Childlessness and Pregnancy Loss

I listened to an interesting podcast the other day. Those of you who know me might be surprised - I definitely struggle with podcasts. In fact, I started to write an explanation, but have turned it into a post on A Separate Life this week. But this was one I had to hear. Because Loribeth featured on The Full Stop podcast, in a discussion that is very pertinent to me - Childlessness and Pregnancy Loss. Don't continue if you're not ready for this, or if you have difficult feelings around pregnancy and pregnancy loss. (Though I try to address these at the end.) You'll find the link here via  Loribeth's post about the podcast. And a warning: it's a tear-jerker!

As any regular reading of No Kidding in NZ knows, I had two pregnancy losses in my path to Otherhood, and then spent years participating in and moderating an ectopic pregnancy website, before I even thought of starting this blog. So I was interested to see what angle the discussion might take. Any limited time for four people to discuss a topic is, of necessity, going to limit the discussion itself. (In her post, Loribeth mentioned the "gazillion" things she wished she'd been able to say!)  We understand that. And there were some very interesting points. These are my comments on it.

First, the issue of silencing ourselves was raised. Loribeth has talked about this too, but I was thinking about it from my own perspective. Talking about loss seems to be largely taboo in our society. The whole "don't say you're pregnant until after the first trimester" really says "it doesn't count until you are properly pregnant." (I had someone say, "oh, it's still really early then" as if it didn't count, even though my nausea was very real. I'd announced my pregnancy early only to my family at Christmas, as they would have wanted to know why I wasn't drinking! But it was dismissed.) After a loss, the rule of no early announcement says, "we don't care about early pregnancy losses." People don't want to hear it. It's as if you're "not really pregnant" or, as a friend said to me, "you never had anything so there was nothing really to lose." So even when we have a loss, we are unable to talk about it. We are silenced. 

In ectopic terms, this too is incredibly dangerous, as it means a general lack of awareness by both family and friends, the women themselves, and their doctors. Women's early pregnancy pains or other symptoms are easily dismissed. I was lucky that I had a great GP, who wanted to monitor my HCG levels to ensure I was having a miscarriage. When my levels did not fall, but rose insufficiently, it was clear I was not - it was an ectopic pregnancy, which instantly means "danger." I've since seen many many women - one woman is too many - be told by their doctors not to worry, they're just having a miscarriage, only to end up in hospital with life-saving emergency surgery after internal bleeding, or needing emergency medication. I remember Bamberlamb telling me that, when presenting at hospital with symptoms of her third ectopic pregnancy, she had to ask the nurses/doctors for their names so her husband would know how to name if she died as a result of a ruptured ectopic pregnancy. It was only then that she got the help she needed. And it was only because she had been active on the Ectopic Pregnancy Trust Messageboard that she knew all the symptoms and what they meant - and knew them far better than the medical professionals at the emergency department.*

But, as the podcasters noted, we also silence ourselves. At first we do it out of self-protection, I think. I found I could talk about the mechanics of my ectopic pregnancies - the reality of the medical treatment, what implanted where, etc - more easily than the fact that I lost the future baby. Anything involving emotions would have set me off - I wasn't much of a crier before loss, but then the floodgates opened! So I preferred not to talk about it, except with a select few, or online, when you can type even when the screen is blurry through the tears. I also felt embarrassed and ashamed. I don't now. Not at all. But at the time, emotions are complicated. Protecting ourselves as we work through them is important self-care.

We also silence ourselves, trying to be sensitive to others. We don't want them to be uncomfortable, so we hide our own emotions and therefore our own experience. We don't want newly pregnant women to worry any more than they might. But in doing that, we are also not being honest about how it affects us, or the significant percentage of women who experience loss or childlessness. I find it interesting that it is often the grieving person who is forced to be the most sensitive to others. (Don't get me started!)

