Not to tell DH about this pregnancy?

[DayToNightBarbie]

Will try to keep this as short as I can. DH and I are both carriers of the gene for cystic fibrosis. This means that any child we conceive without PGD IVF will have a one in four chance of having the condition.

We have a one year old son who's, thankfully, unaffected (we didn't know DH was a carrier before I got pregnant). We would both LOVE to have another child but can't afford PGD. We've discussed possibly trying for another baby naturally and then having the CVS test and terminating if the baby is found to have CF. I'm really sorry if this sounds horribly insensitive to anyone reading this who's affected by CF, by the way :(

When I was pregnant with DS, we didn't find out about DH being a carrier until I was way past the CVS window and in any case, I was absolutely adamant that I wouldn't even consider terminating for that reason. Since then, we've both changed our minds about whether we feel we could knowingly bring a child into the world who was suffering from CF.

My cousin has CF and she was horrified that I didn't have an amniocentesis - she thought I should have done and should have terminated if my DS was found to have CF, even though it would have been done at around 20 weeks into my pregnancy. That's how strongly she feels that CF is not a condition she'd wish on another living soul. This has made me and DH think about things a lot (part of the reason I didn't feel I could terminate for CF, even at a much earlier stage, was the thought that my cousin may never have been born if these tests were an option back in the day).

Anyway, as I said, we decided to talk about maybe trying for another baby in about a year's time. IF, and only if, we both felt sure we could cope with the possibility of terminating at around 12-13 weeks. DH has said that although he'd definitely not want to continue with a CF pregnancy, he isn't at all sure he'd be able to deal with a termination.

Well, I've just found out that I'm pregnant again. I can't help feeling thrilled about it, even though I shouldn't be. I can't help feeling excited and optimistic and hopeful but I'm pretty sure that DH won't feel the same way. For this reason, I'm seriously considering not telling him until the CVS confirms that the baby doesn't have CF. And not telling him at all if it does. I don't want to ruin the next two months for him and I don't want him to have the heartache of knowing about the termination if he doesn't have to.

Also, and this is me being selfish, I don't know if I can cope with his reaction as well as coping with the uncertainty of all of this myself :(

Am I being totally unreasonable?

you have no option other than to tell him really, i think you know that, but you are dreading his reaction.

Exactly.

OP, I'm in a similar boat to you. DH and I carry a recessive gene which means that we have a 1:4 chance of any baby having a kidney condition which is incompatible with life. We found this out through losing our first DS at 22 weeks. I had a termination for medical reasons when we found that his kidneys had not developed properly and he had no chance of survival outside the womb.

We went on to have another baby who is thankfully healthy and nearly a year old now. Making the decision to try again was very hard and the first 17 weeks of DS2's pregnancy were some of the worst times of our lives. We have now decided not to have any more children as neither of us can face going through it all again BUT if our contraceptive failed and I was pregnant again then I think all bets are off and we'd need to re-assess how we both feel about it.

What I'm trying to say is, you need to consider that your DH's feelings are based on a 'what if' scenario. Now that that scenario is a reality, he may well feel differently. He might not, but I think you need to tell him so that he can support you and be included in the decisions that will lie ahead for you both.

Take care of yourself and best of luck with everything.

How will your DH feel when he eventually finds out?
That, it seems to me, is key.
If he's likely to see why you did it, and even be grateful he was spared some of the worry, then go with it if it's also best for you
If he's likely to be angry, tell him within the month (you can always claim you didn't know for an extra week or so)

mintyneb sorry to hear your DD has CF but really glad to hear she's doing well :) It must have been a hell of a shock for you when you got the diagnosis if it was unexpected. No, I'm not close to my cousin and tbh she's not all that interested in family. She just had very strong views on my pregnancy (and quite the opposite to what any of us assumed they'd be).

I think you have to tell him. You need to go through this and make decisions as a family. Also, both of you have changed your minds about whether or not you would abort before. It's possible that one or both of you could have a rethink when faced with the prospect of a real rather than a hypothetical baby. So to say you know he would be happy about you aborting if the baby does have CF might not be right.

Please talk to him and good luck with the pregnancy.

I don't think you should be bargaining on being able to conceal a pregnancy for that long, anyway, in addition to all the issues already pointed out by other posters.

I think you both need to know and you'll need him there.
Btw, have you thought about a cvs? You can have that earlier than an amnio.

If it does all go wrong and you do decide to terminate, you will probably need his support anyway. And people don't really know what their own reactions are going to be so don't try second guessing what he'll do. He's a dad this time round and may be more mature in his responses to you.

Give him the chance to help you. If it goes badly you may resent needing to not tell him and then resent him for needing you to not tell him iykwim.

Bloody hell Oli :( So sorry to hear about your poor DS1, I can't imagine how horrific that must have been for you. It must have taken so much courage to try again.

What a difficult situation for you, I'm so sorry, but also congratulations on your pregnancy.

