After two late miscarriages, what next?

[islander99]

Still reeling from the dreadfulness of this year. I have a beautiful healthy two year old, but we lost two babies this year. Firstly, no heartbeat was discovered at 16 weeks back in March and was induced for a miscarriage. Post mortem results were inconclusive, we tried again and conceived in the summer.

Earlier this month, after five scans including the anomaly scan, I was worried something wasn't right, a midwife came to reassure me because of my history and again found no heartbeat at 21 weeks.

Both times I had complications with delivery, lost a litre of blood and had emergency surgery for a retained placenta. This time had more scary moments - had a bad reaction to the drugs, which spiked ny temperature, then my blood pressure crashed.

Physically my recovery is going well. Mentally I don't even know how to begin to process what has happened. I am fortunate to be in a loving marriage with lovely family and friends. I am very aware that my priority is to my DS, so I want to heal as fully as possible.

However, I am struggling to access support. I contacted SANDs and received an email from a volunteer, but there is no option of face to face counselling. I've asked for emotional support from Cruse, but you wait six weeks for an assessment, then another 6-8 weeks before sessions begin. I have seen the maternity bereavement counsellor at the hospital, but it was not useful. A nice lady, who cried more than me at my story and barely let me get a word in.

So I wondered if anyone could suggest what my next steps should be. I don't want to be someone who never recovers from tragedy, or it to affect my (living) family's life. However at present I feel totally isolated (Christmas shutdown hasn't helped) and I need some professional help. Given my history, we need to decide whether or not to stop trying and as I'm nearly 36, it isn't a decision we can delay. I want to be in the healthiest place possible to decide.

Apologies for the essay, but would be so grateful if anyone could suggest what else I should try. Thanks

[BipBippadotta]

What a horrible time you have had - I'm so, so sorry to hear about your losses. I can't imagine what it must have been like to be pregnant again after your first loss, with all the anxiety that entails, and to go through the same thing again.

In the past 15 months I've had a stillbirth at 40 weeks with complicated c-section (anaesthetic failed, lost a lot of blood, etc), followed by 2 early miscarriages. I couldn't face SANDS groups, and found their online forum alienating.

Given the massive waiting lists for any sort of therapy or counselling, I found the best way to get consistent support quickly was to find a private therapist. Try the counselling directory (www.counselling-directory.org.uk) and you can search by particular specialisms - i.e. fertility / perinatal loss / trauma. Ideally they should be registered with a regulating body, e.g. UKCP or BPS.

There's also a charity called The Compassionate Friends who offer counselling for people who have lost a child. You might try them as well. Though there may again be waiting lists.

Dealing with this sort of loss over Christmas and when you have a little one to look after must be incredibly hard. Big hugs to you - and your dh - and I hope you find some good support. You sound like you have weathered this year with incredible resilience.

[KleinePoppet]

Dear islander99, I have stumbled across your thread and cannot leave without writing you a message. I am so, so sorry for the loss of your two babies in the last year. I expect you did an amazing job of smiling through Christmas for DS, while it felt as if the world had fallen apart all over again.
And BipBippadotta I am so sorry for your losses, too...
Life is terribly cruel and unfair at times.

Our newborn baby DD died in 2012 (following a birth accident) and I had an early miscarriage a few months later. So I know a little of what you have both been going through. (We have since had a DS, who is nearly two.) I also understand the feelings of complete isolation, but equally of wanting to find ways through the blackness - I am a fairly practical person and I can well remember the need to find solutions that would get DH & I through the next days, weeks and months in one piece.

I thought I could add a few things that I found helpful, in case they strike a chord...

I also hated the idea of Sands groups but made myself go, twice, in order to try to meet people in the same situation. The meetings were - and I won't lie - incredibly depressing. BUT I met three wonderful women, who remain very close friends to this day, and who helped me through, and I suppose in turn I helped them. I genuinely don't have the words to say how helpful this was. Their spouses and children also became friends with DH and I. I made sure to exchange numbers or email addresses at the meetings with the people who I thought I would get on with, and then contacted them again asap. And then we met up whenever we could and spent hours talking/crying/ranting together. One of them later laughingly accused me of only going to the Sands meeting so that I could 'network a room full of miserable people' - she was spot-on, that was exactly what I'd done! I have never been to a meeting of bereaved parents again. If you can't face the meetings, you could email the person that runs them to ask if there's anyone who might want to

We didn't find the counselling at our hospital to be helpful either, in fact some of it was ridiculous. Private counselling with someone who has experience with bereaved parents or of 'babyloss' (hate that word) would probably indeed be the way to go. If you feel that you need it, seek it out, in your area, asap if you are able to afford it. If you can't - well, there aren't many times in life that I would say this, but is there anyone who can help you to pay for it?

I read a lot of books about losing a baby or a child, about trying again after loss, about the reasons why babies die. I needed to know. Some people don't; I did.