But all this silence is not entirely honest either. When we can cope, when we are ready, talking about loss openly is much more honest, both to our own experiences and our own relationships with others. It must help those who will come after us. Because there are always those who come after us, and knowledge is important, awareness is life-saving, and information is power. That's why I worked in the field (voluntarily) for years, and why I still try to talk about it openly when I feel it is appropriate and/or necessary.

Support, as Lori mentioned on the podcast, is something we take when we can get it. But often that support drops away, especially if people go on to have children and drop off the radar. She found that in her support group, and I found it also at the ectopic messageboards, as more and more of my friends went off and had their families, and disappeared. I didn't really belong there except in the anonymous moderator role. But my presence, like Lori's as a leader of her support group, was important visually, just to let people know we were okay. And then I found blogging, where I do belong, even if I live on the other side of the world from most of you. That's why I love this community so much!

Michael, of the Full Stop podcast, also talked about how "the ghost (of his and his wife's losses) continues to be with us." Their losses are around birthdays and Mother's Day, and that is hard to ignore. I can relate to that. I learned I would never have children at a scan on my birthday, and both my ectopics took place over Christmas and New Year. Others I know remember the dates of their last IVFs, or when they decided not to look at assisted reproduction, or adoptions fell through or they had no choice but to opt out.Though I'd like to give some hope. After over 20 years, I can think of those dates and losses with love and compassion for the woman I was, but largely without the pain. (Although I admit that the Mother's Day reminder is an unkind double whammy.) I've written about this here, and here, amongst other places.

His perspective on how a man grieves, whilst at the same time wanting to help his wife, is complicated too. He had nowhere to find support. I remember my husband saying that his GP asked "if his wife was over it yet." I don't recall him saying the GP asked how HE was handling it. And I remember how, when I was feeling better recovered and stronger, that my husband felt he could finally open up to me more about his feelings. 

Finally, there was a really interesting discussion around envy amongst the childless community. Even though we are all living lives without children now, the speakers felt the envy of those who never got the joy of that positive pregnancy test, or who felt the losses of the children they never had but don't feel they can talk them as losses, or those who never had their losses recognised, or those who never named their losses or had those names recognised by family and friends, or those who never held their lost babies, or those who never saw them take a breath, etc. And those who are envied might also envy - it's only natural, I think. They might envy those who never felt the fear of an emergency hospital intervention, who never felt the grief of a late-term or full-term loss, who never had to take medication or have a D&C to end an incomplete miscarriage, who never had to tell family/friends/colleagues of their loss. 

Envy is, of course, for what the other person had, not what they lost. It's a blindness, and is only about the loss felt by the envious person (eg. the lack of a pregnancy positive, or a good scan, or heartbeat, etc). And that is real. But we also need to know the existence of that envy can feel like we are negating what the subject of that envy has lost. That the magnitude of their loss feels cancelled out by the moments they had that we might not have. 

That's where compassion comes in. And sometimes, compassion can only come with time, when we are less self-centred, and our envy can morph into true compassion and empathy for another's loss. I think, I hope, that the childless community is good at that, ultimately. Most of us recognise that everyone's grief is different, and there's no better or worse.

* I know all this is wordy and perhaps repetitive. If one woman finds this information about ectopic pregnancy, and it helps her or someone she knows, it is worth noting.

 

The different life lived: 20 years on

Infertility and pregnancy loss and childlessness bring a lot of anniversaries. I have the positive test anniversaries, the loss anniversaries - when the losses began, and ended, when I was hospitalised, and had different procedures - the date I knew I'd never have children, and many more. It's a lot. I've heard people say pick a point and grieve. That doesn't work for me. As the year moves on, as the weather and trees change, flowers bloom, there are so many reminders. That's loss. Anyone who has experienced it in any way will recognise the way it can stay with you. Of course, the last year I've had a lot of 20th anniversaries, and there are a few more to come. The ones with the zero seem more obvious, and they hurt a little more.

