Miscarriage = Abandoned by your Midwife?

[FannyAnn]

Hello,

Please allow me to introduce myself: I'm a 3rd year Student Midwife with a particular interest in supporting women who have suffered a childbearing loss. In June 2005 I myself suffered a missed miscarriage at 13 week's gestation, complicated by subsequent sepsis following ERPC during which I very nearly lost my life. While the clinical management at the time was exemplary, I have to say I was utterly appalled at the lack of compassion shown to me by the staff who were supposed to be 'caring' for me throughout my ordeal. While some adopted a cold, 'matter of fact' approach, others seemed completely out of their depth and appeared not to know how to act or what to say to me, which in turn, made me feel worse.

However, the biggest blow to me was that on losing my baby my relationship with my midwife ended. She was a lovely individual with whom I connected immediately and we had met on 3 occasions during my early antenatal appointments. I was, therefore, shocked and upset that she didn't phone or visit me after I lost the baby. I was in a terrible state emotionally and had so many questions that I needed answering by someone I trusted - I felt completely abandoned by her, as if the fact I didn't have a baby in my womb anymore meant I was no longer worthy of her time.

As part of my third year studies, I'm looking at formulating an holistic care pathway to guide Healthcare Professionals in caring for women who have experienced early pregnancy loss, concentrating specifically on the role the Midwife plays during this time. Having spoken to numerous Community Midwives, I am sad to say that many do not see it as within their remit to be contacting/visiting women in their caseload who have experienced early miscarriage. I therefore anticipate an uphill struggle to effect any change! However, I am determined in my aim and in order to support my endeavours, would be interested in hearing your experiences/opinions about the way your care was handled during early pregnancy loss, in particular the impact this had on your relationship/opinion of your midwife. I would also like to know exactly what you would like or expect from your Midwife during this time (preconception advice for example)and any other suggestions you think may be of relevance to a Care Pathway of this type.

Many thanks in advance and my heartfelt sympathy to all those mourning the loss of a little one xx

I'm sorry for your awful experience and how strong of you to use it to help others.

I had three early mc's and just felt a bit neglected by all the health professionals really: it's the most important thing that's ever happened to you but to them it's just another crossed out appointment date, they see so many.

I never thought to complain: in hindsight, there is something oddly (very oddly) reassuring in being told oh it happens all the time you'll have a baby in the end. But it was so very dismissive. It would just have taken one phone call or call for midwife appt and chat to help me out with my questions -- that would have helped a lot. Also to have a good cry with. Some women don't have anyone they can collapse with in that way, and we always want to seem to protect the husbands.

I had a very kind community midwife and a lovely midwife who took us through our scans and then explained what had happened.

It was our third, and I knew very early on that something was wrong, as I only felt slightly naseous whereas I had been violently sick for weeks with the other 2. I phoned my midwife one day when I felt my waters go (which is probably impossible at 11 weeks, but that's what it felt like), she booked me in for a scan 4 days later and the midwife there was great. She listened to my concerns, took us down for the scan, and then when I went back to the EPU she was there with the tissues - and I remember her saying "I'm so, so sorry". Just a simple thing really, but it showed she cared iykwim. She took her time to explain what might have happened, what it meant for me physically and what it meant for the future.

My community midwife sent me a lovely card with a beautiful poem, and wrote that she was there for me if I needed to speak to her. The only thing I would have liked was some suggestions as to what to do with the foetus - in our case, the sac with the tiny foetus came out intact, which was quite horrible. Sorry if that's too much information

Anway, sorry for the long and rambling post. Your study sounds brilliant - good luck

jesus christ thank god for you. what an utterly worthy endevour.

I am lucky enough that I booked an independent midwife through my last pregnancy, and I have to say that her guidance through the process of my miscarriage and subsequent heartfelt compassion and empathy and RECOGNITION THAT DESPITE IT BEING SIX WEEKS I'D LOST A BABY helped me more than almost anything else did.

She was there for me.

I think one of the worst things about early miscarriage is the assumption that somehow it is like a late period. The utter lack of recognition that from the moment you have a positive pregnancy test all your hopes and dreams might be directed towards the baby that is beginning to grow inside you. that days mean hours and hours of thinking and fantasising about how it might be to hold that baby and raise that child, let alone weeks worth of that kind of bonding.

My midwife told me that there was no certainty that my (heavy bleeding) was definitely a miscarriage, that it was likely to be but not certain. She advised me to go to the walk in EPU at my local hospital (a service I wouldn't have otherwise known about) in order to get the desperately needed answers I sought.

