We were delighted and very grateful to welcome Dr Petra Boynton to Parenting Science Gang for an online Q&A on pregnancy loss in Baby Loss Awareness Week 2018. Petra took questions from mothers in advance and on the night. For the first time, here is the transcript of our talk.
Dr Petra Boynton: Thank you to everyone joining us tonight. As you may know it’s Baby Loss Awareness Week (9-15 October) and I wanted a space to talk about our experiences of loss.
I’m guessing most of us will either have had losses ourselves or have been affected by someone close to us who has had a loss(es). Alternatively this might be an area where you work, or want to research. Whoever you are, and whatever your reason for being here, I hope you find this evening’s conversation gentle and supportive. We may want to express a lot of strong emotions, but let’s be kind to one another.
For all of you who have had losses, I’d like to offer you my condolences. I hope tonight is healing and helpful. If you want to share the names of your babies, please do. Equally if you don’t want to share much at all, that is fine.
If you need support before we begin, during, or after our chat, I’ve archived sources of help here: www.copingwithpregnancyloss.com/support This link will take you to charities that offer information and support for anyone affected by any kind of loss.
This chat is focused on women who’ve had a loss, but I shall also talk about partners (boyfriends, husbands, girlfriends, wives) that are also affected but frequently overlooked.
While more research than ever is being carried out and funded currently, there’s still a lot of work needing doing.
My story is this. I’m an Agony Aunt and I’ve worked for decades in International Health Research on sex/relationships issues. With that background you’d think I’d know how to cope with loss. But I didn’t. With my second loss particularly the care I had was really poor. It had a huge impact on the subsequent pregnancies I had that went to term and didn’t, and my mental health. I didn’t want anyone to go through what I did so I wrote a self-help book called Coping With Pregnancy Loss.
So, over to you. Thanks for being here. I’m looking forward to hearing what you’ve got to say. As a quick disclaimer I’m not a clinician so if you have medical questions I would suggest talking to your GP or midwife.
PSG A: I had a miscarriage at 14 weeks ending in a middle of the night d and c because of bleeding.
It was so scary. I was off work for almost two months with recovery and then anxiety/depression. I got pregnant again and had a healthy pregnancy and baby. During my second pregnancy I struggled to explain what had happened and I wanted to avoid similar experiences (especially that rush to surgery when I don’t really understand what is happening). I don’t think my midwife ever understood what I meant. Do you have any thoughts on handling pregnancy after miscarriage?
Petra: Pregnancy after loss is really difficult, but so often isn’t recognised as such. It’s down to patients to alert midwives about past losses rather than this being routinely asked about them. Not everyone knows to do this, nor feels confident enough to ask. In my case I did raise it but nobody followed up or seemed to process it. Like you I was left feeling the midwives and GPs I encountered didn’t seem to follow what I was saying.
I’d be interested in what others in this chat tonight who have been pregnant after loss (PAL) think. What I’ve been told is helpful is firstly knowing that you aren’t alone. That all too often care that should be given isn’t, and that you may struggle throughout your pregnancy with anxieties about the baby or the birth. You might find it harder to bond with your baby or believe you are pregnant, or fear that if you do this it might jinx things. Alternatively you might be hyper alert to every pregnancy symptom (or lack of).
Realistically healthcare workers at this point are not all trained or supported to help those that are pregnant after loss – so it’s down to us to be assertive or enable others who are PAL to do this. That means telling every healthcare worker you encounter that you have had a loss. You can ask them to stick a butterfly sticker on your notes so everyone knows you’ve had a loss before. You can outline in brief your history (a bit like a birth plan) where you note your losses, when they happened, any care you had, any fears you have now and your pregnancy care needs. When you come to give birth having an adapted birth plan that again alerts to your past loss(es) and needs you might have for reassurance is a good idea.
With a newborn it’s not unusual again to struggle to bond or be overly vigilant about the baby. You may have more problems with postnatal anxiety and depression. So asking your GP, health visitor or midwife for help – or encouraging a family member to support you – is vital. There’s a lot of stigma with mental health so while loss does contribute to it, we don’t feel able to admit to it.
Along with the resources linked at the start these are great:
If others here have had a pregnancy after loss and want to share what did and didn’t help you, please join in.
PSG B: I had 3 miscarriages (after years of fertility issues). I then had my daughter (via IVF). I was so scared the whole pregnancy and couldn’t relax. I then had another loss and then successfully had my son. Again I was really on edge the whole pregnancy. I’m really envious of people who ‘loved’ being pregnant as I was just worried the whole time. I definitely didn’t want to start planning or buying anything for ages. I also was overly alert to anything that could have been (or not been) a sign of being pregnant. It was so hard. xx
I don’t think healthcare providers did anything wrong in treating me; it was probably more well-meaning folk who would excitedly talk about how great it was that the IVF worked and when was the baby due and yada, yada, yada. Whilst I wasn’t counting any chickens until they’d hatched and fully fledged!
Petra: I can really relate to that – it’s very difficult to get excited about pregnancy after loss. And I don’t know about you but I felt guilty about that as well. I put off telling people and I didn’t buy baby stuff until the last minute (including maternity clothes, I just went round with my jeans undone for as long as possible!)
PSG B: I don’t think I felt guilty; just a bit sad that I didn’t get to enjoy it as much as I should have done after taking years to conceive. But definitely put off announcing it and didn’t go out and buy stuff until late.
Petra: I recently did an interview for a newspaper about my losses. They asked me if I could share some photos of me during my pregnancies that went to term, or with my newborn boys. I realised when I looked back I had hardly any photos of me pregnant, and the photos of the boys as babies are them, not me holding them. I hadn’t processed this at the time, but now I look back and like you I feel sad that this possibility passed me by (or I avoided it, truthfully).
PSG B: I still did pregnancy photos by week after the 12 week scans (thank god all was okay after we got past that stage). I feel so blessed to have my two healthy children now and also that we didn’t suffer a loss any later than 12 weeks ever.
PSG C: I felt the opposite after my loss.
My first pregnancy I was way too scared to buy anything – even a couple of weeks before my due date. Then had a miscarriage during my second pregnancy.
My third pregnancy I realised that I wanted to enjoy every moment, even if things didn’t go to plan.
Petra: That’s reassuring to hear. Was there anything that made you change your mind about how you approached your third pregnancy? Tips you could share to help others try the same?
