but….” Use whatever excuse you want! “I have the flu” is always good for this time of year, even if you don’t have the flu, but I’ll encourage you to get creative. “So sorry to miss your party, Jess, but Josh Duhamel is really having a hard time getting over Fergie and wants me to come over and eat ice cream and cry with him. Maybe next year?”
2. Always have an escape route. This is good advice for any scenario, but even if you do decide to go, there’s no reason you have to stay! If anyone gets up in your business about how you’re coping, why you’re still grieving or whether you even should be grieving, just flee like the place is on fire. If it is the host of the party giving you a hard time, shout out that you think you have food poisoning as you run from the room.
3. When someone gives you a metaphorical punch in the gut, it is so hard to come up with a sarcastic response right in the moment. I usually find my best sarcastic responses come to me around 4:30 in the morning, sometimes as much as 3 years after the conversation even happened! We know all the clichés insensitive jerks like to say to someone whose child has died, so prepare a few good lines in advance. But in all seriousness, it is best to only say them in your inside-the-head voice. Especially at the office holiday party. But be sure to post them here later, because other grieving moms could use a laugh!
4. Your best gift is to yourself – be kind. Holidays have a lot of traditions and it seems like if we’re not keeping up, we’re letting someone down. Christmas will come again next year. Next year will feel different. No, your baby still won’t be here, but you won’t be grieving in exactly the same way a year from now. Be kind to yourself by giving yourself permission to be sad, or angry, or to feel nothing at all. All those feelings are okay. No matter what anyone else says about them.

Researchers are always trying to find out how to prevent stillbirth. As a result, new findings mean we have to change how we think about our losses. I was just at the International Stillbirth Alliance conference and new research has come out that changes my thinking on the death of my boys. Several different researchers, doing very different types of research, all came up with the same conclusion: going to sleep on your back increases the risk of stillbirth. Since then, I have been racking my brain as to whether I may have slept on my back that night. With the passage of time, there’s no way I could possibly remember, although I do remember I slept well.

Managing Guilt?

So how can I cope with new information, with the possibility that it may have been something I did that caused my boys to die? It’s something I’ve really been grappling with. I mean, obviously if I had known the risks, I would never have done it right? Still, part of me thinks that isn’t true.

After all, until it happens to you, you really don’t think stillbirth is something that could happen. Yes, you know the statistics. I certainly did. I knew that twins were riskier, especially monozygotic twins like my boys. But it was always something to put in the back of your mind as something that happens to other people. You know, those ones who take real chances. Those ones who don’t love their babies as much as we do. Knowing statistics and acting on them still requires you to believe that you might be one of the unlucky ones. And we all take chances every day. I know that driving a car is risky, but I still do it. If we always thought we were going to be the unlucky ones, we’d be paralyzed by fear all the time, and that’s no way to live.

Sleeping on your back increases risk

So a bit more about the research: A couple years ago, some researchers in New Zealand wondered if something similar was going on with stillbirth as with SIDS. Was it possible that when a pregnant woman lay on her back, the blood flow was restricted to her placenta, causing her baby to not get enough oxygen? So they did something called a case-control study, a common research type for this kind of thing, where they compare women who’ve had a stillbirth (the cases) to women who haven’t (the controls). What they found was that women who had a stillbirth were far more likely to have slept on their backs the night they lost their baby than women who did not have a stillbirth.

But one study, even a reasonably large case-control study, is not enough proof. Researchers need to be replicate studies in order to be certain, otherwise we could potentially cause more harm. That’s what the three studies presented at ISA hoped to do.

New Research

Two of these are also done in New Zealand, from some of the same researchers, and they hoped to show physiologically how this might work. Ten healthy pregnant women were scanned using an MRI. The researchers wanted to know if they could see changes in blood flow depending how the woman was lying down. What they found was that that cardiac output (how efficiently the heart pumps blood) was the same in both positions. But when women were lying on their backs, the blood flow and diameter of the inferior vena cava were reduced. This would affect how blood flows back to the heart from the body.

The second group asked 30 pregnant women to spend the night in a sleep lab. They monitored their breathing and position while sleeping to see if there was a relationship between the quality of their breathing and their position. None of the women met the criteria for sleep apnea. However, the women didn’t breathe in as deeply when they were lying on their backs. Both of these studies show that it might be true that babies are not getting enough oxygen if mom is sleeping on her back.