Midwives could help miscarrying women so much. Women need their input to help them understand what is happening and why. They need their advice on where to go for answers. They need their compassion, they need the woman that has been the primary carer for them through their pregnancy to hold their hand (even if through one or two phonecalls) through the ending.

And EVERY midwife needs somehow to be trained to understand the devastating loss that miscarriage can sometimes be, and often is for women who suffer the experience. For me, that is the most important thing. The recognition that for some women, miscarriage, at whatever stage, is the loss of a baby.

sorry for your loss fannyann and what a scary experience you had after.

After my ist mc at 9wks (natural whilst on hols) I phoned my GP practice to make an appointment. had a telephone consultation and am still really pissed off with how insensitive and lacking in compassion the horrible woman was to me. i was sobbing and distraught and all she could say was "well you know you've lost the baby" "it happens to one in 4" "you've got a DC already so there can't be a problem, just try again after you've waited for a period"

2nd mc was a mmc at 11+wks and a different (male) GP was much more sensitive, referred to EPU as was bleeding and when scanned they were really good to DH and I and I felt safe with them.

Problem was where I am you then go into general surgery for ERPC and the whole experience was awful. . I won't go on but suffice to say asking a woman who has lost a 2nd very much wanted baby who has been sat in a 8 bedded bay day surgery ward (gynae list - I was last - 5hr wait on my own in a hospital gown with no privacy) "are you still upset?" was hell

No follow up from anyone after.

3rd mc - lovely EPU were there for me again when I phoned to say bfp but had started to bleed.

4th pg - I didn;t want to leave the EPU at 12wks but comm mws were really lovely and supportive.

God us mc'ers can go on can't we

Good luck with your study. Just a bit of advice too - I did my midwifery training and picked a subject that I had personal experience and felt passionately about and sometimes it is difficult to keep perspective on critiquing evidence - I got critiscised for opinion rather than facts!

I lost my baby at 18 weeks and had home visits from the community mw team. I really appreciated the time they took to visit me, although I can't remember much of their visits (shock and grief) I did feel supported.

I also had support from the hospital's bereavement mw.

Having said that I had no contact with mw after a mc at 9 weeks. However, my GP did phone me at home to check I was Ok after she got the letter from the hospital about my ERPC.

sorry have just read your post again

formulating care pathway and effecting change - sorry!

I would've just liked there to have been a referral and open access to a specialist pregnancy loss MW or nurse who knows what not to say and can advise / support you at any time after your loss. Sometimes it can be weeks after you need more support

It's not quite the same, but as soon as we had a diagnosis of anencephaly with dd1 at 20 weeks, we were put straight into the care of a wonderful midwife counselling team. My MW took us through everything that happened afterwards, and in the following weeks and months she phoned and listened to me cry, offered advice and was always there for me. When I got pregnant again, she was the second person I phoned - she said "you'll want a scan, will you?" and arranged one straight away - she was there for the scan, patting my leg, and kept in touch during the pg. When I had a bleed at 9 weeks and feared the worst, I rang them, and they arranged a scan within minutes for the following day.

When dd2 was born she came rushing to the ward to visit, and later brought her a present and came to visit us at home. A year later I got pregnant again, but had an inconclusive scan and started to bleed. In a panic I rang the same team - despite the fact it really wasn't their remit, they listened, put us on to the lovely EPU, and were again, incredibly kind. That pg turned out to be molar, but since then we've had our wonderful ds. The continuing support from our MW counsellor, plus the seamless transition between departments, so that we never had to play middle man, made an utterly incalculable difference to our physical and mental health, to our relationship, and we owe so much to them. Everyone should have this kind of treatment - I wish you luck with your study.

So sorry for your horrible experience. I've had three mcs, two of which happened within 24 hours of my booking-in visit, at 12 weeks and 11 weeks respectively. Both of mine ended with hospital syays, one involved a blood transfusion too.

I never heard from the midwife again, though I did speak to a lovely one at the antenatal unit when I rang to cancel my 12-week scan.

Even just a phonecall to say 'sorry for your loss, here are some phone numbers, hopefully we'll see you again very soon' would be a lovely touch.

So sorry for your loss and experience.

I had my first mc at 6 weeks, made an emergancy appointment at the doctors when I started bleeding and was asked 'how would you feel if this is a mc?'. I was quite shocked by that, I felt bloody awful.

At the hospital I was asked whether the pregnancy was planned (as if that makes a difference), what I did for a living, what my DH did, How long we'd tried for etc etc as if any of this was relevant to the mc or an indication of how I should feel. Just because we were young and had only been trying a few months I felt as if I didn't have the right to be upset.

My midwife called me to say she 'guessed that all subsiquent appointments could be cancelled' like I was saving her time.