I’ve seen some people celebrate ‘rainbow babies’ with parties, photoshoots, or other commemorations and I’m always heartened to see them do that. It isn’t for everyone, but I feel it’s very powerful for those who want to do it.
PSG C: I think my second pregnancy (miscarriage) I was worried the whole time. I had bleeding on and off and I think that sense of ‘knowing’ something wasn’t right that people talk of. After I miscarried I realised I never actually enjoyed much of it, just the first couple of days after finding out before spotting started.
When I got pregnant again I knew there was a chance this was my last pregnancy and I consciously wanted to enjoy it. I won’t say it was all easy – two large bleeds – but I’m very glad I took that approach as a birthed at 30 weeks so if I wanted until the end to enjoy it it wouldn’t have happened.
PSG D: I have only had one very early loss (just over 5 weeks). I didn’t tell anyone at work other than my direct supervisor because I was worried about making my colleagues feel uncomfortable (!). I fell pregnant again immediately afterwards and due to the nature of my work and a tough start to my pregnancy I had to tell work much earlier than I wanted to (9 weeks). I hadn’t even told my parents and then suddenly everyone I worked with knew. I was getting excited congratulations from everyone, which was all well meant but I felt like I was still holding my breath for something to go wrong. It was a really difficult time.
Petra: That issue of fear/uncertainty around pregnancy has been mentioned a few times tonight and I think is so common but we don’t have especially good support for pregnancy after loss. There are some organisations offering it, but not enough. The focus, where it exists, is more on coping with losses but not subsequent pregnancies.
PSG D: I’ve fairly recently had my 2nd child and it’s made me realise how long a shadow was cast by that early loss. I think because of the amount of time that had passed and other things that I had to focus on I was a lot more relaxed this time round. The pregnancy was very different in all sorts of ways but the lack of continuous worry certainly made for an easier experience.
PSG E: Are women routinely offered pics of scans at 12 weeks even if the scan is not as hoped?
We were not offered a photo (I was pregnant with conjoined twins) I’m wondering if that’s the norm or they were just in shock?
Petra: All hospitals vary, and so different sonographers, doctors and nurses have different approaches. For later losses and stillbirths people are usually offered a copy of their scan – but it doesn’t always happen as standard. The National Bereavement Care Pathway is supposed to be changing care in the UK so it will be more sympathetically delivered. It would mean situations like yours wouldn’t happen – or rather you would be offered the choice of whether you would like a copy of your scan. Some people aren’t sure but take the scan anyway because at a later stage they realise it is something they wanted. Others are very certain they do – or don’t – want a reminder.
You may well be right that they were in shock, but still they should have been professional and offered you the choice of having the scan photo. For many parents having a loss around 12 weeks having a scan picture is meaningful as it may be the only memory they have. If you feel up to it, you may want to alert the hospital where you were being cared for – perhaps via PALS (Patient Advice and Liaison Service) so they can let the midwifery team/Early Pregnancy Unit/sonographers know to offer this as an option for parents wherever they are in the pregnancy.
Were you able to find other ways to remember your babies, in spite of not getting a scan? If you didn’t some people find the following are good ways to keep memories going: planting bulbs or trees; crafting or creating artwork; fundraising or awareness raising for a babyloss charity; taking part in research; buying a piece of jewellery; having a tattoo. We can talk more in this chat about ways to create legacies and memories if people wish.
PSG E: Thanks I just saw this ! I did ask for a photo when we saw the specialists and we took our babies home, they had a wool forget me not in their box and we were given one too . It was just the initial scan and it bothered my after, but I did pass it on to the nurse who cared for us at termination .
PSG F: I asked for a copy of my photos, but was told no.
PSG J: We didn’t get offered a scan photo after getting told things were wrong, they acted like it was so abnormal that the whole routine changed.
I cried as I’d left the room without a picture. They said they aren’t saved.
They said they couldn’t fit me in to get a scan photo done. I asked if they could try. I waited for 4 hours crying with family asking how it went, I wanted to show them.
The people working in the department asked if I needed them to call my next of kin, said I was too emotional and it was concerning them for my mental health and moved me to a side room.
I don’t know if I got a photo in the end.
Petra: All our questions tonight are clearly sensitive, but this one details the process of loss, so be aware as you read it.
PSG G: My experience was very traumatic and this was not helped at all by the language used with us once our 12 week scan showed that our baby had died.
Perhaps referring to a lost pregnancy as a baby unless the mother asks you not to would be the way forward. Mine became “a retained product of conception” in 30 seconds flat from being told the baby was dead.
That was heartbreaking all over again as they took my maternity notes away (after all I was no longer pregnant so what use were they) and refused to take or give us a scan picture. Whilst matter of fact may work for some it clearly was not working for me.
We were also rushed into making a decision about how to “terminate” the pregnancy within 20 minutes of being told we had lost our child which was also pretty emotive because what I actually wanted was to hold that baby forever. So, I think something that should happen is more sensitive support for women (and families) experiencing loss, regardless of what stage of pregnancy the loss occurs.
Being able to give those women time and privacy to come to terms with news and to make informed decisions about treatment going forwards and to ensure all medical professionals via your notes are aware that your experience is a loss and not a choice and to treat you respectfully and gently. I would also advocate that counselling be available (even just info about support groups) and that women are given time to return their notes to their community midwife when they feel able (within a time frame by necessity).
Sorry if this is a bit rambling. The treatment you receive after a loss can cloud your entire outlook on future pregnancies and poor treatment compounds that misery and should be changed for the better.
Petra. It’s not rambling, it’s very clear. And it makes me so angry to hear this continues to be an issue. We shouldn’t have to go through this. I suspect there will be others here who’ve had something similar happen. It sounds very like the “care” I had with my second loss.
As you’ll see from my previous answer about scans, yes you should be offered this and absolutely should still be able to request a copy of your notes. This may be useful for subsequent pregnancies (if that happens), along with an important memory of your baby. Also, as I said in the answer about scans, telling your story to the National Bereavement Care Pathway along with the PALS at the hospital where this happened is really important. If you don’t feel able to do this and want me to share in confidence on your behalf please let Rebecca know.
