Recurrent miscarriage support - tests, treatment, trying again - thread 8

[Bakingtins]

Welcome everyone, pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of company, information, moral support, tea or sympathy.

Can I suggest we start page 1 with a recap of where we are all up to, because my fuddled head can't keep track?

PS. Downstairs yes: the 'everything feels fine but what if they scan me at 6 weeks and there's nothing there fear. Got it too. Horrid.

Mine does similar to yours squiz They are always messing things up there, computers are down a lot so repeat prescriptions take ages to go through to. It's not really worth even swapping GP's as it seems to be standard wherever you go now! At least you have been feeling a bit sicky (good sign!) I have had increased CM to but do you do what I do (sorry if tmi) feel it, then panic it might be something else then run to the loo for a knicker check?! I did it yesterday at work! I am terrified of it being another blighted ovum/or baby's heartbeat isn't there. This is probably the worst I've been with any of the pregnancies!

Downstairs yes!! If I feel anything there I assume it's a bad thing, run to the loo and it's CM.

Please someone confirm I'm being paranoid here... Madness of the day: going to visit a friend who lives in central London tomorrow, also a colleague has a birthday celebration in the West End I'd like to swing by. But for some reason (well, because my last Jan/Feb loss followed a trip to central London) I have in my brain that such decadent, go-getting day would surely place me in all sorts of risks and I am being reckless and selfish to go.

Knowing 100s of pregnant women commute DAILY to central London, and if the birthday was in a local restaurant/pub of course I'd go.

You're being paranoid. Glad to be of service. and I didn't put off booking in for weeks because I started to miscarry at a previous booking appointment. Oh no.

Agreed. But if you're feeling a bit fragile its ok to give yourself a break and just not go. Who cares if the reasoning is nuts! ;-)

I keep finding myself thinking that despite BFP that faded to BFN in the new year, followed by AF/ heavy bleed, that because i am tired and bloated and nauseated, i must indeedy still be pg (in a medical miracle kind of way). and its nothing to do with staying up late and comfort eating. And yes, i do know how nuts that is.

Dear Squiz,
You are being paranoid. Stop. Enjoy your day out, it will be wonderful and a good distraction.
Xoxo,
Your good friends here on the thread

Squiz - enjoy your day out. Hope you manage to relax and have a nice time.

Thank you oh sane and wise ones! :)

Squiz. Enjoy London. Glorious here today.

squiz hope you managed to relax and enjoy London :)

I'm 15+1 today and as of yesterday my morning sickness has gone, you ladies that have other children is it normal for it to all of a sudden just go? I suppose for a couple of days before it wasnt quite as bad and I still havent got much of an appetite but normally I feel ill on a morning (feel mildly queasy now) and am violently sick a couple of times a day. I'm just worrying about why it's gone, mad I know since I've been ill since week 6/7 I should be glad I'm feeling better I just can't help worrying something is wrong. Somebody slap me and tell me I'm being silly please!

Thanks all! Had a really good day shopping and a nice evening sipping two pound fecking fifty lime and soda. Up at 6am for clexane time ... Then straight back to bed for 2 more hours!

Dh spent the day at home with beer, runny cheese and seafood then hid the evidence. Bless.

Butterfly sorry no idea about the sickness. I'm only coming up 6 weeks. Hope someone can help! (On topic of 6 weeks stupid GP referred me to St Mary's booking in not EPU, got letter ... yet another 'jinxed it' merltdown but just emailed explaining to st Marys the mix up and asking them to sort it internally as I have no trust in the admin at my GP).

butterfly don't worry, it's normal for sickness to wear off now your placenta is doing all the work. You are supposed to emerge from your MS and bloom didn't have MS but still waiting for the blooming
You should have a 16 week appt soon and hopefully you'll hear a lovely heartbeat, that has got me nicely through the last few weeks but now the doom is upon me again for scan on Friday. Ridiculous really, I can feel lots of little wriggles, but I still think they'll find something catastrophically wrong....we're all as paranoid as each other!

squiz glad you beat your demons and had a nice time in London.

This is very long and very sad, stick with me!

The last eight years have been a long and challenging journey for myself and my husband. I will aim to keep this brief and factual. I have no doubt that you will be able to appreciate the huge emotional impact running through it.

