Support after loss

[Jojo23b]

Hi,
I hope this ok to post here. I have recently taken up a new role with work supporting families after pregnancy & baby loss, and I am keen to hear thoughts of families who have experienced losses in whatever circumstances, in particular what care they received from hospital staff during & following their loss and any follow up. I am asking this with an aim to improve services based on people’s experiences, what worked, what didn’t? What do you wish someone had said or done or not said or done? I know everyone wants different things, and what works for some doesn’t for others, but just trying to make the support I can offer better.
Thanks in advance to anyone who wishes to share their thoughts to help me support the families I support/will be supporting.

Hi, I had a MMC mid-April and am happy to answer any questions you have. I found staff to be very supportive and caring the day I found out about the loss, and over the weekend when I was miscarrying. I had booked for surgery but miscarried naturally before it happened. They used the pre-op to rescan me instead and check in etc. They provided a little memory box and a teddy from the Aching Arms charity which was lovely. After confirming that I had passed everything and had no retained products they reassured me and off we went. There was no further follow-up but I feel I could have rung up if needed and would have found support. The emotional side of things was left more to me and my partner although they did pass on a leaflet for the Miscarriage Association.

Not sure what else you might want to know?

I've had four losses. 3 of them were before 7 weeks so I didn't go to epu or anything, I just had very heavy bleeding so didn't feel the need to go to epu. The fourth one had a heartbeat then didn't and I was under a private recurrent miscarriage clinic by then. They recommended me going to epu and ask for the embryo/fetus to be tested. I opted for medical management which was fine to get (had to wait a week to confirm still no heartbeat which was incredibly annoying but understandable) but getting a pot to take home and collect the miscarriage tissue in seemed to be a right palaver like no one had ever asked before. Also, when I bought that back in they didn't know what to do with it and I had little confidence that they'd send it to the right place or even put it in the fridge
. I don't think it's that much of an unusual request, but they made me feel like I was being a big inconvenience.

I was also given the wrong date to come back for medical management so arrived on the Monday mentally prepared, to be told I was booked on Tuesday. They were unapologetic and didn't really see the issue and kept trying to say it was my mistake. The dr just made a mistake writing it down for me, but the way they handled it pissed me off and I was a mess for a bit then.

So for me, just being more organised and human (apologising when appropriate) is what I'd like to see improved. Also more doctors on shifts as I always had to wait at least two hours for the dr to be available while listening to women given birth in the building opposite!.

Hi,

I am happy to be contacted for any further information, our story is below…

On the 9th of April we experienced a miscarriage when we were 16+2 weeks. I had experienced some pink discharge, contacted maternity triage - received anti D (I’m rhesus -ve) and a swab for culture and sensitivity and discharged home. Next day the bleeding was worse, contacted again and advised to come down had a speculum - was referred to colposcopy due to ‘atypical appearance’ and sent for scan, baby was perfectly fine on the scan, we were told we were having a girl and were sent home again.

That night I woke at 2am with abdominal and lower back pain, eventually went to sleep with some paracetamol and hot water bottle. The following day I was in agony same pains but more intense and I had a temperature of 39, covid -ve, called triage crying in agony and informed them of my temp, explained this had reduced to 37.8 with paracetamol. I was informed that I may have a ‘stomach bug’ and if it was an infection my temp wouldn’t reduce with paracetamol (incorrect information) and that I should just use a hot water bottle and have a bath for the pain. I couldn’t even argue I was that unwell.

The following day was the 9th and I just couldn’t handle the pain anymore, my husband called and demanded I was seen. I went the triage unit where they gave me codeine, it didn’t help. I began vomiting, initially the bleeding was improving but I felt something trickling so I went to the toilet. The midwife shone a light between my legs whilst I was sat on the toilet to see what was happening and advised me she needed to do a speculum, I was in agony but they managed and they couldn’t see my cervix. I was wheeled to central delivery suite into the bereavement room, I was asking if I was miscarrying the whole time. I knew I was but I wanted confirmation, I was told they didn’t know. As soon as I got onto the bed my waters broke.

The doctor came, scanned me and explained my uterus was full on clots and the baby was stuck in the vaginal canal and after checking I was fully dilated. I gave birth to a perfect tiny baby girl. I was given an injection to pass the placenta which they told me came out whole. I had to remain in hospital for intravenous antibiotics and was discharged the following day.

10 days later I passed something unusual so I contacted my bereavement midwife who advised me to come in. I had a scan and have 5cm of retained products and required an ERCP. Another night in hospital with IVAB, discharged just in time for the babies funeral. We opted for a private service.

I did not feel supported by maternity triage at all, much better treatment on L&D and from bereavement midwife but a lack of information on discharge on what to expect. I didn’t know I may pass something as they told me placenta was whole so I wasn’t going to phone so I could have developed another infection.. got no results from swabs or anything they said I’d have to wait until my appointment at 14 weeks to see if the could find the cause of the miscarriage. Feel like I’m putting everything into this appointment but also think it’ll be a waste of my time. No information on when we can start trying again or what we can do if we did fall pregnant.

Thank for supporting people through loss, it’s the most horrendous thing and there’s not many experiences for a second trimester loss which is hard.

💗💗