I agree with you about counselling. Not everyone needs it, but if losses were traumatic or if the lack of appropriate care worsened things – then counselling can be very healing. I don’t know if you feel you would like this now, but if you do you can get more information from Petals www.petalscharity.org
Alternatively, while waiting lists for counselling are long, if this is causing you distress then asking your GP if they can refer you is a good idea.
You’re spot on about information on support groups. Just knowing they are out there could be hugely meaningful. I’ve listed a link to as many as I’ve been able to find (I update this regularly) so those may still be useful. I posted it at the start of this chat and I’ll post it again at the end. Have a look at the charities listed and if there is one you particularly relate to you may want to share your story with them so they can relay it to politicians or others they are lobbying. For those that offer training to healthcare workers they can also use cases like yours (anonymised) in training to show staff what NOT to do.[Last year] there was a debate in Parliament for Baby Loss Awareness Week and the issue of counselling was raised and discussed as a priority issue for those that needed it. The problem of disjointed or unsympathetic care was also noted as causing unnecessary grief. There are plans to sort things, but it is likely to be slow and of course requires pressure from all of us to note the bad things we’ve experienced while praising good care (if we got it).
Supporting/lobbying nursing and midwifery councils is also a productive use of time (if we feel up to it) as is signing petitions or writing letters for charities campaigning in this area.
Your last line should be memorised by all healthcare workers. You’re absolutely correct.
PSG B: My first loss was only identified at my 12 week scan. Although I was nervous, I’d naively thought that getting to 12 weeks was a pretty positive sign so it was a massive shock. We were taken to sit in a room for ages and were then told that it might be a molar pregnancy (and were told not to go away and google molar pregnancies which freaked me out in itself!). It was such a horrible experience (though I think it would have been horrendous whatever really).
Petra: I agree, it’s never going to be easy, but it could be made better. If you could go back over what happened, what would you have put in place – and when – that might have made a difficult situation a little easier to bear?
One thing I’m always struck by is how we’re led to believe if you can get to/past 12 weeks you’re fine. Which isn’t true. And, as you say, lots of people discover at a scan what has happened which is a big shock. Also, because of how services are arranged you may be hearing your pregnancy has ended but have to be among those who’ve had very happy news. That can be tough as well.
PSG B: I definitely think there’s a misconception that getting to 12 weeks means it’s going to be ok. Maybe once you’ve had a positive scan at 12 weeks then the odds are that things are more likely to be ok. But so many people have missed miscarriages that are only identified at the 12 week scan and I was so not aware of that in the early days.
I think that there should be much more education about a) fertility issues and b) pregnancy loss so that both of these come as less of a shock when they are encountered. Maybe they did mention this at school but it’s certainly not something that I remember.
Re finding out at the scan, it probably would have been better to have been moved away from the scan area as definitely it was rubbish being in the vicinity of people having good scans.
And the results re whether it was a molar pregnancy took ages. It was only when I admitted back in to hospital about a month later with a horrendous bleed that they actually chased up Charring Cross and got the result. It wasn’t molar thank goodness but I’d had that hanging over me for weeks.
PSG G: I’m so sorry for your loss and the way you were treated during it. I was treated terribly during the scan at which I found out my baby had no heartbeat (MMC) and then hurried out sobbing into a large atrium. I ended up having trauma therapy (EMDR) to deal with the shock and treatment I received. In contrast, the doctor who took extra time with me during the miscarriage was wonderful and helped me to heal. The treatment we receive during loss matters so much xx
Petra: It’s so sad to hear how many of us have had similar experiences – I’m sorry PSG G. You mention EMDR and I know this has been something others who’ve been through birth/loss/trauma have found helpful. If you feel able could you tell us a little more about it, how you accessed it, and what was useful about it.
Something that infuriates me is given how prevalent loss is (to use healthcare speak) and how overstretched health services are, poor care causes so much more pain and distress and extra cost. I know it happens because of cost cutting and a lack of training and prioritising of this area. But because of that it adds to already overstretched services. I’m sure many of us would have struggled but coped if the care was good, but we go under because the care made a bad situation into a trauma. It seems to me so easy to prevent, and yet we haven’t managed it.
PSG G: Thank you Petra. I accessed the EMDR through a local private therapist having seen something on TV about it. It was explained to me that trauma can cause your brain to get ‘stuck’ at the point of trauma, which was the case for me. The therapy meant going back to that memory and working through it which was difficult but helped my brain to process what has happened. Funnily enough, I fell pregnant again 2 days after with my son!
I fully agree that compassion and care at the point of loss is so important. I was struck by how, for the obstetrician, this was her job and she sees this kind of thing every day, but for me, this was losing my baby. It must be hard to bridge that gap with such little time and resources.
PSG H: I experienced poor use of language and insensitivity from HCPs during my loss. “It doesn’t look like it’s ectopic you’re just miscarrying” was one, poor organisation/poor communication between HCPs leading to a more traumatic experience for me. Most of the face to face care I received in the EPU was excellent. But I do find it surprising I wasn’t really given information on where to go for support/counselling/preparing for future pregnancies
Petra: Agree. It’s as if there’s no thought of what you might need when you walk out the doors of the doctors surgery or hospital. It’s not like help isn’t out there. There are at least 60 charities involved in Baby Loss Week alone, and loads more if you factor in associated issues (mental health etc). But the signposting isn’t there. It’s a small thing, so easy to say ‘here’s an app, a book, a website, a phone number’. Or have leaflets or posters around the waiting room.
PSG E: Talking of scans and poor care … I had to walk though the waiting room for scans (where I’d been a week earlier) after my termination and holding my babies in a box. I just can’t believe that there isn’t a way around that! I can’t imagine how I will feel if I go for another scan!
Petra: You’re so right! There has to be a way around this. And it’s why sharing stories is difficult but important because I think a lot of the discussions tend to be about the sadness of loss but not enough about the problems with care – that repeat, and repeat and repeat. One thing you can consider is making plans for having another scan if that’s something you’ll be doing. It could be speaking to some baby loss charities, alerting your GP if they’re sympathetic, speaking to the Early Pregnancy Unit. It needs noting it’s tough. I started saying in my final pregnancy (that went to term) ‘this is hard’ and then explaining why. I had to bring it up, nobody asked. Not all the staff I encountered took notice, but several lovely midwives, thankfully, did.