• May 2005 our first child was born. Induced at 38 weeks 5 days. I had obstetric cholestasis. All was fine although he was on the small side (just under 5 pounds). We stayed in hospital for 10 days trying to sort out his feeding and were then allowed home. All was good but our little boy was not putting on lots of weight, the health visitor was mildly concerned. At 12 weeks, the day after his immunisations, he seemed unwell -initially I put it down to the injections. He then went downhill - difficulties with breathing. We rushed him to a and e where he had a barrage of tests over the next 3 weeks. He was put into PICU but after a few days we were moved onto the general ward - we thought he was getting better. Another episode of breathlessness and we were back on PICU. After about 3 weeks we were left with two possible causes - tumour or a rare genetic disease (SMARD1). An MRI confirmed that it was not a tumour and SMARD1 was diagnosed. He died after 5 weeks in PICU. About two weeks after he died we received genetic confirmation that he had SMARD1. Each of our pregnancies has a 1 in 4 chance of being affected. SMARD can be tested for via CVS during the 12th week of pregnancy.

We decided that we wanted to have more children. Sadly since our son died this had been the pattern of our pregnancies.
-Miscarriage (about 6 weeks)
-Miscarriage about 10 weeks (detected at SMARD screening test - no heartbeat. There had previously been a heartbeat at the early dating scan)
-Termination - the baby made it to the test but had SMARD. We terminated the pregnancy as the baby would have died like our son.
-Miscarriage about 10 weeks (detected at screening test - no heartbeat. There had previously been a heartbeat at the early dating scan)
-Miscarriage about 9 weeks
-Miscarriage about 10 weeks
-PGD (basically IVF but with a screening test) - resulting in 3 SMARD free embryos, one was implanted. This resulted in a positive pregnancy test but then a miscarriage at about 9 weeks. It may have been a chemical pregnancy (no scans - my choice)
-1 embryo implanted into surrogate - negative test result
-Natural pregnancy which made it through the screening test and all was fine! We really thought this one would make it! Sadly at 20 week scan the baby was very small and it looked like it wasn't going to make it. Two weeks later it had died.
-Miscarriage at 9 weeks.

The miscarriages are not linked to SMARD and we have been told that the miscarriage at 22 weeks was not linked to our other recurrent miscarriage issues. No reason for any of the miscarriages have been found. We have had tests at our local hospital and privately by Professor Regan. More recently have had nk cells test by Shehata and Quenby which were high and both recommended steroid treatment. We also have one frozen embryo left. What to do? At the mo trying naturally but I am nearly forty one and time is not on our side. Just had 3 months of taking progesterone but no BFP.

As an aside I am rhesus negative. Just can't help but think someone has missed something.

Grateful for any thoughts.

Many thanks for reading.

Best wishes to you all. Xxx

Ac, such a sad tale. I'd be tempted to have the embryo implanted and then proceed with the treatment for the nk cells. It sounds like you have a range of things going on. You must be an amazingly strong person. Best wishes.

ac

AC how awful for you. I would agree with just but that's based on gut reaction alone. Fx for you.

ac so tragic and no one should go through what you and your husband have faced. You must be an amazing unit together. What have the doctors suggested that you do - is there some consensus amongst them? I hope you find some answers. Hugs

No concensus at all really. Guys are very anti any nk treatment (that's where the embryo is), Quenby is convinced it is an nk issue. Never actually saw Dr. S was seen by someone else in his clinic and wasn't very impressed to be honest. I think there is a fear of using the embryo as it is the last one which we know is free from the genetic disease. Also very difficult to try naturally knowing that if it doesn't miscarry we still have the 1 in 4 chance of it having SMARD. Have to move forward in some way this year and probably accept that it isn't going to work out. Very difficult after everything that has happened and after trying so hard.

Oh ac
I cried when I read your history. What a journey and to lose your son like that.
Is there anyway you can have the embryo implanted and then go elsewhere for Nk treatment?

butterfly86 i was never physically sick with my DS but often felt like I wanted to hurl. It stopped around week 12 and came back again at week 30!

squiz glad you had a good day in London. Bless your DP hiding the evidence! How you feeling? When is your due date btw?

ac your story is very sad, so sorry to see you in here. you will find everyone is so lovely and supportive here!

No updates from me apart from I did another conception indicator (such a loser) and it now says 3+... the last one (blighted ovum) never budged past 2-3 weeks. PLEASE let this be a good sign.

Downstairs my EDD is early September. Feeling mildly worried (as per) because I had a back-twinge and some of my muscle issues are APS linked, but of course the clexane isn't going to have stopped working and I did walk around in the cold in high heels this weekend! Going to ring my GP in a moment to give them the correct number for the EPU which I found on google which I really shouldn't have done but don't trust them to. It's probably a bit late anyway! I'm going to the RMC on the 22nd. I hope they aren't cross with me.

ac I know very little about this but maybe getting Guys and Prof Quenby to discuss a possible plan might be a good idea. Lots of people are still sceptical about nk cells but some people on this thread have been to prof Quenby and only have good things to say. I've heard mixed things about Mr shehata's clinic.

squiz I am confused. I thought once you were a patient at ST Mary's you just get seen at their EPU (which is