Pregnant again with same 1 in 4 risk of genetic disorder

[DayToNightBarbie]

Hi, I was just wondering if there's anyone else on here who's terminated a pregnancy because of a genetic disorder and then become pregnant again naturally (ie without pgd ivf and with the same 1 in 4 risk)?

This is the situation I'm in.

I had a termination in January at 13 weeks because my baby had cystic fibrosis.

I'm now 6 weeks pregnant again. I feel guilt and dread and fear. Nobody knows about this pregnancy apart from the hospital who have arranged a pre-cvs scan.

Although the termination of my last pregnancy was the most horrific, sad and bleak time of my life, I've still felt this absolute desperation for another baby (we have a healthy son of 20 months). Now that I actually am pregnant again, the realisation of what I've done is starting to hit.

I know I've been irresponsible and that most people would think that allowing another pregnancy to happen, given that the odds of CF are 1 in 4, is unethical in the extreme. I am fully expecting to be flamed for it.

But I just felt a need to write this down. It's hard not being able to tell a soul in real life. Obviously my husband will need to know around the time of the cvs but I don't want him to know until then as the weeks of waiting last time around were so hard on us both and I don't want to either put him through it or to have to cope with his stress as well as my own.

Is there anyone else who's also experienced this?

you are being hard on yourself. not been in that position but turn odds around and 3 in 4 chance sounds quite good

Im really sorry to hear about the termination
Tbh I think you may be best telling your dh, you should be in this together
Remember there is 3 in 4 chance your baby won't have CF
Fingers crossed
Also

I haven't been in this situation, but I know someone who has.

It must be desperately hard for you. I don't think you have been irresponsible and anyone who gives you a hard time about it should be ashamed of themselves.

Maybe your husband does want to talk about it and is keeping quiet because he thinks you don't want to talk.

A problem shared is a problem halved and all that.

Take care x

Thanks for being kind.

With my last pregnancy, I kept telling myself that the odds were on our side and that it should be ok. That's what got us through the weeks of waiting for the cvs and then for the results. This time, it isn't working. And I have this feeling that I know that the outcome will be the same. I know that doesn't make sense but it feels inevitable.

Am not in your position and I am so sorry you have all this fear and worry from the start.

There is nothing unethical in your choice, I respect your courage in going forward to complete your family.

I can't imagine the stress you are under, I hope you have someone you are talking to if not your dh? I do get why you haven't told him. We are waiting for results and not in the same place at all...his stress has been more than mine, it has made it harder for me. The problem is that not telling is not involving, either of you could resent that later.

I wish you all the best with resolving your feelings, I hope the tests go in your favour and you have real life support soon.

You probably know about the charity arc, they would listen ... I don't think you should be alone in this.

Hello - what a hard time for you. In Feb 2010 I terminated at 17 weeks for downs and a heart condition. It was not CF, which I believe is genetic and both parents have to be carriers to pass on????? CF is in my husbands family, but I didn't look too closely into it myself, not being a carrier.

You are right, it is a scary, dark, horrible time after that operation:( But I think you have done what is right for you to move on. I would not say you are being irresponsible - you have a 1 in 4 chance of the same happening?? Who told you these figures? Again, is is because you are both CF carriers?? On the plus side, a 3 in 4 of all being ok is quite positive:) That's a 75% good chance!

I am 38w pregnant now, and have been through the screening, amnio (chose not to have a cvs as had feeling all was ok chromosomal wise). When i first announced I was P, the hosp gave me a 1 in something quite low chance of having the same - I was petrified, this was purely based on my previous pregnancy and age - after bloods and scan, it showed an echogenic bowel which can indicate CF or downs (hence me getting tested for CF), I was beside myself with fear and guilt. After the Amnio, it came back all clear, so there is light at the end of the tunnel.

I dont' know what your relationship with your husband is like, but I know if I withheld this kind of thing from my husband, he would be very upset and hurt i didn't tell him. My DH found my termination very upsetting, but by god, he was brilliant at the beginning of this one:) not all the time, sometimes he's been bloody useless, but not in a bad way. YOu married the guy for better or for worse - it must be awful keeping this to yourself. He is also there to support you, so, don't' be a hero, and suffer in silence. If you can't talk to him, have you a pal, or relative - be kind to yourself:)

It's hard, but plough on through and take each day. There are many women on here who have been through the same and come out the other side with a happy ending:) There's a good chance you will be one of them. Good luck, and big hug x

I don't think you're selfish or irresponsible at all, some people have recurrant mc but they keep trying, theres lots of people in similar situations i'm sure, and i doubt its that quick or easy to get pgd treatment unless you can afford to go private, then i guess is quite an invasive process :( the odd's are in your favour and keeping everything crossed xx

havingabath sorry to hear that you're waiting for results at the moment. I hope it's good news.