PSG I: “Well there’s not much you can do”- thanks for that male GP! Oh and the scan technician who just said, “It’s dead” and didn’t speak to me after that. And then during a subsequent pregnancy that went to full term, another technician umming and ahhing over something they wouldn’t give me any information on. Yes, lots of poor care post miscarriage. I think the best was the doctor who asked me how many times I’d been pregnant and then responded with, “That must be a very full house!” No, there’s nobody else but my husband and the dog!
PSG B: Oh good god; you’ve had some horrendous healthcare providers.
PSG I: Yes- really pants ones but there have also been some stellar ones! The nurse consultant who cared for me multiple times on the EPU, came and visited me on the postnatal ward when I had my daughter just in sheer joy that I had made it!
PSG D: I had a midwife from the pau who had supported me during a really difficult phase of my last pregnancy who came to see me on postnatal and was so genuinely happy to see me and my baby. People like that make all the difference. X
Petra: I think we need to keep sharing these stories – the good care, yes. But this stuff that is so awful because these kinds of thoughtless remarks are so easy to avoid. Yet they cause so much harm. For my second loss the doctor explained my missed miscarriage as me ‘never really being pregnant’. As a consequence I didn’t feel eligible for help. And it’s only very recently I’ve described myself as ‘bereaved’ because I was made to feel I hadn’t been pregnant therefore I had nothing to be upset about.
PSG D: I’ve been trying to work out where to post this question and here seems to be as good a place as any:
I’m a medical student. I’m still quite early on in my training but keen to use some of my life experience to improve things where I can. I’d like to think my own experiences would mean I won’t make these kind of awful mistakes, but what would be some simple advice to offer my peers so that they can understand bereaved parents and avoid making these mistakes?
Petra: What about you presenting yourself as a case study and allowing them to ask you questions? IME medical students are anxious of doing this with people in the midst of a loss (understandably), but having someone they could speak to frankly would be very powerful. I have seen some baby loss bloggers and Instagrammers doing talks for midwives, or at conferences, but not sure about training medical students. I’ll do some investigating – could you as well? I’d be keen to see if this might be explored as there are bereaved parents who’d like to help.
PSG I: I like clear language- it doesn’t need to be touchy feely but a simple follow up question of- “how many live births have you had” would have cleared that up very hurtful comment. It’s knowing how to ask clear questions.
PSG E: I found through the process of the additional scan and termination the midwives and nurses did the emotional bits and the drs just kept to facts . I actually found that reassuring.
PSG I: Ah… I had the doctor doing the emotional bits and the nurses/anaesthetists rallying me along. With each loss, the anaesthetist would joke about the dose being a good double of gin and tonic- he really kept my spirits up.
PSG F: I was also told my a male GP “there’s not much you can do” while miscarrying at 11 weeks. I’d gone to out of hours as I was in so much pain, but once he had decided I wasn’t haemorrhaging he sent me on my way with nothing. I was vomiting in pain during that consultation! And later became so delirious another dr had to make a house call at 3am
PSG I: I think sometimes people say things without thinking of the effect. Yes, they’re right- there isn’t much to do but does it need saying?
Sending you love PSG F
PSG F: Also, some pain relief would have been good. They could have done that much for me, and not treated me as a “drug seeker” (they told me no to pain relief as the drug seeking policy didn’t allow it)
PSG I: What? No pain relief? I was given diclofenac (which they shouldn’t have as I’m asthmatic but never mind) and lots of codeine for each loss.
PSG F: Nothing at all till the Dr came out at 3am.
PSG J: I hate the question about previous pregnancies, I wish they’d ask if there were previous miscarriages or something so they don’t assume.
They asked me how many, then said “oh you want a big family then?” And i ended up saying “yes, but they weren’t successful” like I’d failed.
PSG I: There’s enough feelings of failure with miscarriages without it being impacted by thoughtless comments.
Petra: It’s worth noting that while some practitioners are tactless there may be reasons (lack of training, pressure of time etc). And others do deliver great care in difficult circumstances. The psychological impact of care on them is not adequately addressed and again we need to do better not just in training healthcare workers but assisting them when they are dealing with grief and trauma.
PSG E: Definitely! The nurse who cared for us when we had the termination had worked on that ward for 30 years! She was amazing , not the sort of amazing that is taught . But that emotional load must be so heavy . I came home wondering if she got clinical supervision or whether she had another way to be able to hold all that grief .
PSG K: I had a miscarriage at 9 weeks, I waited in the children’s waiting room for 8 hours with my toddler bleeding through many pads, when I finally saw a doctor I showed him the egg sag I’d finally passed asking him if it was my baby, he said ‘maybe, put it in the bin!’ Er no, I think I will take him home and bury him thank you. I understand he was an a&e doctor and maybe not seen many miscarriages, but some sympathy might have helped me. I was pretty distraught by this point
PSG J: During a miscarriage and had gas and air and morphine, I was not really present. I was repeatedly told that my body was trying to miscarry, to remove the remains. They hid what had come out, apparently it was obviously the intact remains of a baby.
When I turned up to a scan on the Monday after, it was booked in as a routine scan. The technician smiled and said all done after measuring everything. I thought she looked to happy to be confirming that nothing was there and I asked “there’s a heartbeat?” Her smile disappearing is etched into my memories forever.
I got a call a few hours afterwards asking why I hadn’t attended a scan and how it was needed within a specific time frame to check baby’s development, they didn’t know I’d miscarried.
It was essentially poor admin but just compounded my grief.
PSG G: This was my question/comment. I went on to have a successful second pregnancy but struggled for the whole 8 months (he came a month early!) with anxiety and depression. I could not believe I would ever have a live baby, I struggled with going for appointments at the same hospital (I had a meltdown at my 12 week scan because we were put in the same scan room as we were when we had previously found out about our loss)
I struggled with the news I would “have to” birth in the labour suite because my baby was breech and I would “not be allowed” a home birth or midwife led birth (in the end the team who delivered my son were amazing and we will always be thankful to them). I struggled with poor care at the hospital throughout my pregnancy (we made an official complaint about one registrar) and ended up being referred for antenatal counselling. I struggled to bond with my son for a good number of months and suffered horrific postnatal depression. The counsellor also suggested I may have PTSD following a traumatic birth experience.