Wrote a letter of complaint to my GP surgery and the hospital.

It would be great if midwives did see this as within their role.
In my 1st (successful) pregnancy I remember being surprised to hear that the midwife would not even be seeing me until almost 12 weeks. The GP said (in so many words) that this is because early miscarriage is so common it was a way of reducing workload.
I found that out for myself this time when I miscarried at 8 weeks. I had no idea who to turn to or what to expect and it was all made worse because it was New year and a long weekend. If I had a midwife to call, even a duty one, it would have helped so much instead of the clueless OOH GP service. I really just wanted some practical advice and support.
me: How will I know if I need to go to hospital?
GP: If you collapse

Where I live you are unlikely to see a MW before your nuchal scan

Personally I think the MWs have enough work to do without dealing with people having 1st trimester miscarriages

EPU/GP/Gynae provided all the services required for me

I don't think the NHS sees it as within the MW remit either - before 18 weeks you are usually directed to emergency gynae

I would have loved it if anyone had seen it as their remit to care, even a little bit, about me.

First two pregnancies I had seen mws (1st mc was found at the nuchal scan), and they didn't contact me after, and EPAU were totally dismissive (I can go on at length about their lack of care), third and fourth pregnancies I refused to see them. In my fourth (successful) pregnancy, when my GP finally persuaded me that I should see the mws when I was 18 weeks, she was outstandingly dismissive of my fears for the pregnancy, and had me in tears. But then this community midwife ignored me on the ward when I had had DS, and he was in SCBU.

Nottingham EPAU have a wonderful level of care, with followup calls and visits, so there is some really good practice out there

Sorry for your loss - I think this is a very interesting subject to look at.
I had an MMC 10 days ago, so was told there was no heartbeat at my 1 week scan. I as subsquently booked in for a ERPC at the EPU that afternoon (my choice - I didn't want to go home and then have to come back in again for the appointment).
I was completely out of the community mw care, as I was soley seen by the hospital, who said they would fax details of the ERPC to my GP and the MW would know then.
I think at the very least, a call from the MW to offer condolences and give details of where to get further information or counselling in your area would be good. Also to just check on your health and go through again what you might be experiencing/ feeling. All I was given was a leaflet. I'm still feeling very tired, weepy, dizzy etc and suspect I might be a bit anaemic, so would appreciate someone to talk about that with, rather than having to go to my GP.
I feel that I started to form a relationship with my MW, which has been left hanging with no real closure or acknowledgement.

eldon that may be true and if so, it should be within someone's remit.

Eldon, where I live you make an appointment with the MW when you first find out you are pregnant. They book the scan/booking visit then, and have a quick chat about how you are feeling etc.

In my last pregnancy I saw the midwife twice, but began to miscarry the day after my booking visit, at 11/12 weeks.

I don't think it's too unreasonable to think that a quick phone call from MW after a mc would be a good idea.

I had a MC at 11 weeks, I started bleeding on the night of my booking in with Community MW.

My scans and aftercare was dealt with by the EPU who were very kind and gave sheets for medical info and helplines etc. They took my booking in notes after it was confirmed. I can't remember cancelling any future Comm MW appts, but after about 4 weeks I had a phonecall from her. It was a very personal conversation, she said she was very sorry to hear and told me that she had had one too. It was a little bit similar to what other people said but it made my day that she took the time to do that, I don't think she had to but wanted to.

I hadn?t even met my midwife when I miscarried at 11 weeks, despite me registering my pregnancy at 6 weeks? then I had to ring to cancel my booking in appointment scheduled for later that week.
It was a very brief and impersonal conversation as if I was cancelling a hair appointment.

I'm so sorry to hear of your loss.

I agree with scotlass. Sometimes it can be weeks after the loss when you need support. A day after my scan which showed the pregnancy wasn't viable, I had a call from my GP who I assume was trying to be considerate by telling me there had never been a baby, but it was possibly the WORST thing anyone could have said to me at that point because it made me feel like a liar. In hindsight, I assume she was trying to tell me that nothing I could have done would have altered the loss and I shouldn't blame myself, but unfortunately for her I had not actually blamed myself until that point. After that call, I was utterly relieved that my midwife disappeared off the radar, as I couldn't bring myself to try not to cry through any more phone conversations. For the first couple of weeks, I just wanted to be left alone.