A third set of researchers, in the UK, interviewed over 1000 women in another case-control study. They were asked about their sleep practices at three points in time. All the women were asked how they slept before and during pregnancy. Women who had a stillbirth were also asked how they slept the night before their baby died. Those who did not were asked how they slept the night before the interview. Women who said they had gone to sleep on their backs the night before were twice as likely to have had a stillbirth.  This study is problematic for the same reasons I can’t remember what position I was in when my sons’ died (guess what – your memory is horrible – it’s human nature!). Taken together with the other three studies, it starts to become clearer that sleeping on your back might not be a good idea when pregnant.

Conclusion?

So, if you’re pregnant again after your loss – don’t sleep on your back!

Worried about whether your own sleep position might have contributed to your baby’s death? I am. But, please remember that you did the best you could. You deserve to forgive yourself. I’m still working on it.

This post first appeared at Still Standing Magazine.

I’m coming up on an important milestone. And I’m going to be spending it in a heartbreaking place. Saturday, September 23^rd will mark ten years since Nate and Sam died.

10 years.

That very day, I’ll be at the International Stillbirth Alliance conference in Cork, Ireland. On the Saturday night, there will be a memorial service for all our babies gone too soon, at the beautiful St Fin Barre Cathedral. I can’t quite say I’m looking forward to it, although if I am to spend it anywhere, I can’t think of any place more wonderful. I’ll be surrounded by my sisters in sorrow. There will be plenty of other people around who understand. But they’re also all strangers.

I went to the conference in 2015, when it was in Vancouver. There I attended as a parent, listening to the talks and learning about research into stillbirth. This time I’m going as a researcher, and will be presenting work I’ve done on changing the language around miscarriage (to miscarriage, instead of spontaneous abortion, which I’ve written about before). It will be a whole different experience, and I’m not sure how it’s going to go.

I’m intimidated by researchers who have specialized in this area, people who have MDs and PhDs after their names! I’m not a stranger to research, it is my job after all, but this is a whole other element. Over time, researchers tend to get to know one another well when they work in the same field. You see one another at the same conferences, write papers together, give feedback on one another’s work. I’m not part of that at all. I move in a completely different circle. Even though I’ve written a book about pregnancy after a loss, Joy at the End of the Rainbow, I’m terrified of negative feedback!

And I’m doing it on one of the most emotionally charged days of my life. Will I be able to hold it together and be professional? Will I be taken seriously?

My husband will be home, with our living children. We won’t be together to bake a cake, to honour our sons together as we usually do. How will he manage without me? How will I manage without him?

I guess we’re about to find out!

This post first appeared on Still Standing Magazine.

I’m always conscious of writing on Still Standing Magazine about my children who came afterwards. Of my rainbow babies.

About half of women who have a stillbirth go on to have another child. But of course, not everyone does.

And Still Standing is for all of us who are grieving a child, whether the child was lost in utero or as an adult. So I’m writing this post knowing it will hurt so many of you, but also so I can be true to where I’m at, coming close to 10 years since my twins have died.

Trying to get pregnant after losing a child is hard. Emotionally hard, not just physically hard, although for me it was that too. Knowing when it is time to stop trying is hard.

I think for many women after a loss, there is always the sense that someone is missing.

Even though we know another child won’t replace the one who came before, there is always the sense that there’s room for another. Many of these complex emotions are what I was trying to get at when I wrote Joy at the End of the Rainbow: A Guide to Pregnancy After a Loss.

When I was struggling to get pregnant after the twins died, when I was having one miscarriage after the other, I found myself angry and frustrated at existing pregnancy advice books and websites. It seemed every single one of them assumed I was a first time mother! And, naturally, none of them address my difficult emotions around being pregnant and having another baby.

I didn’t want to be pregnant! I wanted to be done, with a baby in my arms. It was terrifying being in the ultrasound room, because I didn’t want to find out I had lost another baby. Yet at the same time, I was desperate to see so I could see for myself that this baby had a beating heart!

Why did all the pregnancy guides assume I was going to be happy? And would I want to bring friends and family to the event, or have a “gender reveal” party? UGH!

So feeling frustrated, I wrote a book of my own. I interviewed six fabulous, courageous women throughout their own pregnancies so I could get a broader range of experiences. And I ensured the medical information was valid and current and the best available research on pregnancy after a loss. I hope you like it. And if you like it, I hope you’ll recommend it to a friend, or your doctor, midwife or nurse.

This post first appeared on Still Standing Magazine.

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.