We went to see the birth afterthoughts team when our son was around 4 months old and were told that if we had issues with our care we should talk to our MP because it is all due to poor funding of the NHS. We came away shell shocked because we thought the point of the service was to help you come to terms with your experience and not to tell you to basically “man up” and blame the funding crisis for your experience.
My son turned 3 yesterday and yet I am still in tears typing this so the experience has had long lasting effects for me. About 12 months ago I explored the option of a further pregnancy but with additional risks of miscarriage due to anatomy (bicornuate uterus and newly discovered fibroids) and my age we have decided to stop at one because I am not convinced my mental health would stand up to another loss. Who knows how different things could have been if that very first experience had been handled better?
PSG I: I’m not sure that there’s a clear answer. Currently in hospital having delivered baby number 2 (pregnancy number8) and I have severe mental health needs that are particularly sparked by my losses. My first term pregnancy and baby were very coloured by the losses and the sheer level of anxiety was extortionately high. I am now on a high whack of citalopram to stabilise my moods and have worked really hard on my understanding of failure.
I was however, pretty well supported by my local trust. Not so much with the losses but more with how to cope through the subsequent term pregnancies. I was put under a mental health midwife team and my GP surgery is incredible at checking in on me (I live in SE London and whilst it’s a medical centre, they are superb at individual care).
Huge hugs to you ❤️❤️❤️
Petra: PSG G: I’m so sorry to hear how you were treated and this is still causing you distress (I’m not surprised). If you look through the other threads in this chat there’s a mention of EMDR therapy – I don’t know if this was suggested to you but might be worth exploring. Like you, living with the ‘what ifs’ are really difficult and I wonder with the suggestions of rolling out the National Bereavement Care Pathway if there’s not more scope for those of us who have been adversely affected by poor care to share these experiences?
PSG G: I was not offered anything apart from one hour with the antenatal counsellor when my son was 4 weeks old. I did not ask for support from my GP or HV team as I firmly believed that showing any form of not coping would result in them removing my child (another symptom of the PTSD I would guess) and they did not follow up on anything despite my community midwife highlighting her concerns to them and refusing to discharge me from her care until day 28. I would be happy (although that is not the right word really) to share my full experience with the NBCP if you feel that would be helpful for them- I would need some time to organise my thoughts and get the full story written. I would emphasise though that throughout both pregnancies my community midwife was amazing and was moving heaven and earth to help me get the birth of my choice when I went into premature labour. The delivery team were also amazing, as was the pediatric registrar and the pediatric physio so not every interaction was bad.
PSG L: I’m curious about best practices supporting women after a loss.
As a breastfeeding counselor, I do imagine getting that phone call one day about a baby loss late enough to need to deal with the breasts and thinking about feelings and words that would be helpful as a listening ear.
Also, as someone living overseas from home, I often see posts from well meaning mothers concerned about loved ones going through loss while so far away to offer that invaluable physicality of a hug. I imagine everyone in all stages goes through different processes and there’s no one way to handle everyone, but I also imagine there’s a lot of things that happen often that do more harm than good that more people should be aware of avoiding.
Petra: The breastfeeding issue is very important, but not talked about much. I don’t know if you’ve covered it much within your work, but I am aware there’s a shift now from what was previously encouraged for women who had had a loss and were lactating. Which was to help them stop their milk. Now there’s a bigger move to support women to continue expressing milk (if they want). That might be for comfort, or easing mastitis, but equally it may be because they can donate the milk. I’d be interested to know how supported breastfeeding counselors are to do this work. And, perhaps, whether they aren’t as involved as they might be because mothers are still being discouraged to lactate after a loss?
Regarding good practice, there is the National Bereavement Care Pathway, which is being tried in various locations to improve care. However, at present it’s not standard across the UK and I imagine it needs to extend not just to all places of care but to pick up after care, subsequent pregnancies and interlink with mental health services. We need it and there was a passionate debate on it in parliament and lots of training being offered by charities but with an ever stretched NHS and Brexit on the horizon I wonder whether much of this care will still be done by family and friends. In which case how can we support all who need to be helped to give care formally or informally on a budget?
PSG L: I haven’t had the situation come up yet but have a supportive BFC community to lean on that I am sure has more resources, but this is inspiring to look more into changing practices. I do wonder if stopping lactating is the main suggestion, but sounds like there could be more work needs to be done there for HCP generally, too.
That’s great it was discussed in parliament but the government does seem preoccupied. Is there readily available resources for well meaning bystanders (families, friends, coworkers, and the like)?
Petra: A resource on feeding, or one on babyloss more generally PSG L?
PSG L: Baby loss more generally was my intention. I found a breastfeeding link but always interested in others if they’re at your fingertips
Petra: I’ve been collating all the support sources I can find here: www.copingwithpregnancyloss.com/support/ I’ve also written a book on this which I’ll mention at the end. I wanted to write something that would help in all the situations we’ve been talking about here. Not a replacement for care, but a signpost so people don’t go through all this alone.
PSG E: I had a termination whilst breastfeeding my toddler. My supply was low before termination and then after i suppose my milk came in . I couldn’t find any info for someone in the same position.
Petra: PSG L, is there anything you’re aware of on this for PSG E? The issue of termination and babyloss is fraught in many ways as either there’s TFMR (termination for medical reasons) which people struggle to speak of openly for fear of others reactions. Or termination for other reasons, which is also taboo – and within the babyloss community (for want of a better word) there are tensions for those who, like me, have had losses but remain pro choice. And those who are either anti abortion or who struggle with their own desire to have a baby with other people’s choices to end pregnancies. But because we don’t talk about these areas of loss enough navigating a space to discuss them is difficult. Thanks for sharing here, it’s very much appreciated and we need to do it more.
PSG E: My termination was because my babies were conjoined twins with one heart… I have never heard of anyone experiencing this but try to talk about it openly .
PSG L: No, I don’t but there is little generally about tandem feeding two different aged children in general. I wonder if Hillary Flower, who wrote Adventures in Tandem Nursing and is currently updating the book completely, would have anything or could be interested in having a section on it?
Petra: PSG E: I appreciate your openness. I wonder if you not hearing about this is because people feel they can’t be open. Is there anything you think might help that process?
PSG E: It’s very rare , the specialist consultant I saw who sees the whole of the southwest region had seen 3 in 10 years , so I think that’s partly why . Also I think there is an embarrassment or shame maybe? – as living conjoined twins were in “ freak shows”, and there’s been documentaries made about them.
