lost 4 babies and am completely lost

[aMuminwaiting]

I went with my DH for my routine 12 week scan on Monday. The baby had died four weeks earlier and they sent me for a D&C. Every time we lose a baby it's like being in a nightmare that we can't wake up from. Our first was almost 22 weeks and I had a prem labour in hospital. I was alone because they'd sent my husband home to fetch me some books and things. They didn't even warn him when he got back that our dead son would be laying next to me. The next baby I lost at home at 11 weeks. My DH took him/her into the hospital thinking they would do testing as my first miscarriage was so late. We found out a week later that the form they got him to sign in his grief ridden fog wasn't for testing it was for them to dispose of the baby. The next baby was miscarried at my parents house at 7 weeks. This time my Aunt was staying with us so she took control and told the hospital that this baby had to be sent to Guys for testing and even had to tell them how to store it because the doctor on the phone told me to stick in the freezer until Monday! My DH and I were karyotyped. We were told our results would take four weeks and the babies about seven weeks. 15 weeks later and we still have no results. Straight after losing our third baby I got pregnant with our fourth. I was put on aspirin and cyclogest pesseries. I felt more sick than ever and had no bleeding at all. We thought this was going to be it at last until Monday sent us crashing down to earth. The anesthetist and a surgeon had separately come to speak to me about the procedure many hours before I went in and I'd told them both that the results from my third baby had clearly been lost in the system so please test this baby and not make this life a complete waste too. Just before they knocked me out in theatre I said "please tell me you're going to test this baby" and she said "oh no one's mentioned that". Yesterday my husband spent hours trying to get through to the consultant who had taken over from the one we saw last year. All he got was answer machines. I've been trying for 15 weeks and all I've ever got is put through to an answer machine and never called back. I've never felt so invisible. I honestly don't know what to do anymore. We won't try again because it seems pointless at this stage to keep making lives that will never make it. At the same time this need to be parents is tearing us both apart. We are so alone and no one will help us.

Oh I'm so sorry AMum. What a horrendous time, and the doctors sound like they're letting you down on top of your losses. Is this a recurrent miscarriage clinic?

I'm just so sorry for your pain. Big hugs.

I am so so sorry to hear about all the heartache that you have been through, that really does sound truly awful.
It doesn't sound like you are getting very sympathetic treatment from your hospital either - could you ask to be referred elsewhere? Have you had the whole range of recurrent miscarriage tests, or just karotyping? Positive results from the karotyping are rare, but blood clotting abnormalities are much more common, and there are treatments for that. When I had my tests done, it was two simple blood tests for which the results were available within a week. There are people on here who have had recurrent miscarriages and have gone on to have babies with the right treatment.

I really think, if at all possible, you should ask to be seen at a different hospital if you reconsider trying again. Not all consultants are the same. I also think you have been treated rather badly and you may want to get in touch with PALS. At least complaining gives you a chance to vent your feelings a bit.

O love I am so sorry. I understand how alone you feel. I am out of date ( went through similar 15 years ago)

I am so sorry. This is an awful story. You have received terrible, terrible treatment at a very horrible time in your life.

Having experienced a small amount of what you are going through (mc) and long-term ttc, I just wanted to reply so you didn't feel alone. I am not sure I can offer you any good advice - there will be some great people on MN who will be able to do that - but you are definitely not alone.

It took three years of repeating the same tests/nasty procedures when I was ttc to try and understand what was going wrong with me. I felt completely alone and entirely mad at the time. I spent my days researching Google and my nights crying. In the end, my husband and I put off buying a house for me to see someone privately - not because of the different treatment available, but just to pay to have someone look me in the eye and act like they cared. I never wanted to pay for healthcare but I just needed someone to treat me like this was important to them (and if I had to pay for that, fine).

I actually went to the doctor/NHS hospital from that point onwards and waited for them to print me out test results and letters so I could compile my own file on my health, as I felt only I could be trusted.

So you are not alone in having bad experiences. I wouldn't say I have experienced anything on the scale you are talking about but I have certainly felt very depressed about how little doctors/hospitals seemed to care about something that was the most important thing in my life.

But I was not alone and neither are you. It sounds like your DH is a very supportive person and hopefully people on MN will have some practical suggestions for you. So so sorry that you have had such terrible times.

