[Mummytoone]

Hi Peter

I know you are away at the moment and Im not sure when you are back.

We had our first IVF 2 months ago, 19 eggs collected, 15 embies. 2 put back and 10 frozen on day 2 mainly at 4 cell. Out come was negative.

This week we have had our first FET. I was totally unprepared for what has happened this week........ They defrosted 5 initially the day before transfer to see what they did overnight. Initially we had 100% thaw, they all lost at least one cell but we were under the impression this was normal. The next morning as we were about to leave we had a phone call from our embryologist to say that all 5 embies had stopped dividing and all appeared to be degenerating. I was devastated to say the least, we then asked for the remaining 5 to be thawed. The embryologist phoned me back 5 minutes later to say 4 had suvived 1 had stayed 4 cell and the rest had lost at least one cell, one had even gone down to just one cell. We decided to go ahead with the transfer and take pot luck with which ones they have put back (maybe this was a mistake)

I had the best 3 cell put back and the 4 cell. We asked for the remaining 2 to be kept in the lab until today to see what they did. Having just spoken with them now I have been told that the 1 cell had dividided into a 3 cell and the 3 cell into a 6 cell. Obviously this is very slow and they will be destroyed tomorrow after there final check. I have been told this is to do with the culture they are in and not because they are poor quality.

I am just devastated this has happened. I was totally unprepared for this to happen and new maybe 3 or 4 could perish but not nearly the whole lot. Obviously I am convinced the same is happening to the 2 inside me, lets face it it would be a miracle if they were different.

I have been assured by my hospital that this is simply the freezing/defrosing process and nothing to do with the quality of my embryos. Would you agree wiht this? I keep reading in places that ones that die means that they wouldnt have made it anyway which keeps worrying me. I also keep reading about girls who have one or two defrosted and they both suvive, I thought I was being generous asking for 5 to be thawed.

I jsut feel so guilty in freezing them in the first place and wish we hadnt ever done this.

Do you think in future we should only freeze any embryos making it to blast stage?

Please can you give me your honest opinion of this situation and what you think our next move should be.

Thanks so much Peter

Lou

 

[Mummytoone]

P. S Had letter this morning from my hospital to say 9 embryos suvived!

Phoned hospital and was told a computer mistake and yes only 2 did suvive. Salt rubbed well in.

Hope these mistakes dont happen with the embryos themselves.

 

[Sue MJ]

Lou,

OMG how tactless! Glad to see their admin work is checked/peer reviewed before issue!

Hope you're doing OK and managing some of those thoughts.

Take care,

Love,

Sue

 

[Hellen]

Lou

I can't believe that clinic!!!! Hope you are bearing up okay.

Hellen

 

[Tara]

Lou,

Haven't really been keeping up with the boards, but just read this since I have a friend dealing with frozen embryos. I hope you're hanging in there and I'm praying for the best for you. Just sucks that you have to deal with all this.

Love,
tara

 

[Mummytoone]

bump, not sure when you are back

 

[Mummytoone]

bump

 

[Sue MJ]

Lou,

Peter has only recently returned from Canada and has been at the Baby Show in Birmingham over the weekend. I am sure he will respond to you very shortly - I did mention to him that you had posted this to him.

Hope you're OK.

love,

Sue

 

[Mummytoone]

Peter

thank goodness I can see you are logged on.

I should just add that this cycle as expected is Negative we are having a few month break from all of this and am very keen to hear what you think our next move should be.

Thanks in advance

Lou

 

[peter]

Hi Peter

I know you are away at the moment and Im not sure when you are back.

We had our first IVF 2 months ago, 19 eggs collected, 15 embies. 2 put back and 10 frozen on day 2 mainly at 4 cell. Out come was negative.

This week we have had our first FET. I was totally unprepared for what has happened this week........ They defrosted 5 initially the day before transfer to see what they did overnight. Initially we had 100% thaw, they all lost at least one cell but we were under the impression this was normal. The next morning as we were about to leave we had a phone call from our embryologist to say that all 5 embies had stopped dividing and all appeared to be degenerating.

This happens sometimes

I was devastated to say the least, we then asked for the remaining 5 to be thawed. The embryologist phoned me back 5 minutes later

longer than this I hope!!

to say 4 had suvived 1 had stayed 4 cell and the rest had lost at least one cell, one had even gone down to just one cell. We decided to go ahead with the transfer and take pot luck with which ones they have put back (maybe this was a mistake)

I had the best 3 cell put back and the 4 cell. We asked for the remaining 2 to be kept in the lab until today to see what they did. Having just spoken with them now I have been told that the 1 cell had dividided into a 3 cell and the 3 cell into a 6 cell. Obviously this is very slow and they will be destroyed tomorrow after there final check. I have been told this is to do with the culture they are in and not because they are poor quality.