PSG L: I found this link from a respected IBCLC but there definitely isn’t that much online available www.breastfeeding.support/lactation-after-stillbirth-infant-loss
PSG C: Do you think increased awareness of miscarriage helps with acceptance and healing?
I ask this because I’m a midwife that has worked in an early pregnancy clinic so very exposed to miscarriage and baby loss.
While my miscarriage was sad it was also very easy to accept – I guess I kind of think why wouldn’t it happen to me? Instead of why me. I assume when miscarriage is kept secret and not talked about people don’t realise how common it is therefore are quite shocked when it happens to them?
Petra: I’ve certainly heard that said – historically in the UK levels of loss were higher and it was more likely people would know of families who’d had losses during pregnancy or birth or when a child was very young. In low income countries now where there are higher mortality rates for mothers and babies there’s also an awareness of loss – as in people know it is happening although they may not have the information or access to healthcare to prevent it.
One of the reasons many baby loss charities have focused on breaking silences and encouraging people to speak about losses is to demystify and reduce stigma. Over the past decade (some) people have become more willing to speak of their losses – particularly miscarriage and latterly stillbirth. Ectopic pregnancy is not discussed as much. Termination for Medical Reasons (TMFR) remains very much a taboo, which is very isolating for those who make this choice. Not everyone wants to talk, but having stories out there is useful to indicate that losses happen and people may struggle but they can cope.
I agree with you that it would be more helpful to have some way of viewing this as ‘why wouldn’t it happen to me?’ as loss is so common. I suspect it remains an issue as it’s a scary and sad topic that people don’t want to believe could affect them. Hence much information that’s given to those trying to conceive or who are pregnant assumes everyone will get pregnant easily, stay pregnant and have a positive birthing experience. A more realistic view of all this has been avoided to stop people being scared. Yet if we were better informed that loss is likely to happen and where to get help should that be the case it won’t stop it being distressing but it might make it easier to cope with.
What do others think? How can we make this information more readily available in an easy to follow way?
PSG M: It really helped me when I had an mmc detected at 9 weeks
Petra: Are you able to share what was helpful? MMC is so hard to go through – did you have any idea that was happening or did you find out via healthcare? (btw you don’t have to answer if I’m being nosey).
PSG M: No worries. I was taking part in some research at Tommy’s as a control. The research was to look at whether people who had experienced miscarriages were less anxious in following pregnancies if they had more scans
Petra: Is the trial still ongoing or did you hear what the results were? How did it feel being part of a study? Sometimes people say they do research to get support they weren’t given in healthcare. Others want to remember their baby. Some, sadly, find the research as insensitive as some care can be. I hope your experience was good.
PSG M: So I had a scan at 7 weeks, where the foetal heart pole was detected and received a scan pic. 2 weeks later there was no heartbeat.
I feel lucky that I received an early scan, and that the mmc was picked up before a 12 week scan or that I miscarried without any prior warning. Of course at the time I was rather upset.
It was helpful to know that 1 in 4, probably 1 in 5 pregnancies ended early.
PSG M: I didn’t follow up the results. The staff there were so lovely and helpful.
They also found a large ovarian cyst so I was able to get a referral for surgery and avoid a burst cyst or torsion – so another good thing really!
PSG B: I found that early scans made me less stressed in subsequent pregnancies. But I then got sucked in to a false sense of security with miscarriage number 4 because we had a good, healthy scan at maybe 7 ish weeks, but then the 12 week scan identified the missed miscarriage. I still think extra scans are a positive thing to help previous miscarriage sufferers to cope though.
PSG B: Definitely believe that increased awareness helps with acceptance and healing. The reality might worry people but I’d rather be more prepared upfront than have been so shocked when it happened.
NB: I’m a bit of a pessimist after a lot of crud having gone down in my life, so I’d been very cautious right up to the scan and did still go in to it anxious. But as per my other post, it was that magic 12 week thing that lulled me in to the false sense of security on the first miscarriage. I went in planning to announce to friends I was seeing later with scan photos, and came out shell shocked re the loss/planning the d&c and the possible molar pregnancy.
PSG I: I knew I had a chromosomal issue that caused recurrent pregnancy loss- I’d watched my mum go through RPL in the 80s and thanks to living in London, I had Guys genetic team explaining what was going on. I had a catch up at 16 and then when i had mc number 3. It was a case of knowing that it was coming but I don’t think it necessarily softens the blow. There’s still a hope with every positive pregnancy test even if your chances (like mine) are pretty low of carrying to full term.
PSG P: Do you know of any good practice around supporting women who have miscarried when they then have subsequent pregnancies?
I believe I would have had more support in pregnancy if I had had a later loss or birth trauma when my issues (mainly being terrified that everyday was the day I would lose my baby (x2 as I have had two babies since) and would have to leave the hospital again without my baby plus some trauma around the actual physical handling of the miscarriage) meant that I was experiencing panic attacks when near the EPU and intrusive thoughts about losing the baby.
It’s almost as if, because it was a single first trimester loss (albeit at 11 weeks) they couldn’t understand that I would have support needs and what those would be. There was no pathway of support for me. The first time I saw a supervisor of midwives which was really helpful but that role is not there at that hospital anymore so there wasn’t really anyone for me to talk to who had an overview in my most recent pregnancy. I just ended up retelling my story to lots of midwives and two different consultants (as I needed to explain why I was so upset) which was pretty traumatic in itself.
*NB – I know support for birth trauma and late losses is probably different in different areas. I am only commenting on those as I know that there are protocols for supporting parents who have experienced these at my local hospital.
Petra: I’m glad you mentioned this as there still seems to be an issue in healthcare that an early loss is something that’s easily bounced back from – which for many it isn’t. Later loss and stillbirth care also could be better, but I’d like to hope when that has happened there is greater awareness for subsequent pregnancies. Again, the National Bereavement Care Pathway is aiming to make sure whenever you had your loss the care offered will be good. However, I feel we need to keep reminding them that care doesn’t stop after the loss – it has to be integrated into all future healthcare. So whether that’s subsequent pregnancies or consulting with things like anxiety or depression or other physical health problems.
The whole repetition of your situation is very upsetting, not least when you feel you are not being heard or understood – it’s very frustrating and can make what’s already tense into something far worse.