I was at Maidstone before and moved to Tenterden so have been with Ashford hospital this time. I've had two consultants at Maidstone, the first thought I'd done something wrong to lose my first baby and was the most awful excuse for a human being I've ever come across. He kept saying "you'e sure you haven't been in a car crash or something"...seriously! The next was great and really listened to me and said he'd be with me every step of the way with my third pregnancy but retired before I got pregnant again.
I've had the blood clotting screenings done twice and they were normal, I don't know what the results of the karyotyping are. I should have been refered by my GP in Bearsted to the recurrent miscarriage clinic but she said she wanted to wait for the karyotyping results first. The woman at Ashford said the results had been sent four weeks after DH and I were tested but my GP never requested them so they were sent back (but back to where I have no idea). My DH has been in the new surgery every week asking if they've found anything out yet and has been told every time "it's being chased up". I am so angry and want to make a complaint but who do you complain to when everyone has let you down?!

Thank you. I know I'm not the only one. But it feels like it. I wouldn't wish this on anyone but when they get me to sit with pregnant people who are all laughing and joking when my eyes are red raw from crying it feels like I'm the only person who can't keep my babies alive. I wish they could just have a side room or something to wait in rather than let me cry like a made person in front of a hospital full of people. After one miscarriage I remember sitting in the scanning waiting room and crying on my DH's shoulder. A woman turned to her massive tattooed partner said "what's er bloody problem?" and I thought, is there a single brain cell in her head?! I'm turning into someone else now. I see pregnant people smoking and think what kind of planet lets someone so selfish have a child when I do everything right and still have none?

Your GP should have referred you regardless of the karotyping results. Ask to be referred to the recurrent miscarriage clinic again. All women who have had 3 miscarriages are eligible, and the fact that you have had a late loss makes you even more eligible. Googling and printing the NICE guidelines and taking those to a GP in the new surgery.

PALS (patient advice and liaison service) is who to complain to. I don't know what happens if you do that but it might be worth a try.

Thank you so much Kat. I fired off an email to my local paper this morning and then had a massive crying frenzy. I feel like I've been hit a bus right now. Why can't we just step off the world for a while and get a break?

I am so very sorry that you are going through this. Life isn't fair. People say that all the time, but only when you're in the middle of a really crappy situation not of you own making do you really truly realise it's true. Life isn't fair. You don't deserve this. But it's the only life we get.

Please look after yourself and allow yourself to be really, very and probably un-characteristically sad. You have the right. You have more than the the right. Rant and scream and to hell who cares. I've stopped trying to put a brave face on things with nearest and dearest. Why the hell should I? It requires an effort that I currently lack. Tell any unfeeling old trout in a waiting room in no uncertain terms what your problem is, if you feel like it... it might make you feel slightly better. And you can go back to being a nice person when you feel stronger.

I don't know how old you are. But please don't give up hope right now. Apart from kicking the hell of the medical profession you have encountered along the way, I wouldn't make any major life-affecting decisions right now about whether or not to try again. Drink some wine. It helps.

Re complaining, I would find out who the bereavement midwife is at the hospital (you encounter these after about 16wks m/c) and they are trained to help. Just because you suffered your m/c before 16 weeks I can so no reason why you shouldn't be able to access their services. At least they should be more sympathetic. With my 3 pre-16wk mmc ierpcs t was very much in>out, off you co, cope. With the latest post 16wk there has been more support.

Also, write a formal letter of complaint to your GPs practice manager. Ring the receptionist to find out the name.

My best and most heartfelt wishes to you and your DH.

I am raging on your behalf. What dreadful dreadful treatment you have received. I have had 2mmc - last one was at 12 weeks too. I second getting in touch with PALS at the hospital you were seen in. I would also go through the switch board at the hospital and ask to be put through to your consultants secretary. Tell her you insist on speaking to someone from his team, and also inform her you will be putting in a complaint.

Go to your GP - insist they find out your karyotyping - they can ring the lab direct. It does not take 15 weeks - I have had mine done and it took 6.

Don't give up yet - be sad, and grieve - and then when the anger arrives (which it will) let rip at the profession that has let you down so badly. I wish you all the luck in the world xx

PM me if you want - I have been there a bit so if I can help I would like to xx

Oh muminwaiting I am so sorry for what you have been through. That is terrible, and very inconsiderate and unprofessional of your hospital.

I can sympathise, I had 4 consecutive mc's after my DD, and they left my world turned upside down. I am having counselling to help me cope with the grief, and only today I used the exact same words you have use "I wouldn't wish this on anyone". So so true.

You haven't done anything wrong at all. All you have done is put trust in your doctors, and have listened to them. You have put your trust in your doctors, which is what ANY woman would have done. It is just unfortunate that they haven't given you the support you needed.