No, I haven't told anyone else in real life. I feel that if I did, it would feel even more real and oppressive than it does now. It's hard not having anyone to confide in but while I keep it secret it's as if it's not overwhelming everything completely. I know that doesn't sound like it makes sense but it feels like the best way to cope just now. I will have to tell DH by the time the CVS test comes round. He won't be angry, I know he won't. He'll probably feel bad for me having gone through the first trimester stress on my own and he'll be very, very worried and scared about the results. This is why I can't handle him knowing about it now - I can just about cope with my own fear and sadness over the next six weeks but not his too.

AdiVic I'm so sorry to hear about your poor little one. That must have been utter hell to get through. Congratulations on this pregnancy and how fantastic that the tests have been clear :)

Yes, it's a 1 in 4 chance of CF with every pregnancy. Like I said before, it was easy to tell myself last time round that 75% was good odds. This time, it really doesn't feel that way.

jezebelle thank you :) Yes pgd is very expensive, about £8000 a cycle and around 20% chance of success even if you don't have fertility issues. Not a realistic option for many people.

Be kind to yourself.

One day at a time.

I have been in the position of not telling anyone about being pregnant as I had lost a baby shortly before who had a congenital illness.

It is normal to try and protect your DH from six weeks of hope/pain/worry, and to some extent I do beleive it is easier to "cope" if no-one around you knows.

However if I could relive my journey I would be encouraging you to safe-guard your own health by writing letters say to DH and one for a close friend too, that explains what your situation is, and that they are not to open until such and such date unless they are exceptionaly worried about you.

It is possible that you may loose the plot a bit given the enormous worry you have, if that happens your loved ones need to be able to get help for you.

Take care of yourself too.

Thank you Rosemary Sorry to hear that you lost your precious baby. I do hope that the pregnancy following, turned out ok.

Yes, it does feel easier to not have to deal with anyone else's worry/stress/disapproval (not just talking about DH here but other family members in general). I feel that the guilt would feel even worse if people knew and I was then responsible for them feeling worried and fearful for weeks.

Although I sort of keep wanting to tell DH. But then I remember how awful it was last time around when we both knew and instead of it feeling supportive, it was as though we were absorbing each other's fear and tension all the time. It's hard not having anyone know but it really does feel that that's actually the more bearable option than telling...

Thanks again :)

Hi there, I've not been quite in your situation but very similar. I have 3 DC - 1st, normal, 2nd, diagnosed with CF following heel prick test, and then we now thankfully have our third, who isn't even a carrier. We always wanted 3DC (actually 4, but won't be risking things another time) and after a huge amount of soul searching we decided to conceive naturally and get the CVS test done at 11 weeks, with a view to termination if the feotus had CF. Like you we had to keep the pregnancy secret to everyone, as many do not share our viewpoint and many would have found our plans very hard to accept, let alone approve. I found those weeks incredibly hard, waiting for the CVS (which then took 3 separate attempts due to position of the placenta), then waiting for the results, and I realise we were incredibly lucky that this time the 3 in 4 chance of no CF played our way. We were not eligible for funding for PGD, as had one "healthy" child already, and we could not afford doing it privately (plus the travelling involved would have been very difficult). I am so grateful that I was spared having to go through what you had to in your last pregnancy, but in many ways I can sympathise.

Personally I would confide in someone, a close friend if not DH. I ended up having to confide in one friend who guessed I was pregnant (and I'm a rubbish liar), and I can honestly say she helped save my sanity in those weeks. I also had a lot of support on this board while waiting for the CVS and the results, which was invaluable.

