Ealry miscarriage support -what would you want?

[jobobpip08]

Morning ladies, I am very sorry that you find yourselves here. I have also been there twice.

But, this morning I want some help. I am meeting with our gynae ward to try and improve their service to women who have suffered a miscarriage. Currently they offer leaflets, but I wanted to do something more. I realise everyone is different in how they react and what they would want.

I have financial backing from a charity who deals with baby loss and we are looking to provide this to around 300-400 women per year, so we are a little limited in what we can afford to give out. I want to propose that we provide a discreet bag, with miscarriage support leaflets, information on online support and a local baby remembrance garden as a place for reflection and healing. I do have quite a few people keen to knit so I am considering including a small 6inch knitted square with something like a butterfly stitched on. Is this something you might have got some comfort from?

Is there anything else that you would have benefited from, as an item to give you comfort?

Thank you so much ladies, your help is very much appreciated.

Wishing you gentle days
Jo
x

[messtins]

Hi Jo - great idea. I'd appreciate the info on online support, rememberance garden etc. I'm not sure about the knitted square - wouldn't bother me to receive one but also not sure what I'd do with it? Could you include information from the hospital chaplaincy about memorial services for lost babies or their remembrance book?
The other thing is to have a look at the EPU + gynae ward from the point of view of someone experiencing a miscarriage - often there are breastfeeding posters plastered around and leaflets about pregnancy in racks on the wall - just re-siting those makes a difference.
Reminding the staff that it can be a devastating experience wouldn't go amiss either, I know they deal with it every day, but just to have the loss acknowledged helps.

[jobobpip08]

Thanks messtins, I thought of the knitted square like a little baby blanket, as a remembrance item of the pregnancy, an acknowledgement of the baby? Some poeple keep pregnancy tests, I'm sure we all keep scan pictures. In the US there is a charity which knits angels/butterflies on demand for people who have experienced miscarriage as a keepsake.

It is a tricky one, I realise that some people are very pragmatic about their miscarriages but some people can be completely devastated and its trying to find a balance. This is such a good opportunity to go in and have a say!

Our hospital does a service around 15th october so if people looked at our charity website nearer the time I do put the details on. I had thought of a remembrance book, the existing one is for babies and adults.

Yes, training is high on my list of things for improvement! Think we're safe on the pregnancy related leaflets in the area.

Thank you for your thoughts!

[elliejjtiny]

I knitted 2 squares when I miscarried the 2nd time. My baby was wrapped in one and I kept the other one for his memory box. You might want to provide a list of ideas of things to put in a memory box. I remember a friend once saying that they didn't have anything to put in a box but when I said what was in mine she realised that there was a lot of things she could put in.

Is there somewhere quiet to wait to see the dr on the gynae ward? I had to wait in the day room one time while everyone was watching someone give birth in one of the soaps. A separate waiting room would have been nice.

Also, please call our little ones "babies", not foetuses, tissue or retained products of conception. One dr referred to me as my baby's mum which was nice.

I like the idea of the bag with the leaflets and the blanket. If I'd got one of those I would have felt very cared for.

[bonzo77]

I'm sorry, but leaflets and knitted squares were the last thing I wanted. I was lucky to have very good, kind care. The only thing that wasn't available which would have helped was a 24 hr telephone line at local rate, or may be free, to discuss urgent physical or emotional concerns. I ended up having to use nhs direct and the Samaritans, both of whom were much better than nothing, but not ideal.

[jobobpip08]

Thank you both elliejjtiny and bonzo77 - this just goes to show how different we all are. The leaflets currently provided are from the miscarriage association and are, I thought, very helpful. Whilst they are not able to provide 24-7 help, they do have a daytime support helpline. But as I see it, this is where directing people online for peer support might cover the gap.

Elliejtiny - you mentioned you wrapped your baby in a blanket - do you mind if I ask how far along you were when you miscarried? On our gynae ward we are aiming for up to 12/13 weeks as after that you really would fall within the remit of the maternity ward and we already provide them with memory boxes.

Thank you again, I do appreciate you taking the time to share your thoughts.

[jobobpip08]

Sorry forgot to say they are setting up a quiet room on the ward. The EPU which is next door has its own rooms where you can talk to the doctor.

[greengoose]

Hi, it's lovely of you to be trying to do things to help those going through MC.
I've had three Mc, (currently going through the third), and I've also had a little girl who died in GOSH when she was six days old. The standard of care varies so dramatically depending on the hospital, the ward within the hospital, and the person. Work to make staff more aware and kind would mean more than anything else.

I still remember my first ERPC, and an older sister sitting hugging me, and a EPU nurse in London going that extra mile, even checking on me on her way off shift. Those kindnesses mean so much. At the opposite end, that nobody reads notes, so someone like me always has to talk through everything at every appt, even although they have the details in front of them. Even after telling them i lost my daughter it is unusual to have anything human said about this, just medical questions asked. The staff are so defended its rude at times. That some staff don't recognise the SANDS teardrops that are put on the front of notes of berieved parents. Why not?

Re your thoughts about little blankets, I have a blanket from my daughter that some lovely person knitted for babies like her, and we treasure it. But, my other MCs, I choose not to think of them as babies, they were early losses, and I would go mad if I had to think about four dead babies. So I would be in pieces if I was given something like this. I know other people think differently, but I don't think it's appropriate to give these out without knowing the affect they will have.