This last week it was the 20^th anniversary of my second ectopic expected due date, 31 August. I knew by January that the pregnancy was being lost. Later, I also knew that a good friend from the Ectopic Pregnancy online group was due to have her baby, and we shared the same due date. She had her child, and I never resented it, even though I had expected I might. I am grateful for that. The truth was that I mourned the loss of MY baby, and her baby was not mine. In fact, I felt a connection to that baby (and met her a few years later). Some years the date creeps up on me, and I barely notice it. Most years I’m fine with it, acknowledging what never was, and time passing.

This year though, I have known it was coming. I've felt it more. Perhaps it is the significance of the 20^th anniversary. The acknowledgement of that baby's 20th birthday. Perhaps it is the knowledge that I’m the only person in the world who thinks about it. (My husband doesn’t remember the date, and I don’t like to bring him down by reminding him. It's bad enough that tomorrow is Father's Day here, and he's acutely aware of that.) Perhaps it’s the thought of the childhood completely lost as they would have left their teens this year. It's always the loss of the adult life never even started. Perhaps of course it is also the life never lived by his/her parents – the life we never got to live. It's all made it a little harder this year.

We lived a different life. It has been a good life. Filled with adventures and experiences and friendships I would never have had otherwise. With many more years yet, and many more good things to come, I hope! But every so often, I need to acknowledge what has been lost, and the passing of time. And so today, I do that.

Twenty years on: It gets easier

I recently realised that this time twenty (gulp) years ago, I was enduring one of the hardest times of my life. At Christmas the year before, I was newly, happily, but tentatively, pregnant for the second time. But even on Christmas morning, my temperature dipped, and I worried, despite the beginnings of morning sickness starting to appear. Driving home, up the island, there was a tiny bit of spotting. We got home before New Year, and it all began.

I knew I had lost the baby, but my body decided to be “interesting.” My HCG levels kept rising, too slowly, then disturbingly quickly. I was hospitalised twice, once for an operation, but as my levels kept rising, I was brought in again, for close observation and treatment, for days and days of waiting misery, with a baby crying down the hall, just in case I forgot why I was there. I endured a potential cancer diagnosis, fortunately cleared by CT-scans, though not helped with stupid questions (“is there any chance you might be pregnant?” the radiographer asked me) and waited some more, until finally the hormone levels plateaued. The pohutukawa trees were in bloom outside my hospital room window. It was warm, the windows were open, and summer was happening outside, but to other people.

My life and that of my husband was more waiting, along with endless hospital blood tests and scans to see what was going on, being thrown together with pregnant women at hospital, forced to see all the charts of a progressing pregnancy in the waiting room, and being the source of fascination to the doctors and nurses. And we waited.

I got through the time by sharing this with fellow ectopic sufferers on a message board, though they were almost all in the UK or US, and I was in a completely different time zone. But I wasn't sleeping. And they were there, when I was here in the darkest of nights. I remember being overwhelmed with loss when our internet went out for a day or two – these women were my life-line, and losing them even for a few days was hard.

It was discovered in a scan that I had grown a new blood vessel, one as thick as a ballpoint pen, and they made plans to deal with it, and I was admitted. Then as it seemed to grow, they cancelled those plans, and made new plans. I was admitted to hospital again, for an hours-long procedure called an embolization. I was lying for so long on my back that a disc in my spine distorted. It was my first experience of agonising back pain, but not my last. The doctor didn’t care, he just wanted to finish the job. I’m sure he thought I was exaggerating. But I wasn’t.

I then had to wait weeks more to see if had worked, and then given one final operation to remove what was left of the vein. By now it was April, and I had been under hospital care for four months. My friend had given birth, and I’d visited on one of my many hospital visits down in the Unlucky Women’s Clinic, as I called it.

From the outside, it looked as if our lives were the same as they had ever been. I was working (luckily from home, as I was now self-employed), and physically looked normal. But it was all consuming. I was now 40, and the clock counting itself down was deafening. It was another two months before I was given the all clear, and could start my final fruitless family-building efforts. 

