PGD

[Italophil]

Hello, I was wondering if anyone had experience or recommendations for preimplantation genetic diagnosis in London. We have a recurrent case of triploidy and would like to find the best place to perform ICSI with PGD in London. Any views? Thank you so much for your help!

hi hun.
im sorry i have no experience of this but i just wanted to bump up your post to see if anyone else can help.

can your GP or local Gyne not recoment a suitable place for you in london?

good luck with getting the answers you need
take care x

Hi there

Guy's is reckoned to be one of the leading specialist units for PGD - this page has some details.

HTH

I would start with Mohammed Taranissi but you will need to push hard to get to see the great man himself. i have a friend who looked into this...i think they can test for some, but not all, triploidies. From memory there may be a clinic somewhere else in England (nottingham, perhaps?) that can test for a slightly wider range, but Taranissi should be able to tell you the very latest.

I'm looking to do PGD at the Bridge Centre in London. They and the CARE centre in Nottingham are the two centres in the UK that use array CGH rather than FISH - it has the advantage that it can test for all aneuploidies, not just the one(s) you might be at specific risk for... Bridge reckon that it will increase their success rates as it will eliminate the IVF failures due to random aneuploidies... which they think might be quite common only we don't know because if you're trying naturally and you have an implantation failure, you just think you didn't get pregnant.

Guy's have the most experience with PGD, but they still use FISH, the old testing technique. I mean, it's worked for loads of people...

the HFEA website has data on all the centres - you can search for PGD - and it has the success rates broken down by age etc. Very helpful.

pinguin that's really interesting information, thanks.
can i ask anyone looking into this how they know that PGD might help? is it following tissue testing on embryos after a miscarriage? at what stage can the doctors tell from tissue testing whether there is a triploidy? (i mean, how many weeks does the embryo have to be when you miscarry for tissue testing to be useful?) I have had 4 MCs but no tissue testing on any of the embryos because a) the NHS doesn't really seem to offer it in our area (though they might through St Mary's and b) in any case my MCs have been early, around the eight week mark, and two of them were MMCs which weren't picked up till a bit later, by which time i don't think (but am not sure about this) the testing is as useful/accurate because of deterioration in the embryo in utero etc. I am really hoping to achieve a natural healthy pregnancy this time but can't get out of the habit of information gathering just in case it goes wrong again...

Hello,

Firstly I'm very sorry for your losses. Not sure if this info. will help. I am about to start the PGD process at Guys. Our first son died of a genetic disease. They are using a sample of DNA from him and our bloods in order to design a suitable test. Guys so far have been very supportive.

Anything else I can help with, just ask.

Hi ac73 that sounds really groundbreaking -so sorry for your loss and glad this is giving you new hope.

sotough, I've got a chromosomal abnormality, a Robertsonian translocation. it means 2 of my chromosomes are joined together. It was discovered after I had 3 miscarriages - they did karyotyping on me and my husband and also tissue karyotyping from the last baby (and I had a missed mc - baby died at 6-7 weeks, but I didn't have the ERPC till 10w 2d, so I don't know if the missed mc thing is such a problem, although you know the NHS, every doctor has a conflicting opinion) and found that the baby had trisomy 14 which is consistent with my genetic thing.

Time for my 2p - if you've had 4 mcs and they've all been documented by the NHS then you should be getting testing for a whole lot of stuff - blood clotting disorders, thyroid, hormone problems, and you should be getting blood karyotyping of you and your husband. Lesley Regan's book is good, although she's very down on explanations which haven't yet been through randomised controlled trials, like there's some stuff about immune responses and killer cells and stuff that she took an age to acknowledge and used to say were rubbish. that realy hacks me off. I mean, I get it, randomised trials are important for the NHS because they can't afford to waste money giving ineffective treatments "just in case." But I can, and I only have one body and one life, and I'd rather hand over the price of a new car to the likes of Taranissi if he thinks he can help where the NHS has failed, even if he fails, because then at least I know I did everything. Anyway (takes deep breath) it turns out I have something wrong with me that the NHS recognises so I can put that rant away.

OK, this is how it went for me: when I'd had the third miscarriage I went in for an ERPC and I got referred to the recurrent miscarriage clinic at the same hospital. I wanted to go to Regan's clinic so they referred me to there. I think that if you have your mc at home (and so have no contact with the hospital) you need to ask your GP to refer you to the local recurrent miscarriage clinic. (Once you're there you can ask to be referred to St Mary's, or just stick with them). Maybe I'm telling you stuff you already know but if you're not currently hooked up with a RMC I'd urge you to go do it, 4 mcs might be bad luck but it might not, and there are a lot of things they can do.