I also joined a thread on Mumsnet when we were ttc'ing again, on Conception - it usually has 'angels' in the title somewhere - which I found massively helpful as well. Am still in very regular contact on FB with most of those lovely women. I expect there are similar threads going on now - I know there's one on the AnteNatal board though obviously that's not where you want to be right now - and if not it may very well be worth trying to start one.

It also sounds like you need to access some good medical support from people who will take the time to go through possible reasons for the losses of your babies. Have you had a post-mortem done again? Have the consultants at your hospital been helpful? We sought out the consultants who we felt would help the most and stayed in touch with them. We looked at their credentials online but also based it on people we'd met while in the hospital who were sympathetic (or not...). You are entitled to ask to see people and to be given an appointment as soon as possible; you understandably will have hundreds of questions and it doesn't sound as if you have many answers yet. Is there a very sympathetic midwife or nurse or doctor who can help to point you in the right direction, if you're not sure who can help? Different situation for us, but the head of the NICU was immensely helpful in putting us in immediate contact with people. There will be people who can ensure that you receive the advice and care you need.

I must go but can come back soon and see if anything I have said is helpful, and/or add any more ideas that I've had. Oh, and which area of the country are you in? (No need to say of course if you don't want to.) I'm in SW London and I now, sadly, know people all over the country who have also suffered loss - I or any of them would, I am sure, be happy to help you if we're local to you. Much love to you Xxxx

[KleinePoppet]

Just popped back as I realised I didn't finish typing one of my sentences, re the Sands group - it should have read, 'anyone who might want to meet up or be in contact with you without going to the group'. Xxxx

[BipBippadotta]

Really great suggestions from KleinePoppet - and I'm so sorry to hear about the loss of your baby. It's just unbearable.

May try the SANDS networking myself; it can be incredibly isolating when you don't have people to talk to who understand what you've been through on a visceral level.

Just remembered that a book I found helpful was When a Baby Dies.

Also wanted to say that I felt overwhelmed with a need to 'bounce back' after my dd's death - I felt like if I stopped moving I would drown. I threw myself into work, finished an MA, etc. I was borne along on adrenaline for several months, through my next pregnancy/miscarriage, and I don't think the grief and sadness really hit me in earnest until a couple of months after that, after the initial support from family and friends had tailed off, and as we were approaching the anniversary. I suddenly felt like I'd run out of fuel. That's when it was very important to have the continuing support of a therapist.

I suppose I mention this just to say that it hits everyone at different times and in different ways, and it's really important to go easy on yourself when you feel you need to - whenever that is - and try to acknowledge the enormity of what you've been through. Also, remember that you have gone through trauma as well as grief and heartbreak, and this may have its own way of working itself out.

Re: medical things, our hospital offered us a follow-up meeting 12 weeks after the stillbirth. The meeting was conducted by someone I'd never met before, who'd had no involvement in my antenatal care or the delivery, and she hustled us out after about 15 mins with very little information (except to tell me they'd somehow lost the placenta & umbilical cord they were meant to send for analysis, but that it probably didn't matter). She kept going on about how this was unlikely to happen to us again as we were not in a 'cosanguinous' relationship - she kept harping on bizarrely about people who married their first cousins. It was an absurd and awful experience that I wish I'd been better prepared for.

So to second Kliene's suggestions - I'd get in touch with the hospital as soon as you can bear to and make sure you have contact with people who were involved in your care during pregnancy / delivery, not whichever consultant happens to be free.

I'd also suggest keeping a notebook and writing down anything you want to know at the follow-up meeting as you think of it, and then bringing it to your meeting. Bring someone with you, if you think you may not feel up to asking the questions yourself. Also, you are entitled to a copy of your maternity notes - the hospital can advise you how to get hold of these (you may need to pay for them - my hospital, in an uncharacteristic act of kindness, waived the fee). They do not make easy reading, but that's where I found out most of the information about what had gone wrong (for our daughter it was a ruptured umbilical cord).

Again, I'm so so sorry you are going through this. Wishing you comfort and a much happier 2016. xx

[islander99]

Thank you for taking the time to give such considered responses. It was exactly what I hoped for.

The SANDs group is on Monday. I'm really not sure it's for us, but I like the idea of using it an an opportunity to meet others who have had similar experiences. An acquaintance I met during maternity leave messaged me after seeing my news on facebook as she has just lost a baby at 23 weeks, having had previous losses and we are meeting this week.

I'm also a practical person, KleinePoppet. I've decided to take my time and not rush back to work, so I'm intending a few weeks of quiet structure - decluttering and small DIY projects to rebuild my resilience. I'm also planning a few months of focusing on my health. Not so much a diet as eating plenty of vegetables and getting back into exercise to rebuild my strength. If it doesn't add too much pressure I like the idea of a physical challenge for charity in the summer, but no big decisions yet. I am aware of the dangers of rushing back to normal as you said, BipBippadotta.