Blood karyotyping should take around 6-8 weeks, and the blood clotting tests take a bit longer. In all, you should have had your results back in 3 months. Like the others have said, you need to start pushing your GP and your consultant for results now. It's really sad, but alot of the recurrent mc sufferers I have met on here have had to lead their own treatment.

Make an emergency appointment with the GP and tell them of your ordeal, and don't ask them to ring the consultant TELL them to ring the consultant, and email him everyday until you get an answer.
This is totally unacceptable and I am really angry for you.

If you'd like any kind of advice about tests or treatments please feel free to PM me, or there are other women who have been through what we have been through on the recurrent miscarriage thread in this topic. You will be given loads of advice about what to do there too.
I must say, your husband sounds like a gem, and you are very lucky to have his support through all of this and you will get through this, I promise you.

Well a few days have passed and the morphine must be well and truly out of my system because the pain is very bad now. The pain in my throat where they must have put a tube down is making me talk like a blues singer, my hand is all the colours of the rainbow from the cannula and it feels like someone's trying to pull my insides out with a metal coat hanger.

Of course the request to be left alone for a while was ignored by the MIL just like every time. However this time the back door was locked and my DH wasn't there to let her in. I closed the curtains, barrackaded myself in and for once I had the chance to let myself cry like my life depended on it...no audience, no one reporting back to the masses on my mental instability. She did hunt him down at work but he was strong and told her that coming to the hospital the other night when told not to was selfish and having a go at him for not finding out why this keeps happening didn't really help him in any way. I think they've really done it this time. Even in him the kindest man in the world I don't think there's any more forgiveness left.

So today I am going to leave the house and walk my dog. I'm going to get some essentials from the supermarket and book two appointments at the surgery. One for me to shout (throat permitting) at them and one for my husband to have a meltdown to a perfect stranger. I'm so scared that he's teetering on the edge right now. He needs someone removed from all this to speak to. We tried at our old surgery and all they did was give him prozac. So, bath, dressed in something other than pjs, doped up on painkillers and off into the world. I hope all the pregnant people stay in today. Why does it feel so scary?!

Can I ask, all of you ladies who have been through this. Did you get your babies in the end?

Muminwaiting, yes, I was eventually lucky enough to have my DS who is now one. My doctors could never figure out what was wrong for me but through trial and error, they found a course of treatment that worked on one occasion.

I know it is so hard after mc and endless disappointment (and like I said earlier in the thread, I don't think I've had it nearly as bad as you). I too used to see pregnant people and wonder with total despair how it happened naturally for them and not me.

I just echo the advice everyone else has given - talk to your doctor. Your care has been terrible. Allow yourself to be sad and angry because it isn't fair.

My DH was always incredibly supportive and one of the things I used to hold onto in my darkest moments was his utter conviction we would be parents. He used to say that it didn't matter if it was through me giving birth, surrogacy, adoption or whatever, we would have our babies. And for me - I don't pretend everyone would feel like this - that helped me feel we would survive. I wanted to have my own babies but whatever, I came to believe we would be parents even if it was a hard road to get there and might not be the conventional route. And what we went through together as a couple made us strong and united.

Obviously on my most depressive, dark days I did not feel anything positive at all. And I needed to have my sad, angry moments. But yes, we did eventually get our baby.

Take care. X

Thanks, needed to hear that. Booked doctors appointments for me and DH today. Have my list of questions at the ready.
Haven't heard from you in ages LunaticFringe. I think the last time I did you were pregnant with your ds. Will try and rest up over the weekend so I am fighting fit for the showdown with the doctor.
Thanks everyone. Needed some positivity.

Hope the appointments went ok. If you are not happy ask to have a meeting with the practice manager to discuss and to get them to do the donkey work/ leg work. Agree re PALS at the hospitals for complaints / answers.
Met Lesley regan liked her alot seemed very gentle and sympathetic/ empathic

Good luck hope the physical pain diminishes and just let your body take over for a little while on the mental pain
Hugs

This is a disgrace, can't believe how poorly you've been treated. Tbh even good rmc treatment feels pretty poor, as often you are still left with a "it's just your luck" response. I think instigating complaint procedures would be a good idea as I think they are likely to make a lot of moves to sort out the tests etc when a complaint is underway. I don't have a good news story for you, I've had 1 ds and then four mc, but just wanted to say I haven't given up yet and, although hope is dimishing a bit, it is certainly still there.