If there's anything I can help you with, any info you want just give me a shout - I'd be very happy to fill you in on any aspect of this stuff that I've been through.

thanks pinguin i've actually been through the whole gamut of tests, both privately and through St Mary's, so i know an awful lot (too much) about the whole scenario with recurrent miscarriage. It's just in my case there has not been a conclusive diagnosis so i was interested in PGD but i suspect it would not make any difference to us as we don't (yet) have any known issues with chromasomal abnormalities. if we miscarry again i will push for tissue testing but i really hope it doesn't come to that.
I completely agree with you about Regan's attitude to NK cells. In fact the consultant I saw at St Mary's described it as "absolute nonsense" which i thought was really off. he's absolutely entitled to his professional opinion but i think it ought to have been expressed in slightly more measured terms. how can he possibly know it's absolute nonsense?!
ah, don't get me started...

sotough, so glad to come across someone else who's had to deal with St Mary's! What a bunch of numpties. They're now, reluctantly, starting to agree that there might be something in the NK cells now one of their mates in Liverpool has done a trial... I hate that about the NHS, there does seem to be a general culture of doing things down if they've never heard of them. My GP even had a go: after I got my letter back from the RMC saying that I had a chromosomal whatsit, I went there to ask to be referred to Guy's for PGD (after, if necessary, a visit to the genetic counsellor) and the doc was like "why do you think you need to go to Guy's? Homerton (our local hospital) do IVF." I left without convincing him. I've been referred to the genetic counsellor who will, eventually, refer me to Guy's. And when the letter gets to my GP I'm sure he'll rub his chin and go "that persistent bugger, she DID manage to get referred to Guy's! Some people just always want to push their luck..."

Taranissi I hear good things about. A mate of ours and his wife had twins under his care - she had immune problems and took (I think) immunosuppressant drugs and all sorts. But it all depends doesn't it?

after my first consultation at St Mary's - in which the guy's opening gambit was (in passive aggressive tone) "So what do you want from us?" and I had to come up with all the ideas of what they might be able to do for me, rather than him having the ideas, i really didn't feel like going back. However, I decided to stick with it and give it another chance and am glad I did. Their testing protocols are a bit different to other clinics and did turn up two interesting things in my case, though nothing conclusive. Secondly you can get weekly or fortnightly scans there if you get pregnant, which is really good. I'm glad i also went private though - after four MCs i just don't want to leave any stone unturned.

sotough, I'm glad you're getting some joy out of St Mary's. They've not got the best bedside manner, but they do the tests properly at least.

Meanwhile, I almost got thrown out of Great Ormond Street about 5 minutes after I threatened to walk out. I had an appointment with the genetic counsellor - which I waited 10 weeks for - and when I turned up she didn't have my test results. I had to tell HER what was wrong with me.

I'd no interest whatsoever in going to the genetic counsellor: when St Mary's told me I had a RObertsonian translocation I got right on Medline to see what it was all about, so I don't need any hand holding, I know I want PGD. But I was willing to go along with it, knowing that the NHS wants to make sure people with my problem fully understand their problem (there is no way for me not to ound arrogant here, right, but I have a PhD in chemistry, so while I'm not that familiar with genetics, it's not hard for me to grasp the implications once I've read a bit). But then, say I really didn't know much about my problem? I'm supposed to know the name of it. Then the woman got confused and asked me whether it was Robertsonian or balanced. It's Robertsonian AND balanced. She said balanced when she meant reciprocal. It worries me that the person who's supposed to advise me can't even get the description of my condition straight in her head.

At the time I was angry because she was crap, but thinking back on it now, I'm actually more angry because she started yelling at me! Telling me "I don't have to take this, I've worked for the NHS for 30 years." The crap I've had to take off the NHS ever since my first miscarriage... and when you finally lose patience they get really, genuinely annoyed. I should have reminded her to be a professional. Reminded her who is the ill one. How dare she try and give me a lesson in bloody manners? I'm paying through the nose for her to get the name of my condition wrong.

I'm getting angry all over again here!

oh pinguin that would have made my blood boil too. I do understand - i was a strange mixture of fuming, and really depressed, after my first consultation at St Mary's when the attitude seemed to be 'what on earth is the point of you being here; there's nothing we can do for you.' etc. I seriously, seriously considered giving up and not going back there but i was persuaded to keep going and it WAS worth it. I now appreciate that I caught them on an off day - half their consultants were absent and it was chaos. The consultant i saw was clearly overstretched and in a bad mood. Shame i was at the sharp end of it, but it did NOT turn out to be representative of the clinic in general and it WAS worth swallowing my hurt and frustration and keeping going.
the NHS can be maddening (my own pet hate is when receptionists simply ignore you, for long periods, while they get on with whatever it was they were doing before you pitched up at the desk - talking to their mates; sorting their paperwork, whatever. i just want to be acknowledged please! even if i have to wait a while afterwards! so simple, and yet...)
but i must say it can also be fab. As an example, my uncle has had a number of strokes and is being cared for in a specialist hospital. he's ready to be discharged but will need 24 hour care in another setting. yesterday the NHS arranged a family meeting to discuss the options for him with us all. They wheeled out no fewer than six specialists involved in his care, all of whom sat in a room with us relatives for more than an hour to discuss his case. Amazing! It was like something out of 'House.' I left with my faith in the NHS reaffirmed.
All you can do is grit your teeth and keep going, armed with the pushiness that your expertise gives you.

Yesterday they wheeled out no fewer than six specialists for a family meeting

hi penguin (or anyone else who has experience with PGD). i have just had my 5th miscarriage (no live birth) confirmed at St Mary's RMC. my husband has a balanced translocation and despite a theoretical chance of 50% to have a healthy baby (well, maybe 35% considering all random problems we could also have, and i am almost 40), we seem to have 100% bad luck. it's early days to think about another pregnancy, and i am very, very fed up with everything. Still, I am now thinking about IVF with PGD. have just read this thread and am wondering whether you had any more experience to share about PGD at either Bridge's or Guy's (or elsewhere)? I am interested in anything ? success rates, reasoning for choosing PGD (I have no probs getting pg, just lose every pregnancy), how you chose your clinic, your experience with the clinic/ staff, comparable and hidden costs, anything.