Twenty years on, I can write this without tears. I want to reach back and hug that woman who felt so fragile, but tried so hard not to show anyone (except a few very important people) how much it hurt. I want to enfold her in my arms, and let her know that she will be okay. That things will change for the better, and that she will grow in confidence and compassion and wisdom. That writing things down helps, and will become part of her life. That she’ll come to love pohutukawa, despite or perhaps even because of their association with the loss of her ectopic babies. I’ll tell her with a wonderful smile that twenty years on, she will continue to be supported by the most amazing people that she will meet and get to know in the most unconventional ways. That it will get easier, and bring gifts she cannot expect. And that I am not kidding.

 

Losses and last resorts

When I was undergoing investigations and treatment for one of my ectopic pregnancies (I cannot recall which), at the entrance to the hospital car park, one or two anti-abortionists waved signs and shouted at cars and visitors to the hospital. Ectopic pregnancies are not viable, they are dangerous, and can and do lead to maternal death. At the time, I was given a standard ectopic pregnancy medication, methotrexate, to end the pregnancy. Even the Catholic Church acknowledges that ectopics require treatment, and are never viable. But every time I entered the hospital, I wondered what vitriol would be hurled my way if they knew what treatment I was given. But they didn't make me feel guilty. I felt guilty enough that my body had not worked properly, and that I had no choice. That the baby I had been ready to welcome would never in fact make it. No, I felt nothing but anger towards these protestors who were deliberately hurting women (and men) like me who had no choice. And to take it further, they were hurting women (and men) who felt that they had no choice, for whatever reason, and so had to exercise choice.

Enduring pregnancy losses, and infertility, and living a life without children, has only made me feel even stronger about this. Just as I say that many of us walking the No Kidding paths had no choice in the matter, even as others mistakenly tell us we chose to live childfree, it is the same for women seeking abortions. So much about abortion is that the women making the decision have no choice - so many women have missed the opportunity to have any other choices because of financial situations, abusive relationships, failing contraception, illness (physical or mental), poor education, ignorance, foetal abnormalities, etc etc. It's a last resort. A last resort that shouldn't be taken away.

Up until recently, abortion in New Zealand was part of the criminal code. Abortions were available, and funded, but women still had to get the approval of two doctors before it was possible. This wasn't difficult, if you had the means, but I'm sure that for poor, rural women, it was. Not to mention the indignity that women who knew what they needed or wanted, and knew all the alternatives, still had to ask two doctors to acknowledge that they had made the right decision. This situation has now changed, doctor sign off is not required up to 20 weeks, and abortion has been decriminalised. All parties now say they would not change the situation. I cannot imagine how furious I would be if that changed. 

So I feel for my US friends and family and readers. As I've also said on A Separate Life here, I want to let you know that we are all thinking of you. As my Prime Minister said, "it is a loss for women everywhere."

Baby Loss Awareness

Today is Trigeminal Neuralgia Awareness Day. I've written about it on A Separate Life here. In the next week we have Baby Loss Awareness week too, a loss I have experienced directly. Both these experiences have taught me how lucky I am too. In thinking and writing about pregnancy loss, I am grateful for the lessons I have learned, for my growth, and for being able to get where I am now. As you know, I've written a whole series on the gifts that have come from infertility and childlessness.

And in my experience, my No Kidding story began with ectopic pregnancies, just one type of pregnancy loss, just one way of losing our babies. But never having those babies is a loss too, so I have to acknowledge those whose losses are not recognised in the same way.

It's been almost 18 years since my first ectopic pregnancy. I still remember it every day. But 99% of the time I remember without pain. I remember the love I felt for that baby, and the one I lost the following year too. I remember how I felt when I lost these pregnancies, but I don't relive the pain. Time helps. Time heals. Love stays. It gets better. Believe it.