Good practice, where it exists involves asking about mental health, checking on subsequent pregnancies or losses in the case of multiple miscarriages, referring to support charities or services, and working on birth plans or post natal support that ensures people are supported through birth and beyond given they may still be grieving past losses or struggling with trauma. There are some hospitals that also provide birth trauma debriefing but this tends to still be limited to certain areas and it doesn’t cover those who had early losses.
PSG O: I had a molar pregnancy 4 years ago, there were a few things that came out of my experience I would like to share.
The sonographer and first midwife I saw were clearly at a loss of how to deal with my miscarriage (it was discovered at my 12 week scan). It appeared they didn’t know how to handle it. How much training do they receive?
I was lucky that the midwife who took my blood samples for the next few weeks was known to me from my previous pregnancy and birth, the continuity of carer was very helpful and I felt well cared for, has any research been done into continuity of carer in miscarriage?
Finally, I was very relieved I had told a few trusted friends about, but it was hard explaining to people that I had been pregnant and now I wasn’t, I would have liked more people to know that I had been pregnant with a baby I had been excited about. I was relatively open about the miscarriage and was amazed at the number of women who told me they had also had miscarriages, it made me feel less alone. I would welcome an ending of the taboo of not telling people you are pregnant in the first weeks of pregnancy “in case you have a miscarriage”, it felt isolating to me and meant I wasn’t aware of how common it was. This taboo seems so strong, I felt active social pressure not to tell people in the early days, is there any research into that? Why it is so strong and what good/harm it does?
PSG I: I think you should tell as soon as you feel ready depending on your own comfort and choices. I told people as and when I saw them- no major reveals on social media until I was over twenty weeks- another friend who has had a similar amount of losses to me reveals as soon as the first pee stick. It’s up to what feels right for you.
Petra: Thanks PSG O, those are great points. I’ll share some thoughts but I’m sure others will have insights too.
In terms of training, this remains a big issue. There’s been some research done recently (I’ll try and find a link as I’m not sure if it’s been published yet) that indicates the training rates are low. IIRC it’s something like 3-15 hours of training on bereavement within 2,400 hours of teaching in midwifery. Given how important and common loss is you’d think there’d be more, but there isn’t. As I mentioned earlier, there’s also the problem of evidence not finding it’s way into practice. And a lot of the things that cause distress are poorly delivered caring practices that could easily be avoided (clear and compassionate communication, signposting, continuity of care). TL;DR there isn’t enough training.
Continuity of care makes a huge difference and yes, the lack of joined up care definitely cases more trauma with baby loss. Whether that’s having to tell your story over and over (as we’ve heard already tonight). Or whether it’s going through a loss but still hearing from other departments that aren’t sympathetic (when I had my second loss I got a call from the maternity department wanting to book me in for my appointment, nobody had conveyed to them I’d lost the pregnancy. When I said this they said ‘no point coming in then’). It’s this kind of needless practice that makes everything worse. The National Bereavement Care Pathway has grand goals and I really hope they deliver because it would be focusing on exactly this kind of thing – joined up care and a good standard of care whenever your loss happened.
There is research on people not telling about pregnancies early on. Sometimes it’s because of past losses. More often it’ll be based on faith or superstition that to speak of a pregnancy early might cause a loss to happen. There are also issues of women not being able to speak openly of their pregnancy or hiding it for as long as possible due to modesty. And in cultures where loss is still viewed with stigma it may be dangerous to reveal a pregnancy early on because of what may happen if you lose it. But yes, I agree with you, having the option of telling early if you want to is important. I certainly struggled, and I suspect many do, that having not told people I was pregnant, it was difficult to then say I wasn’t. So I didn’t talk about it.
PSG E: Historically when we lived in closer communities everyone would have known you were pregnant I think ? If you weren’t bleeding and you were tired / sick etc . The older women definitely would have been able to tell ! This not telling thing must be a recent thing and one that goes hand in hand with women’s life experiences being seen as unimportant. A baby isn’t only valuable if it’s a viable pregnancy, but maybe only the mother can understand that .
Sorry I hate the word “ viable !”
Petra: As with so much women’s health I feel there’s a political element to this that babyloss is just not given a priority. We’ve had to fight for birthing and feeding justice, but babyloss justice has lagged behind. Partly, I suspect, due to taboo, partly because it’s not seen as much of a public health issue (although it should be). And because as with everything it adversely affects poor women from low income countries more than anyone else.
This is highlighted when care goes wrong – dismissing, not listening, failing to give information. And even what used to be considered ‘good care’ – which was to tell women as little as possible, and encourage them just to try again, quickly.
Petra: I’ve mentioned the National Bereavement Care Pathway a few times, here’s a link to SANDs website where they explain more about what it is and how it works (it’s not rolled out across the UK yet)
PSG O: Thank you. I’d also know there was some stuff in there about partners – I at least saw a bereavement midwife and other caring people in my experience, but my partner was never asked how he felt or even acknowledged as somebody who has had a loss. It’s more isolating for me as well, it still feels like my loss rather than his (I think my health issues around it being a molar pregnancy also compounded this).
Petra: Thanks for the reminder, I’m going to start another thread about partners because I said I’d mention them and as yet I haven’t. There may be some things that helps your partner, and you, there.
PSG E: I agree there needs to be a lot more support for partners , my husband barely felt acknowledged in the whole process .
PSG B: I think the fact it was a molar pregnancy probably also stumped them. My first one was a suspected molar and I think they genuinely seemed a bit unsure about it all.
PSG O: I agree, everyone seemed very stumped by that, outside of the centre in London (I think at St Thomas’) who investigated mine I don’t think there is much understanding of what it means. The sonographer seemed very confused. The first midwife I saw stuck me in an office with a leaflet – I appreciate that they didn’t want to leave me in the waiting room with all the other women, but it was unfair to leave me and my partner alone and not really understanding what was going on, except that there wasn’t a baby anymore. My later care was better on the whole, especially from the midwife I already knew and the specialist bereavement midwife, but in that first moment I think I was failed
PSG B: God ours was exactly the same. Just left in a room for ages not knowing what was happening!
PSG B: What actually happened after it being diagnosed as molar if you don’t mind me asking? Did you have to have some sort of chemo? The hospital scared me by telling me not to look in to it. Are you ok now or were there any long term effects from it?
