• Jen Bell

Things we don't talk about: when your baby is in the wrong place

As a society, we don't tend to discuss ectopic pregnancies or other types of losses and miscarriages. But perhaps we should.



When I learned that Breakfast TV host, Hayley Holt had lost her baby boy – two months before the due date, my heart broke for her. I am 35 weeks pregnant with my own little boy due to arrive in early July. The same month as her. I hadn’t realised that we were stepping through the trimesters in such close synchronicity.


A whole storm cloud of emotions tumbled over me. Empathy, of course. That goes without saying. Sadness. A whisper of guilt. Irrational but there all the same.


Then, a sharp jolt as I remembered. I had sailed past my other due date without doing anything to acknowledge it. Because I have two. The one in July and the other one. The one in late April. When I was supposed to give birth to the baby that didn’t make it.


My experience was at the other end of the spectrum to Hayley. I had an ectopic pregnancy, which resulted in surgery and the loss of my right fallopian tube. Along with the perfectly healthy, growing baby that just happened to have set up camp in the wrong spot.


I’ve wondered about sharing my story – it has taken me almost a year to write it. Ectopic pregnancies, like all losses, are not discussed very often. By our friends, family, the media. I guess it’s a difficult subject if you haven’t been through it. It’s awkward. People would rather be talking about where they went for dinner that weekend or what they’re loving on Netflix.


Then, there's the long-held tradition of not revealing a pregnancy until you're past that initial 12 weeks. If you lose your baby during that time, you have two announcements to make. A lot of us tend to keep it to ourselves - for better or worse.


But perhaps we should be talking about it. If we did, more women would realise that they don’t need to feel the shame that so often gets wrapped up in the thoughts and emotions that come with losing a baby. It would still hurt but it would cut the monster down to size. It would no longer be taboo.


So, this is me. Talking about it. If one woman comes across this account and finds it useful or comforting, then it will have been worth it. Here we go.


The early signs


Warning signs for an ectopic differ for everyone, which is why it’s so important to get checked out if you don’t feel quite right. Some women don’t feel anything until they’re practically at death’s door. Others experience mild twinges across their shoulders and back.


The first sign for me was horrific back pain, dragging my eyes open at midnight with no hope of getting back to sleep. I screamed into my pillow not wanting to wake anyone up, before stumbling to the kitchen and making a hot water bottle. I curled up in bed with it searing angry red marks into my back. It hurt but was far preferable to the other pain, and I dozed off after a while.


When I opened my eyes in the morning, the very first thought that popped into my head was:


“As long as there’s no blood. If there’s no blood, it’ll be ok.”


But there it was. What every pregnant woman dreads.


After that, came a series of appointments. First with our local GP who bit her lip when I asked whether we would still be going on holiday in a couple of weeks. Then, a scan at Mercy Radiology where the technicians reported that they couldn’t find anything but that it was “still very early.” Their cheeriness gave me a burst of hope, which I carried around like a beacon until the phone call from my doctor that night.


“I’m sorry – but you have to go to ER. Right now.”


Hospital


The following hours were a living nightmare. I packed an overnight bag in a daze and my husband drove me to hospital. I wandered into ER, feeling like a con artist amongst the visibly sick and wounded but the receptionist took one look at my form and whisked me straight through.


I started crying when they checked me in and didn’t stop for a while. I will always remember the nurse in the first ward snapping at me.


“Stop crying. There are lots of women here worse off than you,” she scolded, jabbing my arm in her three thousandth attempt to get a line in. She gave up and stalked away. I stared after her, openmouthed. Thankfully, I was moved to the gyno ward shortly afterwards and they were lovely. Like chalk and cheese.


While I was trying to get some sleep, a young woman was wheeled in. She had been rushed to emergency surgery after collapsing at home. She was 12 weeks along and didn’t realise that it was an ectopic before her tube ruptured. I sat in my bed behind the curtain and cried for her and her husband. At that point, I still thought that I was taking up a bed needlessly. It was all a mistake. My baby was in there, just not developed enough yet to be visible.


I think the worst part about an ectopic pregnancy is the not knowing. You’re left dangling in no man’s land, swinging between hope and despair. It was days before the ectopic was confirmed. My arms looked like pin cushions from the amount of blood that had to be drawn, tracking the pregnancy hormones as they climbed up and up. Minutes before the doctor came to deliver her final verdict, I was Googling baby names on my phone. I was in complete and utter denial before she walked in but not for much longer. I was crushed. More tears.


Treatment


The journey doesn’t end there, of course. If the baby had stayed where it was, it would have killed me, so you have to make the worst decision imaginable as a mother. I was given the choice of trialing a breast cancer drug, which had seen some promising results. I was sent home and had to report back in a week’s time for more bloods. Sadly, it did nothing for me – other than send me to my knees with the worst, most debilitating nausea I’ve ever experienced. In between retching, my thoughts flew out to all of the women that actually have breast cancer. Having to take these drugs every day. I can’t even fathom it.


Surgery was the only option in the end. So, now I have a scar across my belly button and two neat little lines either side, through which the incredibly talented surgeons at North Shore Hospital in Auckland did their work. I’m surprised that they still look a bit fresh and purple, almost ten months after it all took place. I thought they might have faded by now. I run my fingers over them sometimes, without realising that I'm doing it.