Last night I was doubled up in pain. I couldn't stand up fully and couldn't even sit down to pee. It felt like my insides were trying to push themselves through my bowel to freedom! I've managed two big bowel movements since then and the pain's eased right off. Is it true that anesthetic slows down the digestive system? And if so, how long does this last? I thought I was going to have to go to A&E it was so bad.

Oh how awful! I don't really know any answers, is it worth phoning that nhs line do you think? Must be something you could take for it. The fun just keeps coming, doesn't it?

I know. I feel sometimes that I'm taking fun away from other people!

Well I saw the most senior gp today and he was so lovely. He was really kind and said that he's aware Maidstone are pretty crap but this was a whole new level. He's calling them today and getting them to send everything they have to Ashford. Amazingly he said they did actually send this last baby off for testing! He's also checked that the follow up appointment has been booked for six weeks. He said that the team at Ashford are really good so he wants them to talk to me about where we go from here test wise because it's not his field of expertise. He said he hoped that I could get everything I need in Ashford but if not then he will refer me to London because I need answers.

He also told me not to give up hope because he and his wife lost 13 babies before having their three children. He took my urine sample and said he'll get that off asap because it sounds like I may need antibiotics. DH was so low last night, he kept throwing things around the house and looked like he was going to explode. He said that he's tired of always being at the start of things but life never actually moving on. I get the feeling though that this is life. We try different things out and sometimes they work out but more often than not they don't. All the stuff in between is life. I hope the Dr is just as good at giving DH hope on Wednesday. I think he needs it even more than me right now.

Hello muminwaiting,

Just checking in to say that I'm glad you finally saw a GP that took your case seriously and (also importantly) treated you like a human being. It makes such a difference. Especially given the treatment you've had so far.

I hope the doctor is able to give your DH some hope too when he sees him. I know my DH, for all his positivity, sometimes used to get bashed down by the relentless stress of it all.

Hope your physical pain is also improved.

Take care.

I really hope so too. Last night he came home from work completely furious. A colleague was breaking concrete a little too near a public car park but only tiny fragments were kicking up. A man who was driving out stopped his car to scream at his colleague and say he was going to sue him for damages. Needless to say the car was a mess and unless said colleague had been smashing the whole block of concrete over the guys car, it clearly was not down to him. Anyway, my DH calmly walked over to the man and politely gave him his name and where to make all complaints. He then said that they both knew the damage was there before but he wasn't going to argue about it. He noticed that the man was holding a baby on his lap whilst driving out, no restraints at all and an unrestrained child was sitting in the back of the car. His car had gadgets and pointless rubbish galore but no car seats for his kids. DH marched over to the police station and reported him. The police spoke to him like he was wasting their time and he said he was sure they wouldn't do anything but the guy drove like a maniac and his kids probably weren't long for this world. One of the reasons I love him so much is because he stands up to idiots and does the right thing. But I'm ashamed to say I had a complete panic attack when he told me. This is a very small place and the guy saw him coming home. He had a woman in the car when he pointed DH out and guess what? Yes the baby was sitting on her bloody lap! I am petrified that some moron is going to hurt him or god forbid, kill him. He's my world and if I could keep him home wrapped in bubble wrap that would be great! Come on lottery win, need to buy big fortress in the middle of nowhere where we can be disfunctional but happy together. Isn't it bad enough that no matter how much we try and how I do everything I possibly can to keep our babies alive they all die whilst people who couldn't care less about their kids get them in the first place. It doesn't make sense.

Spoke to woman called Anna at the genetics lab at Guys. She said individually our chromosomes are normal. Unfortunately we don't know if they successfully combine to make a baby because the material sent was not fetal. I don't understand that because the fetal sac was complete, I saw it. When I said I'd had a D&C with the fourth baby on Monday she said she'd call the hospital straight away and get it sent to her. She thinks there's some other reason this keeps happening though and doesn't believe it's a genetics thing.

Hi again. I just want to say - I know exactly what you are thinking when you say you want to keep your DH wrapped up. I would do the same to mine, and would not let him out of the house at all! He works away during the week and I hate it as he has to drive so much, and have a complete irrational fear someting would happen to him. I doubt this other bloke will do anything at all - they tend to be all talk and no trousers. Be proud of your DH for standing up to people like that. He sounds fab.

On other matters - I am glad you have spoken with someone in the lab - maybe you can get some answers when they get the other samples sent over. xx I called my consultant secretary today and I have an appt on 27th of september. I had my ERPC on the 18 th June, and still no periods. I think I am actually going round the twist with the waiting.