Ectopic Pregnancies, including with IVF

Jess mentioned in a previous post that she couldn't understand why she had had an ectopic with IVF. As many of you know, I worked for six years with the Ectopic Pregnancy Trust (and spent many more years on their site informally), answering questions like hers almost daily. I gave her some information in a long comment on her blog, but thought I would edit it a little and reproduce it here, with some additional information. I know this isn't relevant for those of us who are no longer trying to have children, but others might find their way here, and find it useful. Or it might answer questions for some of you who did have ectopics, or know someone who has had one. So I hope none of my readers mind me talking about pregnancies and loss, here where we usually focus on life after we've said good-bye to all this.

Ectopic Pregnancy

Any sexually active woman of childbearing age is at risk of an ectopic pregnancy. 1-3% of all pregnancies are ectopic (ie, not in the uterus), and 95-97% of ectopic pregnancies are in the fallopian tubes.

However, ectopic pregnancies are more likely if you have had:

• Pelvic Inflammatory Disease - a past infection of the fallopian tubes (for example, chlamydia).
• Endometriosis - a condition which could cause damage to the tubes
• Abdominal surgery - any previous pelvic or abdominal operation, such as caesarean section, appendectomy or previous ectopic pregnancy.
• An operation on the tubes - such as sterilisation
• A contraceptive coil (IUD) fitted - the coil prevents a pregnancy in the uterus but is less effective in preventing a pregnancy in the tube.
• Are on the ‘mini-pill’ (progesterone-only pill) or have recently come off it – progesterone only contraception alters motility of the tube
• Use of the morning after pill with the pregnancy in question
• Fertility treatment (IVF)
• A previous ectopic pregnancy, and
• If you smoke

As you can see, IVF is considered to be a risk factor. In fact, ectopic pregnancy rates through IVF are higher than in the general population. This is often because women who need to seek IVF treatment have an underlying, undiagnosed condition (that has contributed to infertility) that may heighten their risk of ectopic pregnancy. Figures are hard to get however, and of course, clinics are well-motivated to report these differently. A few years ago, we tended to use conservative statistics, stating the risk of ectopic with an IVF pregnancy to be at least 4-6%, or at least twice if not three times the rate in the general populace. But the statistics used in the UK show that the rate of ectopic pregnancy with IVF is around 10%.

When an embryo is transferred into our uterus, it doesn't implant immediately (if, of course, it is going to implant at all), which is why I am always doubly annoyed when the media uses "implants" instead of "transfers." It can float around for a day or two before implantation, and this means it can move from the transfer site. It can therefore travel up into the fallopian tube, and implant there, causing an ectopic pregnancy. Or it can implant at the entrance of the fallopian tube, causing a cornual or interstitial ectopic pregnancy.

Still, 90% of women who have ectopics go on to conceive again successfully (ie, in the right place). 50% of women who have ectopics have none of the risk factors, and will never know what caused their ectopics. So women who are looking for an answer, like me, struggle to find one.

Conditions that can lead to tubal or interstitial (at the connection of the tube to the uterus) ectopic pregnancies with IVF (or otherwise) can include:

• tubes that are blocked or semi-blocked (so if an egg floated up, it might not get back to the uterus),

• balding of the cilia (these little hairs that waft the egg down to uterus can gradually disappear, and so can't do their job), and

• the fallopian tube contractions that help push the egg downwards can, on occasion, reverse. (I was told this by my own specialist, when he was trying to figure out why I had two (one, tubal, one, interstitial, neither IVF) ectopics. I don’t have any data, and he said that they could monitor me for hours, and not see one of these reverse contractions, so I cannot 100% stand behind this last point.

• Jess was told her cilia were pointing or directing the wrong way. I've never heard of this, and wonder how they knew, as the cilia are so tiny infertility tests can't see them. Perhaps they conducted investigations on her removed tube, or it could simply be a case of a doctor surmising, hoping to give an answer to a patient who is hungry for them.

Many of these conditions are almost impossible to diagnose. Hopefully, further research will provide further information.

For more information on ectopic pregnancies, go to The Ectopic Pregnancy Trust website. 

Previous posts where I talk about my own experience of ectopic pregnancies can be found here, and here.