Having a daughter with CF, who (touch wood) is doing extremely well almost made it even harder- I kept thinking is this disease bad enough to warrant considering termination, and I felt that somehow I was doing her an injustice. It find the fact that gene therapy is really closely on the horizon now muddies the moral waters even further. However, I have read a lot of adults posting online who have CF who are of the viewpoint that parents should not "willingly" give a child this disease- of course you may love a child no matter what, and you cannot predict everything that could happen to any child/adult - but from the suffering that the person entails with CF as they get older they feel this is not worthwhile when there are options such as PGD and early testing via CVS. Even though DD1 is doing well, she does suffer already, every day, and I know this will get worse as she gets older. I still shudder when looking further into the future. I personally would not bring another child willingly into the world with CF if it can be avoided at a comparatively early stage of pregnancy. I can only imagine how hard it was terminating your last pregnancy, but in my book at least you did the right thing. It is such a personal decision, only you know how you feel and how you could cope.

I really hope the 75% chance that your foetus is clear of CF plays your way this time - try to take each day as it comes and do get some support from someone somehow. Wishing you strength and lots of good luck xxxx

Having a daughter with CF, who (touch wood) is doing extremely well almost made it even harder- I kept thinking is this disease bad enough to warrant considering termination, and I felt that somehow I was doing her an injustice. It find the fact that gene therapy is really closely on the horizon now muddies the moral waters even further

Hi Jellyfish, I know exactly what you mean. When we found out that DH was a carrier (I'd known my status for years due to having a relative with CF), I was about 16 weeks pregnant and at that time, I felt that there was no way I could consider terminating for CF as it would have felt like I was saying that my relative's life had no value.

As it turned out, and I wasn't supposed to know she'd said these things - they were reported back to me by my mum and sister after my son had been born - my relative had been appalled that I didn't have an amnio with view to terminating. She said that we (DH and I) had no idea about what we were potentially dealing with and that it was utterly wrong, in her eyes, to bring a child with CF into the world if there was any way of avoiding it. And this is somebody who has a less severe than usual type of CF. She wasn't diagnosed until adulthood and has already lived many years longer than most CF sufferers do. DH and I are carriers for the most common and most severe mutation.

So that made us see the issue very differently and we decided that if there ever was another pregnancy, we'd terminate after CVS if the baby was affected. But like you say, the progress that's being made in terms of treatments does muddy the waters. With my last pregnancy, I kept googling for news on CF treatments to see if there were any imminent looking breakthroughs. I was 99% sure that we would be making the right choice if the tests came back positive but there was still that little bit of doubt about whether in two, three, four years time there'd be treatments available that would revolutionise the prognosis for children with CF :(

But we felt that we couldn't just go ahead and cross our fingers that it would happen soon enough for our child. And as it happened, when I was in hospital waiting to have the termination and was very emotional about what was about to happen, the surgeon who was going to be operating told me that I was doing the right thing and that this was the kinder option by far. Maybe she said that to make me feel better or maybe it was because it looked like I was wavering about going through with it but her words have stayed with me, all the more because I don't think that medical staff are meant to express a personal opinion on something like that.

I hope your darling daughter continues to do well and that the gene therapy breakthrough is just around the corner. And congratulations on beating the odds with your third DC! Totally understand you not wanting to push your luck again.

I really do feel that it is impossible to know the full extent of suffering involved in CF unless you are a sufferer, so the words and opinions of those older than my daughter who have lived and battled with CF did shape my decisions on how to progress with our pregnancy options. I am glad the surgeon was reassuring (though I imagine like you said that strictly they shouldn't make any such statements!) and as I said in my mind you did the right thing last time. There has been quite a lengthy discussion on the CF Trust's parents/carers forum about choices when having another child, which I'm not sure would help you but many adults with CF have been posting their views which support the "don't bring another child into the world with CF" standpoint- though they have naturally argued to use the technology available via PGD.

There have indeed been great leaps forward in gene therapy in recent years, but the reality is that these technologies take a long time to finally reach the affected people and have the desired effect. I am lucky that the mutation my daughter inherited from my husband is one that they have had most success in treating with gene therapy, and I am hopeful that she may be able to have such therapy within the next few years. However I think the same cannot yet be said for the mutation which you carry - though there are some positives recently with initial clinical trial results.

Have you confided in anyone yet about your pregnancy? I can really empathise with how you feel, the wait is unbelievably agonising & soul destroying. With DC3 I had convinced myself she had CF, and had mentally made plans for the termination etc etc. I couldn't think of even being pregnant, I couldn't think of her as a baby (and asked sonographers etc. not to show me the screen, and only refer to her as a foetus). The only way I could cope was to think the worse. That's just me though! I sincerely hope this time the odds come in your favour. If only life was fair!