A summery of practical tips for dealing with MC from other mums, in quote style, (ie, hot water bottles, energy drinks, iron sachets, reading material, chocolate(!), Phone by bed, child care arranged, leggings to feel secure, Bridget jones pants, proper sanitary pads, whether baths are ok, what to do with baby if it is seen, etc) an offer of mattress protectors to take home along with painkillers, and a clear idea of what to expect would be invaluable. Many mums don't know that they will pass clots, or how much pain is acceptable. They can be very scared of what might be seen, of go down the loo. There is usually NO advice given other than, it will be like a heavy period (no, it probably won't), and come back to check everything's gone. The bit in between is not talked about. I have had more compassion from my dentist. Why is this? A charity would be of most help in challenging the culture, a caring hand would be such a lifeline. Maybe a trained volunteer could offer some humanity if the nursing staff can't?

Through the ages it has been women who have supported other women through these times, and that's still what's needed. Any step towards this would be good, so many people feel on there own, just look at the boards here. It's a sad sign of our communities that this support is now 'virtual' when a kind hand and a cup of tea would mean so much.

I hope you can make a difference, and thank you for trying. Xxx

[MrsJohnDeere]

Knitted things would be the last thing I'd want too. I want to move on and have nothing to remind me. I'd feel terribly guilty that people had gone to so much trouble to do something like that and I'd just want to be get rid of everything.

Perhaps I might feel different if it was a late miscarriage/stillbirth or was a first child.

[greengoose]

Oh, another thing is often Mums are very anxious about when they can start ttc again. This is different for the different procedures, and would affect lots of ladies choices if they knew, so it would be good to have a summery of what the different procedures entail including how long you have to wait after before trying again. (ie, I was told straight away if it happened naturally, but two cycles (three months), if I chose/needed ERPC. I had to ask though. I'd have been really upset to find this out afterwards.

[elliejjtiny]

No I don't mind. I was 13 weeks pregnant but at my dating scan the baby had died and was measuring 8 weeks 4 days. The sac was measuring 9 weeks so either his body had shrunk a bit or he hadn't grown towards the end. I didn't wrap him in the blanket myself. I ummed and ahhed about seeing him but decided not to in the end so one of the nurses did it for me.

[jobobpip08]

Thanks for your comments greengoose, I'm truly sorry for the loss of your daugher, I lost my second son at 38+4 so I've been at the other end of the spectrum as well and he was the reason I set up the memory box scheme at our hospital. I view my miscarriages, although devastating at the time, as you do. But i do know some people who very early on, name their baby and it deeply affects them for a long time. (I have so many more knitters than I need for our memory boxes, it just seemed a shame to waste the opportunity. Perhaps I should just separately offer the baby blankets to anyone who has lost a baby, at any gestation and work from there, a sort of catch-all.)

Yes, practical information is a must, that can be sorted easily.

MrsJohnDeere, thank you for your comments, we definitely don't want to make people feel guilty!

I know the big issue in our hospital is going to be training the staff and that unfortunately is something I have no control over. ANd I need to be tactful. Another toughie

[jobobpip08]

Thanks for sharing elliejjtiny

[jobobpip08]

sorry greengoose totally missed your current situation - i am very sorry to hear that. Unmumsnetty hugs to you

[greengoose]

Do you know about the little hugs and woolly hugs projects on MN? I don't know how the hospitals involved use the little hugs, but it might be worth asking the lovely WHs ladies for some advice, as they have been doing this a while....
I'm so sorry you have lost your son at 38 weeks. It's such a terrible thing, and now I know about it, it seems to affect so many families. It's lovely, and very brave of you to do what you are doing. Xxx

[jobobpip08]

Thanks greengoose heard of woolly hugs but not little hugs - off to research! We lost our son in 2008 and whilst the midwives did their best we missed so many memory making opportunities as we were so shocked - this led to us creating our memory box charity (something I felt compelled to do, I was lucky our maternity were so open to the idea and have helped enormously since). Had my eye on the gynae ward for a while as my experience there both times, 6 years apart, wasn't that good. There are far too many of us aren't there, wishing you gentle days xxx

[Hanikam]

So sorry to hear of everything you have gone through greengoose .
My own mc was very early, 7 or 8 weeks, which was emotionally draining. I really hope you had some family support during your loss.

mc is the unspoken secret, there is very little information at the midwife clinic, and I got the feeling I was shunted to one side to avoid jinxing other expectant mothers. Makes you feel like you are the only one who has ever gone through it, even though so many women experience mc as some point.

OP, it's a great idea, but not sure about the wool square....is it to represent the loss?

[jobobpip08]

Hanikam thanks for your comments, yes, the wool square is a keepsake type thing (technical term) but I can see its not for everyone. We've just had an article in the local paper about our memory box charity which has opened up the whole issue of baby loss for discussion. The journalist is keen to support us if we need any further publicity. Thankfully our EPU is far away from the ante-natal clinic, your experience doesn't sound good at all, just at a time when you desperately need some tlc

greengoose have just seen 'you' on the woolly hugs thread- how lovely that Merryn has been the inspiration for the little hugs. And the Woolly Hugs themselves - quite an achievement looking at all they've done. Haven't been on mumsnet for ages and just seen the homepage with their miscarriage code of conduct - theres a really good place for our gynae ward to start.