We are fortunate to be able to afford the private support we need, so thankfully that is not a concern. DH has suggested should we decide to try again, we could use savings to find better antenatal care privately. One of the issues with my antenatal care this time was the complete lack of continuity of care and not seeing any professional more than once, despite a prescriptive care plan. The only useful suggestion from the hospital bereavement counsellor was her offer to arrange a meeting with a consultant to discuss the care I have received, separately from the results of the post mortem. We have consented to another post mortem, but have the 12 week wait for results. I pinned a lot of hopes on finding a reason for the inexplicable last time. This time I know how often these losses cant be explained. We have had contact with the same bereavement midwives with both losses, so they are my first choice of contact.

Regarding the mumsnet support, I've been a huge fan of the sane advice but mostly lurked for a long time. I joined the thread on the pregnancy board this time around, but found it added to my anxiety. I have the utmost sympathy for anyone who has experienced loss, but I could not feel that the 12 week scan assured me I was safe. Sadly I was right.

We are near Birmingham. If you do know anyone nearby, that would be wonderful.

[KleinePoppet]

Hi again, I just wanted to write a quick message to say that I will come back and reply properly tomorrow - we've been travelling today - but I've been thinking of you, both of you, and will be back soon. Xxxx

[KleinePoppet]

Hello again islander99. How are you today? And Bipbippadotta, too?

I'm pleased you're not rushing back to work... and that you have someone you are planning to meet up with. Taking things as slowly as I needed to, and spending time with others who understood the loss, were enormously important to me. In that way I was different to you, Bipbippadotta - I only re-entered the world very slowly, in small stages, and built myself up very gradually to be able to take on 'normal' life again. Looking back, it would have been good if I had managed to keep more contact with some friends who have been lost along the way and been less of a hermit in the years following DD's death. But, at the time, I couldn't. Just couldn't. And so I don't regret it. I did what I had to, to try to get through the very worst of it, and I did indeed get through that initial blackness to tell the tale.
I hope that, if you go to the Sands meeting, you meet someone who will be helpful to you.

And I do hope that you will have a productive meeting with a consultant as soon as is reasonably possible; and of course that you will be able to find out the post-mortem results after 12 weeks, that there'll be no delay. I can absolutely understand that you feel the need for more continuity in any future antenatal care. My pregnancy with DS was not without risk, after DD's death (like BipBippadotta, this was due to a ruptured umbilical cord; however, I also possibly had a placental abruption at the time that this happened, so there was a risk of the abruption happening again). But even so, the midwife care I had was patchy. Fortunately our consultant was highly sympathetic and very helpful; the consultant sonographer not so much, but he was incredibly experienced, which was more important. My DH is himself a medical doctor, though in an unrelated field, and this gave us a certain confidence to keep pushing until we had found the right people.

I understand what you mean about the thread where people assumed that, once past the twelve-week mark, everything would be ok. The thread I was on, back in 2012/13, was for women who had lost babies or children at much later stages - late miscarriages like yourself, stillbirths, neonatal deaths, or as an infant or a child. None of us were able to believe everyone else's assertions that 'it will all be ok'. One member had two losses, much like you. Many of us had miscarriages and risky pregnancies thereafter. To this day, although subsequent babies have all safely arrived, none of us are able to feel fully confident that 'it will all be ok' - we feel fear about our children to a degree that other people just can't understand. I hope there might be a thread on here like that again, if there isn't already. It was on Conception at that time.

Am happy to recommend some of the books I read as well, if that's helpful? Or have a look for any groups or resources that might be useful, if it's all feeling totally overwhelming? A friend has recommended the counsellors at www.footstepscandc.org.uk/, but they are based in Gloucester - she herself had to travel a distance to get to them - so may be rather impractical for you.
I am so sorry to say, though, that no one I know is that near to Birmingham. I have asked my friends if they know anyone nearby who has also suffered loss, and they will get back to me if so. In the meantime I am happy to help further if I can... Sending love, Xxxx

[islander99]

Thanks so much for your thoughts. Hopefully it will be easier to access help now the Christmas break is over, so I can begin to chase dates for meetings.

Friends are a tricky one. Mine are so kind and supportive but none have any experience of this. Last time around, I really struggled seeing pregnant people, but those I didn't see feel like they have drifted further away and in one case I still haven't met the baby.

This time it feels more like our loss is unrelated to other people's babies. And although it is hard, I want to see them as people so that these children can be a full part of my life. A very good friend (who made me godmother to her first child) is due the day before I was due. Seeing her was difficult, but losing her friendship would have been worse. And at the moment, everything feels difficult.

On the plus side, we have spent today on painting projects, so our living room looks totally different. This feels like a great focus for the mind!