If I'd known how much trouble I'd still be having 3 months down the line as a result of the loss, I would have been very grateful of help in the form of a quick phone conversation that didn't involve going for several check up scans alongside happily pregnant women. Even if you just had a number so that you had the option of ringing to ask..."Is this normal?" or "Do I need to seek medical assistance on this?" would be such a comfort and stop women feeling so isolated. The information you are given at the hospital on miscarriage is so limited and largely inaccurate (given most of the posts on this site) that it's a wonder to me that A & E depts aren't bombarded with women who think they may be bleeding to death. If anything, I reckon some women need more support to get through miscarriage than they do with pregnancy.

I guess grief is a very personal thing and we all manage it differently, but there was definitely the sense of total isolation once the baby, and therefore the reason for medical staff being there for me, had gone. I think it's also fair to say that even though a 12 week loss is considered to be an early loss, it should not be underestimated that many women at this point have booked in with the midwife, done the bloodwork and established something of a relationship with them, not to mention a very real place in their lives for the life they believe they are carrying.

Sorry for the rant! You've clearly struck a chord with this idea. I wish you all the best with your endeavour. You're clearly in the right profession!

Hi FannyAnn

So sorry for your loss and difficult ERPC.

I have had two missed miscarriages and my DS was born in between .

With my first pregnancy I booked with the MW at 8 weeks but then booked a private scan at 10 weeks as the pregnancy did not feel right. I felt I had to do it this way as conversations with my MW, NHS direct and my GP made me feel my concerns were unwarranted (no pain, no bleeding). Everyone was very caring at my scan and ERPC but I took a long time to recover from the miscarriage and I felt very alone (thankfully MN was a great source of comfort). When I requested a certificate from the GP to extend my sick leave because I was feeling so awful he just gave me a phone call at home to confirm that it was associated with the miscarriage. Didn't actually check if I was coping...I wasn't. My aftercare didn't need to be from a mw specifically but I did need some aftercare. In reality I suppose I am still traumatised from seeing that scan and feeling that devestation. I am currently ttc and I feel sick at the prospect of the worry of the first 12 weeks of pregnancy.

When I became pregnant with DS I didn't bother to go to the mw until after I had a private scan at 8 weeks. The GP would not refer me. I just didn't see the point. Actually the MW was lovely and said she would have referred me had I come to see her.

With my third pregnancy (MMC2) I went to see the mw at 6 weeks hoping for a referal at 8 weeks as I had the same odd feelings as the first time but the 'usual' mw was off that day. The mw did try to refer me but was unsuccessful. Again, my care at the hospital was good but then I was just sent home to get my life back together.

That was back in October. It wasn't quite as hard the second time but I do feel I could have done with some support. My periods took a while to come back. I am very scared about going through early pregnancy again and don't know how I will get through the scans.

I think it is the post-loss, pre-conception, early conception stage that is entirely lacking in support for women who have experienced early pregnancy loss. I would love to be able to drop by and see my local GP surgery MW every couple of weeks just for 10 minutes to tell her how I am feeling and coping.

The mw I saw for my very first booking appointment was my mw when I was pregnant with my son and in the first few weeks after. I feel sad not to have been able to discuss those losses with her until my next pregnancy.

That ended up being a lot longer than I thought it would be! Thank you for identifying this area of need and pursuing a solution.

Where I live there is absolutely no joined up care.
1 - see gp, inform of pregnancy. gp informs mw.
2 - mw phones to make appointment; see mw (not the same as I had for dd)
3 - 12wk scan. At hospital 1hr+ away, see 3 different people after told no heartbeat
4 - sent to gynae ward, answer same questions all over again (in floods and unable to understand 60% of what dr. says)
5 - gynae ward again for erpc, see another set of (junior) drs at 9am
6 - ward co-ordinator finds out we're there (12.30)
7 - erpc (different people again) 5pm. Get out of hospital after 10pm
8 - phonecall next day from a different mw with no idea what's going on, tell her what has happened, she says 'are you alright now' (!!!) (I said NO!)
9 - phone gp, (speak to a different one, natch) who says 'will hospital send us a letter?'

Basically I feel let down by the whole nhs system. I was given a leaflet about the erpc. But i got all the info i wanted to know (and masses more support) from mn. Some kind of continuous support would be sooo much better, and any kind of follow-up would be good.

Anything you can do, do it!

I have to say people were very kind to me when I had my MMC. The scan technician was really sensitive and kind. He said 'I'm very very sorry. This is so sad. There was a little baby there but its heart isn't beating and it is only measuring 8 weeks.' which was the right thing to say to me. He acknowledged that it was a potential baby and that it was a sad and awful thing and that's really all you can ask. He said that he would go and get someone to take care of us. The midwife who came was absolutely lovely and hugged me and actually remembered me from when I was in labour with DD. My midwife who I'd had the booking in appointment with texted me to say how sorry she was and that I could call her if I wanted. I can't fault the care I received.