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Miscarriage/pregnancy loss

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Obstetrician recommendation - pregnancy after loss

11 replies

Heartbrokenmama · 18/04/2021 19:58

Hey mamas,

Apologies in advance for the very long post - I am going through an unbearable loss so I partly need to vent and share my story, and partly looking for some advice.

Two weeks ago my husband and I tragically lost our precious baby girl very suddenly at 40 weeks, after a seemingly uncomplicated “low risk” pregnancy. For nine months I had been told that everything was tracking perfectly and that I had a “textbook” low risk pregnancy. All our scans and tests had come back normal and the baby was very active throughout, until the very last minute. We were finally at the 40 week milestone and I’d been scheduled in for an induction a few days later in case she didn’t come naturally, as the consultant didn’t want me to go much past my due date. But I went into labour naturally early in the morning the day after my due date and honestly had no idea anything was even wrong until we got to the hospital. We had had a normal check up 3 days prior during which we saw her little heart beating on the screen in front of us, and I had felt the baby move before going to bed. I woke up at 3am with contractions, the hospital told me to hang tight until they became stronger and closer together. A couple of hours later my waters broke and we were in the hospital within 15 minutes, excited to finally meet our little girl...only to be told there was no heartbeat. We are shell shocked. Nothing could have prepared me to hear such devastating news. I can’t understand how we went from having a perfectly healthy baby to a dead baby in the blink of an eye without so much as a warning. I didn’t have any bleeding, no signs of infection, none of the known risk factors... unfathomable.

We had opted to for private care at the Lindo Wing with a private obstetrician because my husband’s cousin had had a stillbirth a few years prior due to NHS negligence and this was always a huge fear of mine, so it was really important to me to feel cared for by an attentive medical team. I can’t believe despite all the precautions that this has now happened to us. Completely shattered.

We absolutely loved our consultant, in part because he was so relaxed and constantly reassured us that everything was progressing as expected, which meant that I was also able to be quite relaxed because I trusted that everything was under control, despite normally being quite a high strung personality. However I am now deeply regretting not being more neurotic about things, not going into hospital for an NST every time I felt the slightest Braxton Hicks contractions.. and I’m also wondering if the consultant was TOO relaxed. Did he miss something? Was he less careful than he should have been because I was supposedly low risk? We are still waiting for a host of post mortem results so I’m trying not to jump to any conclusions or lay any blame before we find out what caused this (and we’ve been repeatedly warned that we may never know because shockingly up to half of stillbirths are never explained...) but I can’t help but feel let down by our consultant whom we trusted blindly to protect us from this very outcome. I sincerely hope the post mortem shows no evidence of negligence as I think it would be extra devastating to learn that this could have been prevented - but regardless of the outcome I do feel that my trust in him is shaken because to go from low risk pregnancy to dead baby just doesn’t add up.

This experience has highlighted to my husband and me how ready we are to have children and start a family. We wanted THIS baby so badly and we were so very ready to bring her home. She was perfect - chubby cheeks, button nose, ten fingers and ten toes - no sign of any issues other than the fact that she wasn’t breathing. A perfectly formed little angel, she looked like she was just sleeping and I kept hoping against hope that they had got things wrong and that she would wake up and cry any minute. They think whatever happened to our baby girl must have happened within 12-24 hours of when I delivered her - and most likely in the last few hours before the contractions woke me up, because she came out looking so perfect, with few signs of deterioration. It was all so surreal, like an out of body experience. We held our precious baby for hours and cried - and my arms now literally ache to hold her again. It’s like having a phantom limb. It breaks my heart to know that sadly nothing will bring her back. We can never replace our precious angel but I am desperate for a baby, for somewhere to channel all this love I was ready to give that now has nowhere to go. We are still a way off from trying for another baby as we need to wait for post mortem results in case there are any implications for future pregnancies, plus for my body to recover from pregnancy and childbirth so that I’m as strong as I can be before another long nine months of growing a little human. But I also know that whenever we are ready to try again, my next pregnancy will be nothing like the first one. For nine months I think I will be living in constant fear and anxiety and if there was an option to move into the hospital and be monitored 24/7 I honestly would do it.

So I was wondering if any other mamas out there who have had experiences of pregnancy after loss could recommend an obstetrician who specialises in rainbow pregnancies? I know it is standard after a stillbirth for subsequent pregnancies to be classed as “high risk” and that additional monitoring is offered even under the NHS. But I think it will be equally important how my own mental state will be managed and supported in addition to the physical monitoring of my pregnancy. I’m very torn about how we handle this and what will make me most comfortable in a future pregnancy. If the post mortem shows no indication of negligence I wonder whether it’s best to use the same obstetrician, with whom we have already built a relationship and there might be advantages to working with someone who has lived through the trauma with us and knows the full history and will hopefully therefore be over cautious next time. But do I trust him enough? For my peace of mind is it best to switch to someone else? Is it even worth paying a small fortune for private care when our experience clearly shows that the worst can happen even with the best care? in all cases I feel I will need someone exceedingly patient to put me at ease and who will understand and support my need for extra monitoring and most likely very frequent visits to the hospitals for NSTs just to reassure me that everything is ok. Any recommendations?

OP posts:
beth821 · 19/04/2021 14:34

I'm so so sorry to hear that you've lost your precious little girl. Did you name her? I'd be happy to chat to you if you'd like if you want to pm me? I lost my little girl after she was brain damaged during labour in November 2018. I went on to have her little brother in Feb 2020 and am in London so can advise on rainbow care (I also saw Prof Heazell in Manchester in his rainbow clinic joint care with my hospital, he is amazing). Have you joined thr Sands forum? There are a host of ladies who can support you on there as well. The main thing to know is that you will get past the intense pain you are feeling now, you will live your life again even if you don't feel it. I honour my daughter in so many ways and she is part of our family. I'm sorry again for your loss.

Sparechange · 19/04/2021 14:40

I’m so sorry for your loss. How absolutely devastating. Have you been given any medical explanation for why it happened?

I had a late loss, although not at full term.

I was under Mina Saviddou for my subsequent pregnancy. She is the head of Fetal Medicine at Chelsea and Westminster in her NHS role so is one of the most skilled and experienced obstetricians in the country for fetal medicine.

She has admitting privileges at the Kensington wing and Portland, but I think does most of her scans at the women’s wellness centre near C&W.

I can wholeheartedly recommend her. She scanned me weekly, monitored me closely but also reassured and supported me throughout

Wishing you all the best Flowers

OpheliasCrayon · 01/05/2021 16:41

Hi I'm so sorry for your loss, I also had a stillbirth and it is absolutely devastating there are no words. I'm so so sorry.

I understand completely how desperate you are to know what happened and understandably you are feeling like there is something that could have maybe been done to prevent it.

I do have a reason for why our little boy died, however we were told before the PM, that although they were very sure what had happened in our case, they still had to tell us that in 70% of all stillbirths, there are in fact no reasons for the cause of death.

I know that this is such, such horrible information to process, but it is very possible and in fact likely that no matter how much the expertise / the fact you went private, there was nothing that could have been done, and no one is at fault. As it goes even though we do have a reason for ours, there was still nothing that anyone could do.

I know this is not likely to bring you any closure but I guess I'm just trying to say that it's not your fault that you've chosen a particular doctor and it's very likely that nothing has been missed and so you have still done the absolute best you could with your pregnancy.

I haven't had a pregnancy after my stillbirth, as one , I have an older child and my stillborn son was a twin so we have his surviving sister, and two I am not able to now have any more children. (I didn't want to).

I do however know many friends having met them through our hospital bereavement group who have gone on to have their rainbow baby. If you possibly can, try to find a hospital that has a specialist bereavement midwife. these will be NHS hospitals and there are very unfortunately only a few trusts that have these. However they are truly amazing people who are an absolute gift to mammas who are having a pregnancy after a stillbirth as they are able to provide that extra specialist support. As you say though all pregnancies after a stillbirth are classed as high risk so you will have extra scans and check ups.

For your mental health, I recommend contacting IAPT If you think you are struggling. They're the NHS mental health service and you can just self refer online. For many stillbirths, people have some degree of PTSD as obviously however it happens it is deeply traumatic. So they may be able to offer you some help. They are still treating me now, many years on.

As for the private / NHS thing, I do have private healthcare but I have had my pregnancies on the NHS. I am very medically complex anyway and I've always has great care with the NHS. We were going to go private for the twins but we then decided not to, as most private hospitals, including the Portland in London, do not have a NICU or ICU so if anything happened (which was obviously likely with twins as they're often born early - and my DD did spend 3 weeks in NICU), you would be transfered to the NHS anyway.

Whatever you decide to do, I wish you all the best and can only truly empathize with your loss, it is a heartache and trauma like no other.

Heartbrokenmama · 01/05/2021 18:08

@beth821 thank you so much for sharing and I’m very sorry for your loss as well. Happy to hear you got your rainbow and that you continue to find ways to remember and honour your angel. How long did it take you to get an appointment with Prof Heazell? I’ve heard there’s at least a 3-4 month wait but I’d love to see him before we start trying again. We named our baby Alya Rose. Alya means sky, heaven, loftiness in Arabic which is my mother tongue - it felt very fitting for an angel baby who skipped this earth and went straight to heaven. And we gave her the middle name Rose after the angelic midwife who looked after me while I was in hospital.

@Sparechange I’m sorry for your loss - a loss is a loss no matter how far into the pregnancy you are. I am glad you had a doctor who was willing to compassionately hold your hand through your subsequent pregnancy and gave you the reassurance you needed to get through it. I will look up Mina Saviddou for sure - thanks for the recommendation. I think the most important thing for me in any future pregnancy is going to be a doctor who will understand and accommodate my need for extra reassurance no matter how excessive or ridiculous, without being dismissive or condescending. Our consultant through this first pregnancy was quite warm, and he was good at answering all my questions but on reflection there were a couple of occasions when he laughed off some of my more paranoid / hypochondriac moments - which was ok when I thought I had a low risk pregnancy and I was quite relaxed about it so I didn’t take anything personally.. but I’m not sure I’d be able to handle that in any future pregnancy as I imagine I’ll be quite stressed. Jury is still out how I feel about our current consultant to be honest.. I went back to his clinic last week for a check up on my stitches and had a meltdown when we walked in, I don’t know whether I’d be able to handle regular visits with a future pregnancy. I guess it also depends a bit on what the post mortem shows.. we’re still waiting for placenta and cord analysis to come back. So far no indication at all that anything was missed but regardless it’s hard to not feel let down and lose trust in the person.

@OpheliasCrayon thank you so much for taking the time to write me such a detailed response and I’m so so sorry to hear about your loss as well. Losing a child is always horrific but I imagine losing one twin must be extra difficult for everyone involved and full of complicated mixed emotions. I hear you that it’s very possible this was not preventable and that nothing was missed. I suppose we just have to wait and see what the post mortem shows and pray that we get some answers. My hospital does have a bereavement midwife who helped us navigate some of the practicalities of this horrific scenarios like arranging all the post mortem paperwork and liaising with funeral homes etc.. however beyond that I haven’t felt very comfortable talking to her about the loss itself. I found her a bit colder and more matter of fact than any of the other “regular” midwives I’ve interacted with who were all much warmer and softer and generally more compassionate with the fragile state I was in. The bereavement midwife had a bit of a “tough love” approach which I just was not ready for.. I suppose the nature of the job maybe has forced her to become a bit more detached? Anyway, I am getting support through other avenues and my husband and I have both just started some grief counselling which will hopefully help as I’m finding it really really difficult to cope with my grief at the moment.

OP posts:
Sparechange · 01/05/2021 18:19

I also didn’t really like the tough love approach of the bereavement midwife I had, which is why I wanted fully consultant-led for my subsequent pregnancy.

I certainly didn’t find Mina dismissive or condescending but there were a couple of occasions when she reminded me things were going well this time and she had my back. She stopped short of telling me to relax, but was gently saying that stressing wasn’t helping me or the baby.

I also noticed that my previous loss was listed prominently enough on my notes to make sure no one ever asked if this was my first etc
There wasn’t a bright sticker or anything obvious but it was noted by anaesthetists and nurses - it made a huge difference to me

I hope the post-mortem brings some answers for you Flowers

Puntastic · 01/05/2021 18:27

Just to say, I'm so sorry for your loss and hope you find the answers you are seeking.

Flowers

Alya Rose is a beautiful name.

OpheliasCrayon · 01/05/2021 18:28

Oh gosh; I'm so surprised to hear that about your bereavement midwife and I'm sorry you have had that experience. The one at our hospital was amazing. She wasn't actually there for our birth and after because it obviously involved a live birth as well - so we were between the midwives and then the nurses and doctors in NICU. But she was a great support afterwards and I would class her as a good friend now as it goes.

Would there be any opportunity to look at other hospitals and find out / meet their bereavement midwives ? I feel you're in London so there are a lot of possible hospitals that you could go to ( I had DD1 in Chelsea West) - I wonder if that is possible if you're not comfortable with the one you have.
I do know that St Thomas in Westminster are very well renowned for complex pregnancies as well as Chelsea West. I actually had genetic testing there before DD1 which is why I know of their reputation.

I'm glad that you have support. It's such an enormously difficult time.

In the kindest possible way your loss is so new, that I am wondering if perhaps now is not the time to be looking for a new hospital. Obviously if this is something you want to do then please, don't feel like I'm telling you you're doing the wrong thing- whatever you feel is right for you you should do. However, speaking as someone a little further along in the stillbirth grief journey , these first few weeks are just such a shock and your hormones and emotions are absolute all over the place. I truly feel that you may need to take a little time to process what's just happened, before you start to plan ahead. I do completely appreciate the need to think ahead though, I was all over the place - obsessively going to the gym one minute, cooking for everyone the next, and hiding in my bed and not moving the next.

Alya Rose is a gorgeous name.

It's also understandable to have had a meltdown when you went back - I did when I had to go for check ups and also for the PM. I still can't go to that floor of the hospital now so maybe a new one would be better just for your mental health, not because the Dr was at fault, as you sound quite unsure about your feelings for this one.

OpheliasCrayon · 01/05/2021 19:01

@Sparechange

I also didn’t really like the tough love approach of the bereavement midwife I had, which is why I wanted fully consultant-led for my subsequent pregnancy.

I certainly didn’t find Mina dismissive or condescending but there were a couple of occasions when she reminded me things were going well this time and she had my back. She stopped short of telling me to relax, but was gently saying that stressing wasn’t helping me or the baby.

I also noticed that my previous loss was listed prominently enough on my notes to make sure no one ever asked if this was my first etc
There wasn’t a bright sticker or anything obvious but it was noted by anaesthetists and nurses - it made a huge difference to me

I hope the post-mortem brings some answers for you Flowers

Our hospital used these - you can buy them yourself to stick onto your pregnancy notes so that everyone who reads them is aware that you're pregnancy is a rainbow , and to read your notes carefully / be sensitive in what they say to you

www.mamaacademy.org.uk/shop/my-baby-sibling-passed-away-stickers/

Heartbrokenmama · 01/05/2021 22:22

@OpheliasCrayon you’re definitely right that I’m not ready. I think my heart, mind and body will need time to recover and heal from the pregnancy and childbirth first of all, and then from the grief trauma on top of that. I don’t think we will try again for months yet, but I’ve found myself obsessively thinking about how to navigate a future pregnancy when the time comes.. probably just my brain’s way of staying busy and focused on something so I don’t go crazy, as time feels like it is standing absolutely still at the moment and every minute feels like an eternity. I might try to speak to other consultants just to get a second opinion and check if there’s anything I should be doing to prepare myself mentally and physically and give any future pregnancies the best chance.. I’m definitely finding that not all my behaviour is rational at this point (scouring mumsnet is not how I’m going to get my healthy rainbow is it!!) but I think in a situation that feels so completely out of my control I’m grasping onto anything I can control, such as researching my options.. now if only being organised and well-researched could bring my precious baby back!!

OP posts:
OpheliasCrayon · 01/05/2021 22:56

Nothing I did was rational. I'd had a very brutal twin emergency c section, and 5 weeks later I was in the gym every day. I don't even go to the gym! But I was absolutely to do anything to take my mind off it. So I just ran until I was in agony. And then I ended up back in the maternity dept being scanned because my scar was murderously painful and I thought something was wrong. They couldn't find anything abnormal and it was only at the end of the appt that they asked me if I had been doing any excercise and then I told them id been obsessively going to the gym and swimming. They told me ever so gently I needed to stop and rest.
But it's so hard isn't it because like you say, you need to feel like you're doing something. But like I said in my last message - whilst I think probably now is a little soon to be doing lots of research, if it comforts you then you should do that.

Is there anything else that you think you could do to keep yourself busy? I know that's a ridiculous question and there probably isn't anything. As you said it was a little different for me as I did have a newborn as well and she also didn't sleep. At all. So the upshot of that was I actually don't think I really started grieving until a year after, when everything just hit me all at once.

Whatever you do, be gentle on yourself. Be kind ans allow yourself to feel whatever you're feeling. There's no right, wrong, normal, abnormal.
No, scouring MN isn't going to change anything but maybe it will help to talk to people who have been through this horrible horrible journey, as it really is so isolating at times. At times I wanted to talk to people about it and then suddenly I just didn't. And I became quite stand offish if people tried to talk to me, which I felt bad for but I think they understood. I hope. I find it easier to talk about it now a few years on, but just... Take each moment as it comes.
I will keep checking back here to see if you've written anything. If you want to say anything at all then I will read it and reply . If you don't then that's also fine, but I just want you to know there's someone here in this little corner of MN if you need.

beth821 · 02/05/2021 13:08

What a beautiful name!

I don't think the wait was that long, I asked my GP to refer me for a pre conception chat with him. It must have been a couple of months because I was just pregnant with my son when I had it but we went through the post mortem and notes and he gave me his opinion on what happened (I could have gone up to Manchester but I asked for it to be by phone). I then went up at 23 weeks for a scan and he then did another one around 32 weeks I think. They are brilliant so I would get the referral in the pipeline if I were you and then you can see how you feel about TTC in the meantime. Everyone is different but we were desperate to get pregnant asap. It took 6 months in the end which looking back is nothing but it felt like forever, I just don't think my body was ready as it took a long time for my period to return. It does get easier and the pain less raw. Look after yourself and be kind to each other. I'm so sorry you have to go through this.

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