What?

I am just devastated this has happened. I was totally unprepared for this to happen and new maybe 3 or 4 could perish but not nearly the whole lot. Obviously I am convinced the same is happening to the 2 inside me, lets face it it would be a miracle if they were different.

This sounds like pretty poor freezing and thawing. I would complain.

I have been assured by my hospital that this is simply the freezing/defrosing process and nothing to do with the quality of my embryos. Would you agree wiht this?

No, see above

I keep reading in places that ones that die means that they wouldnt have made it anyway which keeps worrying me. I also keep reading about girls who have one or two defrosted and they both suvive, I thought I was being generous asking for 5 to be thawed.

This is strange. Normally we thaw 2, see how it goes and then decide from there. To thaw 5 immediately means that in theory you could be throwing away 3 perfectly good embryos if all surivived.

I jsut feel so guilty in freezing them in the first place and wish we hadnt ever done this.

It's not your fault!

Do you think in future we should only freeze any embryos making it to blast stage?

I prefer balstocyst freezing and transfer

Please can you give me your honest opinion of this situation and what you think our next move should be.

Complain, ask for a free cycle and complain to HFEA if they don't listen

Peter

Thanks so much Peter

Lou

 

[Mummytoone]

Peter

It was honestly 5 minutes, 6 or 7 maximum, why what does this mean?

Is the Lister not a paticularly good clinic?

There success rates are certainly not as good as they were.

 

[peter]

Peter

thank goodness I can see you are logged on.

I should just add that this cycle as expected is Negative we are having a few month break from all of this and am very keen to hear what you think our next move should be.

Have a holiday, relax and then come and see me in Canada!!
Seriously though, you should consider changing clinics becuase I don't think that you are getting the service you deserve at present.

Peter

Thanks in advance

Lou

 

[peter]

Peter

It was honestly 5 minutes, 6 or 7 maximum, why what does this mean?

It takes about 1 hour to thaw embryos properly.

Is the Lister not a paticularly good clinic?

Pass. It doesn't sound very good to me!

Good luck!

Peter
There success rates are certainly not as good as they were.

 

[Mummytoone]

Thanks Peter for all you advice.

I had been told by my clinic it takes 45 seconds for the embies to defrost so.................

I really dont know how we would go about complaining, I mean we are not experts of all this stuff and prob wouldnt be able to justify our selves with our complaints. I mean they should be the experts shouldnt they? It seems they are not from what you say. I will have to give all of this some thought.

I really apreciate your advivce with all this, it goes without saying you have been greatly missed in here!

Thanks again

Lou x

 

[Hellen]

Lou

I am so sorry that this has happened to you. From what Peter has said it doesn't sound as if you have been treated very well or professionally.

We haven't been in the position of having/wanting to complain but I just thought that maybe if you decide to it would help to write everything down and work through things one issue at a time with the clinic. This way you would be sure to cover everything you wanted answers to.

You don't have to be experts, when it comes down to it you are the "customer" (for want of a better word) and deserve better. You don't have to justify wanting answers about your embies.

Whatever you decide, I hope you manage to take some time out.

Take care of yourselves

Hellen
xxx

 

[peter]

Lou

I am so sorry that this has happened to you. From what Peter has said it doesn't sound as if you have been treated very well or professionally.

We haven't been in the position of having/wanting to complain but I just thought that maybe if you decide to it would help to write everything down and work through things one issue at a time with the clinic. This way you would be sure to cover everything you wanted answers to.

You don't have to be experts, when it comes down to it you are the "customer" (for want of a better word) and deserve better. You don't have to justify wanting answers about your embies.

Whatever you decide, I hope you manage to take some time out.

Take care of yourselves

Hellen
xxx

Well said Hellen!! This is exactly the way to approach this and don't forget to mention that you may complain to the HFEA if you do not get a fair hearing. This focusses the mind of the clinic wonderfully!!

Regards,

Peter

 

[Mummytoone]

Thanks both of you, I have made my follow up apt for 6 weeks time and will think about the letter
Lou x

 

[Hellen]

Lou

Glad you have got a date for your follow up appt. Try and enjoy your time out and look after yourselves.

Hellen

 

[Fee]

Lou (thanks for IM)
I've been following this with interests as you know - you and I being in a similar boat with the lab.
I'll also write down our (dh & I) concerns - and in the end we can vote with our feet if the Lister don't take notice and at least give us answers and reassurance.
Hoping you have a lovey time away - that the sunshines on you and that you and your dh have some really special times together - you deserve gold * treatment!
Fee xxxx