Maybe the hardest thing about the thought of telling your DH is just saying the words and it all becoming real and reminding you so much of your past experience? I think that's what I'd struggle with. But I think maybe this is too big a thing to keep to yourself. Would there be any way you could tell him about the pregnancy and also ask him to support you and try to talk to him about how it was for you last time? It may be that he feels he didn't make a great job of things last time and would like to do it better now?

I think you're in such a difficult situation and I can see why you want to keep it to yourself, but maybe it would come out eventually and that might be worse.

Good luck whatever you decide to do.

I think you tell him. You need to be in this together. He's your husband, he will be furious if he's not able to be involved at probably one of the most important things in both your lives.

My sympathies as I have seen how much CF consumes a family. And they are so so so so close to a cure for this horrendous disease.

Sorry for not replying to all the individual posts, am typing on my phone and also trying to stop DS from climbing on the tv, so it's a bit tricky to keep up. Thanks so much to everybody who's posted, I honestly am so grateful for your advice and also to be able to talk about this somewhere as I haven't told a soul in real life (only known for a couple of hours).

It sounds a little bit that you are keeping this from your DH, because when you tell him it will all become "real" and you will be going through the whole scary process again. Until he knows, you can keep yourself in denial a bit. Is that right?

I can't really imagine what you are going through, but I agree that whatever happens, you need the support of your DH. And more than that, you need to give him the opportunity to support you. Keeping it secret would be such a betrayal of him.

It sounds like such a scary time ahead for you. :( I will be keeping everything crossed for you.

Thank you - DTNB. It was hard but worth it in the end. My DH was much stronger than I thought he would be. We were both terrified but when it came to it he was the positive one and kept me going through a lot of nights when I nearly lost the plot. I really hope it's good news for you both

Also, both of you have changed your minds about whether or not you would abort before. It's possible that one or both of you could have a rethink when faced with the prospect of a real rather than a hypothetical baby.

There is this, yes

Btw, have you thought about a cvs? You can have that earlier than an amnio.

Yes, I'll be having the CVS - the amnio was offered in my first pregnancy as we didn't know about the CF risk at the time when the CVS would have been an option.

OP I have been where your DH is. While DS was on the way we found that I carry the Tay-Sachs gene where the genetics are like CF: except that babies born with Tay-Sachs die very young and have no quality of life first.

There followed a desperate week while DW was tested; negative, and we went on to have a healthy and now adult DS ? who is himself not a carrier.

For unconnected reasons we never had another. But if DW had been positive for Tay-Sachs and had fallen pregnant again I would have wanted to know and been deeply upset if she had not told me at once. It would have been something for us to live through and work through together.

So please, OP, tell him. He has a need to know. Tell him today. Very best of luck to you.

Good post, Andrewofgg.

daytonight, yes it was a hell of a shock finding out about DDs condition. She had to have two lots of surgery on her bowel (due to problems related to the CF) and didn't leave hospital til she was nearly 2 months old. However, we have always said that at least I had a normal healthy pregnancy and could 'enjoy' every moment of it with only the usual worries of any expectant mum.

If we had known beforehand we were carriers, there is a very strong chance that we wouldn't have had her :( . As it is she will be an only child as DH says he couldn't go through the whole pregnancy, risk, fear again.

As someone else has said, you may find that it will be hard to keep your pregnancy quiet. I've heard that second time round you are more tired and could start to show earlier. What if you suffer from morning sickness? What about letters arriving in the post marked with the name of your local hospital, wouldn't they arouse your DH suspicions?

Maybe just allow yourself some time (but not too much!) to take in the news and then bring up the subject. You really must

DTNB - I'm sorry you are going through this at what should be a really happy time. I really admire you for wanting to spare him this and I understand your desire not to have to tell him until you know.

However, I think that you know you are going to have to tell him. It would destroy your relationship with him, if you didn't tell him, even if he never found out because you would know and that has a way of quietly eroding a relationship.

Also, for your own sake - you shouldn't have to go through this on your own.

I will keep my fingers crossed that you don't have to make the terrible decision over whether to terminate your pregnancy or not x

Oh love please tell him, you need him. Also he should be given a say about an actual pregnancy not a thoratical one. IYSWIM.

Obviously you need to tell him but you already acknowledge that.

I can understand that as he didn't cope at all well before, you probably feel that far from being there to support you with your feelings, telling him will actually add another burden. Him falling apart is the last thing you need at the moment.

I don't know when you can heve the test, but how many weeks would you need to get through from now until then? Is there someone else you can confide in to provide you with emotional support?

He needs to know, but I would probably not tell him until it's closer to the test. Take a few weeks to try and get your head around it.

hugs

You need to tell him. I totally understand you wanting to spare him the heartache and worry but the baby is as much his as yours. You need to make the decisions together.

I think you're being selfish trying to take the option out of his hands by denying him the right to know about the pregnancy and potential CF, until after the CVS.

It is something you both need to make a decision about, you made a mutual agreement, but what if you feel differently about the pregnancy by the time the CVS is due (11 weeks if I remember correctly). