RECURRENT SECOND TRIMESTER MISSCARRIAGE/LOSS

[KeepingHope21]

This is my first time posting. Just after some advice, support and hopefully some stories of hope💛.

in 2019 our first pregnancy resulted in our beautiful baby girl being born. Following that we have had three back to back losses. One at 9 weeks in 2020. One at 16 weeks in 2021 and most recently one at 17 weeks in March 2022.

All testing on myself had come back normal.
pathology for our first
late loss shows normal chrosmomes from our baby boy but the placenta displayed aneuploidy.

Our second baby lost to late miscarriage was also a boy, pathology again showed normal chrosmomes but amnitoic band disruption.

so clear causes found each time but with no link at all so finding it extremely diff Ul the to move forward and try again without having anything to help us put a plan in place for our next pregnant .

@KeepingHope21 I'm so sorry for your losses. I really don't know how strong you must be to handle it.
It's all raw for me too (had late miscarriage at 18 weeks and lost my precious baby boy on the 2nd of June). And I'm so angry, disappointed, afraid and sad after one late miscarriage... can't imagine having more...

Please, tell us if you got your results for the third and fourth loss? I'm still waiting for my bloods and placenta results (going crazy...).

I'm also petrified to try again without a plan in place. I can't imagine just getting pregnant and leaving it as it was last time (all seemed fine and loss was out of the sudden!). Ironically on the 17th of June I was supposed to have 20 week scan, but had a funeral for my wee boy...(heard his heartbeat just 2 weeks before on the 16 week midwife appointment!).

Can you also write if you had any signs of these coming? How were you feeling? Anything?

I'm sending lots of ❤

@MomLostInTheClouds thanks for replying to me. I’m so so sorry your going through this. I know your heartbreak all too well. And the first few weeks afterwards are awful. I spent the first 6 weeks in a blur when I look back.

Since writing this post I’ve had some investigations done. Il outline them
here of course incase they become of any help to you. We had a panel of recurrent miscarriage bloods done at our hospital (Northern Ireland). These bloods were basic enough but tested for lupus, clotting issues etc and everything was perfectly normal within these.
With my 8 week loss no testing was done.
With my 15 week loss everything tested including our baby boy was completely perfect except for the placenta which showed a chromosome defect that affected the placenta only and not the actual baby.

With our most recent loss at 16 weeks it showed amniotic band syndrome as the cause. All chromosomes were perfect again. At our follow up meeting with our consultant he said because these two late losses both came back with clear causes that could not be linked in any way it was simply bad luck. Of course we weren’t willing to accept this and pushed for further testing. Yesterday we seen a recurrent miscarriage specialist who has said he feels confident that I could have scar tissue in my womb/uterus due to having a d&c as management for our first loss at 8 weeks. He believes this could be the cause and so I’m having a hysteroscopy in July to check for scarring and potentially correct anything if it does show.
Hes also ordered me to have my vit D level checked.

We went private and paid £240 for a consultation with Dr Gorgy in England. It was a zoom meeting. He is a doctor that focuses on immune issues as a possible cause. He sent us a list of recommendations for testing that we should have so we are paying for those in July. They are bloods tests that are by far more in depth than those offered on the NHS. Very expensive but worth it in my opinion because like yourself I know I could never bare going into this again without finding out what’s happening or excluding things that it could be by exhausting every testing option possible and accessible to us.

we’ve also pushed and in the end finally got a referall to Tommy’s in England through NHS Funding.

The consultant yesterday told us when we do fall pregnant again he will have me on methyl folate, progesterone, aspirin and clexane injections daily as well as a steroid. Reassuring, however I still couldn’t face the idea of being pregnant again without doing my best to find out what is happening with my body.
I find that the nhs are not overly helpful unfortunately and their care is really lacking. Both in physical investigations and also very much with the emotional / mental support side of things.

was this your first child? My heart is sore for you I know only too well the hell your living in the middle of atm.

@KeepingHope21 I'm telling you - you're very brave!
How are you doing now? Is it less painful? Any easier since March?

I'm sometimes quite ok, but when something triggers me I tear up, especially at night. I do hope it gets better.

Yes, I do have kiddos. 2 boys, 4 and 9 years old (both healthy fully term pregnancies by the book). They keep me going and busy. Child no. 3 was so wanted - he was supposed to be our last one since I'm 39 in September 😐and I had this crazy instinct to complete our family before it's too late.

Do you have kids?

I'm so happy you keep on pushing and get tested and tested to get more answers than clues. I've heard about scarring after d&c and I'm glad you'll have it sorted out (if that's the issue).
Vit D...my oh my... I got to know just now it's so crucial. I had it flagged as low (50 the normal is 76-250nmol/L). I learnt about it from the email Zoe from Tommy's sent me stating that there's a link between low levels and miscarriages 😥I was taking supplements with double dose, but after conception and it is advised long before.
Have you checked yours?

Interestingly, I'm also booking private appointment and going to be checked inside out (before my follow up appointment with the consultant...in few weeks!!!). I want to talk about possible plans for future pregnancy (if we even decide we want it). I laughed out loud that after reading Mumsnet and all the literature related to late miscarriages, I'll prescribe you the same treatment (baby aspirin, heparin, folic acid 5mg and methyl folate, vitamins, vitamins. and progesterone pessaries; steroids optional).😄there are plenty of success stories with this sort of treatment as it targets many issues.
What about incompetent cervix? Were you ever checked for that? I was suspecting it in myself, but I actually went into preterm labor and had some contractions so then I thought this is not the right hypothesis.

I can't complain for NHS (I'm in England, Berkshire), but if they don't offer me any plan for the future, I either leave it at 2 kids or go private. I can't imagine another loss...

Keep me updated. I'm so curious about your journey. Waiting for your answer.

@MomLostInTheClouds ahh thanks. I try and commend myself regularly about how strong and brave I am. We all are when we’re faced with this awful journey. And I think our living babies definitely keep us pushing on. I’ve got a three year old girl from my first pregnancy which, like yours, was a textbook pregnancy.

I have had my vitamin D checked yesterday for the first time ever. So I’m interested to hear back the results of that also.

All three of my losses have been missed miscarriages. So I had no signs or symptoms at all. The first two were found at routine ultrasounds and with the third I was using an at home Doppler and struggled to find the heartbeat and went to the hospital and had it confirmed that there was no heartbeat.
I had a d&c with the earlier loss and with both the later losses I had Labour started with mediation and delivered in the hospital.
So my circumstances rules out incompetent cervix as they’ve been missed and not preterm Labour.

Im not sure honestly how to answer in regards to wether or not it feels easier. I’ve definitely moved forward to a point where I’m no longer crying every single day. The first six weeks were honestly horrendous. With my first late loss I completely shut down didn’t eat or sleep and my mum had to move in with us. With my second I swore I would deal with it better but fell into the same dark hole of researching obsessively and letting it become all consuming. We are lucky to have brilliant support around us although I find that nobody really knows the pain and so they don’t know how to address it or speak about it after the first few weeks. Which can really hurt.
My relationship also took a bashing as I felt really resentful that my partner seemed to be somehow coping better than me. (Realistically I know it hurt him just as much but in different ways, plus I was dealing with the physical side of things).
I don’t know if this is common but the losses triggered really bad healthy anxiety in me. I would obsess and worry that something sinister was wrong with me that was causing it. I tried anti anxiety medication and was offered anti depression medication but I didn’t want to rely on these so I tried herbal anxiety remedy called Kalms and found them to be a brilliant help.

All in all, I am doing well now. I still have days (like yesterday after our appointment) where I feel overwhelmed and frustrated and quite honestly devastated but the coping with it is definitely becoming abit easier as time goes on. I’m determined to find answers and won’t stop.

sending massive hugs. Stay strong and fight for answers for your baby and yourself. Try and be easy on yourself and your partner during these times. I’d love to keep in touch and update you as we go along our journey. We may be able to help each other in regards to tests etc let me know if you’d like that and I can forward on my email address or something! X

Great, staying in touch with people who went through the same thing really helps me.

Yeah, Kalms...took it yesterday as I just couldn't stop crying. I felt strong menstrual pains and thought it was my period and PMS, but till now nothing is happening...ahhh.

Oh men...they show it differently. I was also angry with my husband for not even crying when he saw him in the hospital, but at home I saw him crying in the living room. We also cried together. He wants intimacy and me 4 weeks avoiding him...I literally can't. Wad it tough for you too to have sex again?

It took a toll on our marriage. We have silent days and he feels I'm resentful...
God, why does it have to be so hard?

@KeepingHope21 @MomLostInTheClouds hello to both and really sorry to hear your stories of such terrible losses.
I know these posts were last year but I'm wondering have either of you had any more results, revelations or success stories since?
I'm in a pretty similar situation myself - 2 living kids both textbook pregnancies, then 2 late losses at 17 and 20 weeks. Devastating. All results have come back normal and I am now pregnant again, but feel like I'm throwing myself into the lion's den as it could potentially happen again with no cause for the other two found. As precaution, I am on progesterone, extra folic acid and vitamin D, and maybe clexane and aspirin if I get to 12 weeks. Like you, I've found NHS doctors have no clue what to do with me and I have a private appointment with a doctor specialising in recurrent miscarriage this week (I'm also NI based).
Really just feeling totally hopeless and negative about everything at the minute. Hope things are going better for you both x

Hi @MomLostInTheClouds .
So so sorry you have found yourself needing this thread. Since the last time i posted I've had some tests ran under the NHS and also had a virtual appointment with Dr Gorgy, who is a private doctor specialising in reproductive immunology. I hadn't heard of this before my losses but its basically looking at how our immune systems can sometimes attack our pregnancies. He recommended many many tests (almost every test he offers). The price came in at roughly £4500 all in. We decided we would take the lists of tests to our consultant and press for some of them to be run under the NHS but we didn't get very far. The NHS did do a hysteroscopy procedure on me back in November and this was all clear. This was done to test for scar tissue and i really thought it could be the cause of our losses but unfortunately it wasnt.

We then heard through a facebook support group about a professor in England called professor Heazell who specialises in placental issues. He works for the Tommy Miscarriage Research clinc in Manchester. We pushed for a referral and after our consultant eventually agreeing and sending off our funding approval letter to the board at our local trust we were turned down for the funding. They said our loss was not an "exceptional circumstance" and that if they approved the funding it would open the door to hundreds of thousands of applicants. We got in touch with the professors secretary and she was amazing. She went above and beyond to help us and managed to get Professor Heazell to personally write us a letter to our trust to back our funding appeal. Thankfully it was approved that same week. After reading our medical records this Professor said its very clear that my pregnancies are complicated by placental insufficiency. We are still awaiting our initial appointment with him but we are looking forward to it. We have decided we wont try again until the end of this year. Maybe Oct time at the very earliest.
This is for a number of reasons but mainly because after my most recent 2nd tri loss in March i develoepd crippling health anxiety. Initially i was constantly worried about my own health and constantly convinced myself i was ill but it quickly turned its attention to my 3 yr old daughter. My anxiety about her health since losing our boys has been awful. I check her up to 5-10 times at night while she sleeps and for a period of time i even moved her from her own bedroom back into ours. I've had to go bakc to using baby monitors and when she gets a common cold i go into over drive panicking that shes really ill.
Also weve been told by another lady who has been sucessfully treated by Prof Heazell that he normally likes you to take steroids for three months prior to falling pregnant again as a way of combatting your immune system so we are holding off for this also.

I have been told by our NHS consultant that for my next pregnancy i will be given a kitchen sink protocol- basically anything they think might help. So far i know it will look something along the lines of this

Methyl-folate instead of folic acid
Vit D supplement
Daily baby aspirin
Daily clexane injection (Our own consultant said this would be started at a viable heartbeat however the NHs recurrent loss specialist we seen said he would actually want us to start this straight away at a positive test so that may be someting for you to think about and push for).
Prednisone steroid
Progesterone.

Congrats on your new pregnancy, you are braver than you probably believe! How far on are you? Have you had any additional care so far or discussed this? Hopefully you dont mind me asking, but did you ever have any autopsy testing or any genetic test run on your babies that you lost? x

@KeepingHope21 thanks so much for your really informative reply. It helps so much to know other people are going through similar, even though I would never wish these struggles on anyone.
I'm sorry to hear of your extra anxiety surrounding your child, it sounds so hard to live with and totally consuming. I have similar thoughts about my children and husband, always thinking something bad will happen. It's not got as far as me actively doing anything to prevent but I think it's a self protection mechanism; where I'm trying to think of all the worst things that could happen so I'm not shocked if they ever do happen. I know that sounds mad!
Have you spoken to anyone about these new worries? I'm currently on a 6 week counselling course, which is helping massively. Just to have a stranger listen to all my irrational fears, and not even offer any advice, just to listen while I work though them, is a weight of my mind. I was on a waiting list for this through NHS funding and it only came through for me 4 months after my last loss, so a while to wait but worth it so far.
I've had post mortem results back for both losses which showed no issues with me or the babies, or placentas etc. everything showed up normal. So my situation is extra confusing. I'm currently 11 weeks pregnant and the consultant has promised to scan me every few weeks when I'm in second trimester, plus put me on those extra medications for preventative measures really eg clexane, progesterone, aspirin etc. so I suppose I can't really ask for anything more. Although hearing your reply from the specialist, I do wonder should I have been on these from positive pregnancy test? Hoping the private doctor can shed some more light on it, but the consultant has warned me not to get hopes up as she can't see what else he could possible say/do for me, especially now that I'm pregnant again. Maybe if I wasn't pregnant he might offer a scan of uterus but not at this stage. I feel I've jumped the gun a bit, and worry I should have waited to have these tests before I conceived again. I definitely don't feel brave, anything but. Feel like I'm just waiting on the inevitable to happen again x

Morning @KeepingHope21 and @Snoo120190 ,

Really good to hear from you.

I'm glad to hear that you're getting tested, getting a good care and things are moving forward.

As for me, I'm currently pregnant with our rainbow 🌈 baby (17w +1d), but things don't look well.
Despite all extra scans (including cervical scans), dopplers, visits in the DAU, I'm still unsure about the outcome of this pregnancy...so are the doctors and my consultant.

Yesterday had a third bleed with clots (had one at 6w, 14w and yesterday at 17w)...it was with a lot of cramping and the doc prepared me for another loss.

All this on progesterone (200mg x times a day, baby aspirin 150mg, vit. D, OMEGA 3, meds for high BP, prenatals, and controlling my GD).

I'm broken down...
Sort of waiting for it to happen anytime...

My previous loss was at 18w so so close to this.
All results came back normal and my boy's genetic testing also show no abnormalities.

Knowing all this...I'm in a dark place right now...

Hope to hear from you and how you're doing today.

Sending love.

@MomLostInTheClouds so sorry to hear of these issues you're going through in this pregnancy. How is the bleeding since? X

It's so strange that I've read this thread tonight. Ive had 2 losses last year, both at 16 weeks and I'm just banging my head against the wall with my rainbow clinic who haven't even followed me up after my last loss in October. I emailed Tommys yesterday and they've called me back today and recommended I ask for a second opinion from Dr Heazell. We're trying again but im not pregnant yet and all of a sudden im back struggling again with everything. Worrying I won't get pregnant, worrying about how I'll cope if I do get pregnant. It all feels so lonely.
@MomLostInTheClouds @Snoo120190 wishing you the very best for your pregnancies

Hello im feeling less alone too reading this thread. I have 2 kids and I'm 39. I've had 4 miscarriages in the past 3 years and I'm currently 15 weeks pregnant. I've had 2 big bleeds with clots at 8 weeks and 12 weeks and I'm going out of my mind with worry. @MomLostInTheClouds please tell me you are still pregnant? Xx

@Ryanstartedthefire2 congratulations 🎊! It seems we're in the same boat (I'm 39 with 2 kids too, 1 late miscarriage).
Hugging you coz my bleeds continue, but so does the pregnancy.
I'm 22w, it's a girl 😍.
I know how stressful and draining it is...I never what when it's gonna happen again...and it's mentally draining.

So yeah, try to hang on in there.
But make sure you go and check it regularly.

Are you on progesterone?
Any vitamins?
Omega 3 and magnesium relax the uterus and the bleeds so consider trying (Proceive Omega 3 for preg).

Cervical scans?

If not, definitely go to the day assessment unit.
It can be shortening cervix, low lying placenta (which I had, 1.2cm from os and they suspected bleeds from there), subchorionic hematoma, etc.

Keep us posted.

It's good to know we have each other and surely can support each other here.

Best of luck!
@MrsC2018 keeping fingers crossed for you!
Any good news?
I'm so so sorry for your losses.

You're very brave to be able to do it again...
Have they found the reason behind it?
Can it be incompetent cervix?
You should have a plan in action, with cervical scans, aspirin, maybe progesterone or a stitch.

It's worth to chase your midwife and ask them. I'm also under the Rainbow Clinic, but they are providing a great care for me and even diagnosed my GD just at 16w.

Keep us posted too.

@MomLostInTheClouds congratulations on getting to 22 weeks, really hope it all settles and you can enjoy even a tiny part of pregnancy.
Yes I'm pregnant, 7 weeks but have been told this week it's a c section ectopic and advised to terminate. I've asked for an MDT to see if I'm a candidate for expectant management where they'll observe and see what happens, but essentially baby has implanted to my section scar rather than my uterus so I'm at significant risk of haemorrhage and uterine rupture. It feels unreal after 2 seeming rare independent events meaning I lost 2 in second trimester to be hit now with a this but just praying this one clings on and I can try and get at least close to baby being able to survive with an early C-section. I'll be very lucky to get to 28 weeks though even if they do agree to let me try.

@Ryanstartedthefire2 I'm 39 next month and have 2 kids too. So sorry to hear about your miscarriages, hope the bleeding has settled for you and all is well

Hi @KeepingHope21I know this is a very old thread, but I’m so desperate. I lost my son at 19 weeks last year after 3 weeks of random contracting and cramping and tender uterus. The hospital dismissed it as a UTI but no infection was ever found. All the tests the NHS ran came back normal, no infection in placenta, just inflammation, no chromosomal issues, no structural issues, etc.

I'm currently 17 weeks pregnant after being promised the kitchen sink treatment, but all my consultant would sign off was progesterone. They won’t do anything else. I’m having cervical measurements but even then she said she won’t do a stitch. We approached Dr Shennan at London St Thomas and got accepted to their clinic, but they’ve measured my cervix normal thus far and also don’t know why I seem to be going into early labour so early. No one can explain it.

Did you ever get any explanations or reasons? Did you have any more children? We have no living children and are facing a childless future :(