Afterwards


No one prepares you for how you will think or feel afterwards. The nurses and doctors were amazing and very sympathetic but they’re not counsellors. Their job is to fix you up and then move onto the next person that needs their help.


As far as ectopic pregnancies go, there are no support groups that I know of in New Zealand. I wish there was. The rate is about 1-2% of that of live births. So, more than 1000 Kiwi women go through this every year. The rate increases to 4% for assisted reproductive technology, such as IVF.


Lots and lots of women out there, like me, trying to figure out how to get through this awful time in their lives. I suppose I could have looked into grief counselling. But it didn’t even occur to me at the time. I was sore and stunned. I also had ten weeks of painkillers and strict instructions not to lift anything lying ahead of me. Not easy when you’re mum to a 14-month old! I didn’t last anywhere near the ten weeks, even with my husband’s support.


Friends and family seemed to be at one end of the scale or the other post-surgery. Some were absolute legends, while others were - quite frankly - appalling. It served as a bit of an eyeopener on some fronts.


The ones I found the most useful and comforting were the people that did nothing more than listen and tell me how sorry they were. That's all you need. You definitely don't need to be told things like, "at least you know you can get pregnant," or, "you can try again." You also don't need the ones that avoid coming to see you as it's too difficult....for them.


I did try to hide my irritation when people said insensitive things, as their intentions were good (though my poker face is pretty poor so I'm sure I failed!) However, if we talked about these things more and there was a greater degree of education, perhaps we could avoid some of the remarks that people don't realise are the last thing a woman recovering from an ectopic or miscarriage wants to hear!


What I did find helpful was a forum run by The Ectopic Pregnancy Trust in the UK. Simply reading the stories from other women was enough to make me feel less alone – it is far more common than you might think – and gave me confidence that there was some kind of light at the end of the tunnel.


Do what you need to do


If you’re reading this and you are going through an ectopic pregnancy, whether you have just found out, or you’re at the treatment stage, my one piece of advice is to be kind to yourself.


No reaction is the right or wrong reaction. You’re grieving the loss of your baby. Cry. Get angry. Do nothing. If you can’t be around friends or family with kids for a while, that’s ok. If you need to take a hiatus from social media, that’s fine as well.


And don’t worry if you’re feeling ok, and then – in a split second – you’re not again. It’s not a backwards step, you’re simply trying to work through what has happened. The journey isn’t linear. I would feel fine for a while and then something would set me off – an advert, a Facebook post, a story in the newspaper (usually involving babies) – and I would feel like I was right back at the beginning again. I felt like I was walking through fog for weeks.


At some point, the pain will get more bearable. It won’t disappear. I’m not sure it ever will, not entirely. But it will soften around the edges. You will smile again, you will laugh, you will be able to go about your day and not think about it each and every second. As impossible as that seems right now.


I know I’m incredibly lucky. I got pregnant again after my surgery. I was convinced it wouldn’t happen with just the one tube but miraculously the remaining tube went for a stroll across my body and picked up an egg from the tubeless side. I never even knew that we could do that – isn’t nature amazing! So, there is hope, even after an ectopic pregnancy.


When I was finally discharged from hospital care, I had a lipiodol treatment to check that lefty wasn’t blocked (it basically involves your tube being flushed through with dye), which some doctors say can increase your chances of getting pregnant again. I also cut out alcohol and started going to a fertility acupuncturist. I have no idea whether that was effective but it was relaxing and made me feel like I was doing something, which was important to me.


Again – do what you feel is the best thing for you to do. It will be different for everyone. Some women will want to wait before trying again, while others will be determined to have another go as soon as possible. There are no rules. It’s completely down to you and your feelings.


Now


I can’t wait to welcome our baby boy into the family in a few short weeks. My emotions were all over the place in the early days – not helped by terrible morning sickness. For a while, I grappled with the fact that this baby wouldn’t exist if the other baby hadn’t passed away, along with other things, but I learned to stop torturing myself.


I will never forget the other little boy or girl. We are going to plant a tree in their memory when we can. My husband and I will always love them, even though they were part of me for such a very short time. The memory is still painful. I will carry the scars forever. But it is survivable.


Support


Firstly, if you have any concerns at all, do not hesitate to call your doctor or other health provider. You can call Healthline free on 0800 611 116 for health advice and information, contact your out of hours GP service or your normal surgery, or visit your local Accident and Emergency department (A&E).


If you are in severe pain and/or you’re bleeding, get to hospital – ectopic pregnancies can be life threatening. It is difficult to acknowledge that something might be wrong but any delay in seeking treatment can be very dangerous.


I am always happy to lend an ear, if you’re going through something similar and would like to speak to someone that has been there. Please email me at editor@oobymag.co.nz or message me through the chat function on here and I will reply as soon as I can.


The Miscarriage Support NZ page is worth checking out, though there isn’t much dedicated to ectopic pregnancies. They do have advice around how to cope with grief and there’s a closed Facebook group, if you would like to connect with other mums.


The Ectopic Pregnancy Trust is a British charity, but I found a lot of solace in their discussion forums and they do have a helpline that anyone can phone for advice or just to talk. You don’t have to be a Brit.