Thinking of you and wishing you all the very best and hope the time speeds forward as quickly as possible to the results of the CVS.

Have you confided in anyone yet about your pregnancy? I can really empathise with how you feel, the wait is unbelievably agonising & soul destroying. With DC3 I had convinced myself she had CF, and had mentally made plans for the termination etc etc. I couldn't think of even being pregnant, I couldn't think of her as a baby (and asked sonographers etc. not to show me the screen, and only refer to her as a foetus). The only way I could cope was to think the worse. That's just me though! I sincerely hope this time the odds come in your favour. If only life was fair!

Yeah, my husband knows now. My symptoms disappeared a few days ago and when I phoned the community midwife unit, they said that as the pregnancy was still so early on, it was most likely to mean miscarriage. I just couldn't cope with keeping it to myself anymore so I told him. Waiting to have it confirmed in a scan tomorrow.

I did have a blood test to measure hcg at the doctors but when they gave me the results (which didn't confirm miscarriage) they said there was no point having another one to compare levels as blood tests don't tell you much.

Wrt what you said about assuming your baby had CF in case the news was bad, that's exactly what we did last time. I was bracing myself for the bad news long before it came. As you say, it's about the only way of coping with the waiting and the uncertainty.

So sorry to hear that you may have miscarried - how did the scan go? Thinking of you and wishing an easy way through all of this, if only it was that simple. Be gentle on yourself. Really glad that you have confided in your DH - how has he taken the news? Big hugs x

The sonographer said that although she was pretty sure that the embryo stopped developing at around 6 weeks (I should have been 7 weeks, 5 days yesterday), they've got very strict rules on diagnosing early miscarriage so I've got to go back for another scan next tues for confirmation. No sign of any bleeding yet.

I've had a week to get my head around it and of course this doesn't begin to compare with having to terminate after a CVS but it's still hard and DH and I are gutted. He was shocked that I hadn't told him and said he wished I had let him know from the start but he wasn't angry about it. He was hoping it would be good news at the scan yesterday. He said he's happy to try again if I'm sure I can face putting myself (and him) through all of this again.

Right now, we're both struggling with self pity and disbelief at what feels like terrible luck. It's weird how you grow up being told that life isn't fair and you know logically that life isn't fair but you still feel shocked by it when crappy things happen.

I am so sorry you're having to go through all of this. There's nothing worse than being in limbo for even longer :( I guess the one good thing to come out of it all is the knowledge of your DH's support - both now and in any future pregnancy. I completely agree, it is so true that we're taught that life isn't fair but there's nothing worse than having to live through it, especially when it seems "bad luck" piles up over certain parts of our lives (hopefully not all the way through). The threads on this section of the board (and the special needs, premature birth etc. sections) are testament to the utter unfairness of life at times :(

FWIW I know one amazingly strong lady who went through four pregnancies and the CVS route following diagnosis of her firstborn with CF. Three of hers are now nearly grown up. It is hard from where you are right now to envisage ever having another healthy baby to hold, but it can happen, and when you can find the strength to continue on this journey I really hope lady luck is on your side.

Please do let us know how next week's scan goes. Will be holding you in my thoughts, I can well imagine the heartache x

Hi, just to update - I did miscarry over the weekend. Feel surprisingly ok about it now, which is probably because the experience of terminating at 13 weeks after a cvs was so much worse and it helps to put this very early loss into perspective.

Thanks to everyone who's posted. I'm really grateful for all of your sympathy, advice and encouragement :) Jellyfish your friend must have nerves of steel, it's hard to imagine going through that four times, I'm quite in awe of her courage.

Daytonightbarbie - sorry so late in replying, been offline for a while - I'm really sorry to read your news, but in a way like you said in comparison to your previous experience this probably was far less traumatic.

I just wanted to wish you all the very best for the future, whatever you decide to do. I hope in time that you do find the strength to try again, as it does sound like you would at least have the full support of your DH - or that you win the lottery and can go down the PGD/IVF route if that is ever an option. It seems so unfair at times that the thought of starting a new life is always tainted with the anxiety and sadness of anticipated antenatal testing and awful decisions - I have always wished I could be like so many friends and have babies with almost gay abandon! But out of the many things life can throw at us I've come to realise this is far from the worst - time has helped me gain that perspective... Not easy when everything is so fresh in your memory :(

For now, be gentle on yourself and enjoy your little one. Huge hugs xxx