PSG O: I had regular blood tests after my d&c and thankfully my hcg levels fell fairly steadily – meaning that all the cells were removed successfully and it stopped replicating. If that hadn’t been the case I would have needed radio therapy. I had to find a lot of that out myself though. It was nerve wracking having the blood tests and then waiting to see if my levels had fallen again or not. I was told not to get pregnant again for at least 6 months because there is a danger of it coming back
Petra: This is something that impacts on finances also. Having to travel for treatment/testing is something that can be difficult if you’re on benefits or precarious contracts. Even if you’re secure at work it can still be tricky if you need time off.
PSG M: My GP told me not to tell anyone until 12 weeks just in case. I told a few people and I’m really glad I had so that I could talk to them after the miscarriage.
PSG I: That’s not fair and not helpful.
PSG F: My first pregnancy I was so excited (it took a long time to get there) and I didn’t keep it at all a secret. When I miscarried, having to tell people was really hard. It’s not that I felt it was shameful, or taboo, but word had got through my friends network, so I found myself having to unexpectedly explain for quite a long time, which was hard.
Petra: PSG O has reminded me I’ve not yet mentioned partners.
A while ago I wrote about partners and said they’d not been studied until recently. Cue lots of very cross historians getting in touch to tell me I was wrong.
They were absolutely correct, of course. The impact of loss on partners has been well documented across history. Here’s a fascinating paper on how pregnancy loss was experienced by men in early modern England:
What I *should* have said is it’s only in the past 40 years or so medical and psychological research has focused on partners. Studies that looked at partners (primarily husbands) found they very often have the same reactions as women who’ve had a loss – so grief, fear, anger, numbness etc. Studies differ about how much that’s experienced – some have found women tend to struggle for longer and with more intense reactions. Others that male partners struggle more because they’re witnessing a loved one going through loss and are helpless.
It’s only very recently lesbian partners have been studied. And there has been resistance for some while from support organisations and healthcare to be inclusive in care for same sex couples having a loss. Again, the partner of the woman who miscarried tends to have similar reactions. Lesbian and bi women in relationships who’ve used assisted conception (as with straight couples) often find things difficult because they have planned a pregnancy in a different way and are aware when they cannot afford fertility treatment.
Partners are often discouraged by other friends/relatives from sharing how they feel because it’s seen as them taking attention away from the woman who miscarried. They also feel they must be the strong one. Or that if they discuss their feelings it’ll cause more distress. They’re more often sidelined by health services. And aren’t sure if there’s anywhere to help them. So they stay silent. Sadly that’s often interpreted as ‘not caring’ which can place huge strain on a relationship.
Trying again after loss can also be difficult for men who’re still distressed, it’s common for them to have sexual difficulties. Again, adding more strain.
Charities are getting better at recognising partners. But this tends to still focus on husbands. So those that aren’t married, or aren’t in heterosexual relationships are marginalised.
There are some excellent men and women blogging about their experiences as partners. And initiatives like ‘SANDS United’ – a football team made up by dads who’ve lost a baby. But we can still do a lot more.
The topic that got me into researching this area personally was partners. I did some public engagement work for the Miscarriage Association called Partners Too and you can see the resources we made here:
If you check the resources I shared for support previously there are some dedicated ones for partners, and most of the charities have partner pages now.
PSG D: We had a very difficult time after my miscarriage because my husband had been really excited about the pregnancy (wanted to discuss names etc etc) but when we lost it his primary feeling was of relief, that he couldn’t be a good parent and that actually things had worked out for the best. At the time he didn’t share this with me because I was devastated and he was really concerned about me. When I fell pregnant again I was really happy and he just wasn’t excited in the same way. I got sent for an early scan due to some bleeding and when they said everything was fine I looked at my husband an he looked like his world had fallen apart.
That for me was the hardest part about the loss – that he’d been so excited and then because of that loss we had become completely disjointed. And remained so for a very long time.
He spent the rest of my pregnancy doing all the right things but his heart just wasn’t in it, and even after the baby arrived that continued for quite some time. I really thought that it had broken our marriage. Fortunately he’s settled into parenting and is a wonderful dad. And the point where he was the one that suggested that we try for another (after having been certain that he didn’t want any more) was incredibly healing. But there were probably 3 years where things were “not quite right” in our family, all because of that very early loss.
PSG F: One of the main reasons that my husband and I are not sure about having more children (we have one daughter who we conceived after two losses and several years) is that he is not sure he can go through another loss. It hit him really hard, perhaps even harder than me in some ways, because he felt he had to “stay strong”, and wasn’t able to grieve the same way I was (which was another issue because I though he didn’t care as much as me, but really he was trying to hide everything)
Thank you for your time and honesty tonight. You have been AMAZING. I’m sorry we’ve had to go over some sad memories. And it’s sad so many of us have had poor experiences of care. If you need support or know someone that does there’s a list of places that can help you here: www.copingwithpregnancyloss.com/support
Baby Loss Awareness Week runs until 15th October, there’s ideas for ways to mark it plus local events that you might want to join www.babyloss-awareness.org
At 7pm on the 15th there’s the #Waveoflight where you can light candles for your babies. Some people like to share this on social media, for others it’s a more private activity.
A lot of what we’ve covered is discussed in my book Coping With Pregnancy Loss. There’s no obligation to buy, but if you want to there’s information on where you can get it online here (including discount options) or you can order it via your local high street book store; or ask your library to stock it.
I’ve got flyers for the book for distribution in healthcare settings or other places you go to – if you want any I can post them – just message me firstname.lastname@example.org I can also sort bulk orders of the book if anyone needs it for their healthcare practice/hospital. And for those of you working in healthcare I do talks on signposting to support if anyone is interested in that.
For those of you that are midwives I’d be interested in your take on the conversations we’ve had here tonight – particularly to clarify if anything is different in your practice or raising issues of where we might be able to support midwives and other healthcare workers.
Some people find sharing their stories of loss healing – particularly to remember their baby. If you want to do that please message me at the email above and I can put you in touch with charities who’ll honour your story.
Thanks for spending this evening with me, I wish you all well.
- Baby Loss Awareness Week
- Comprehensive list of resources relating to baby loss
- Dr Petra Boyton’s book, Coping with Pregnancy Loss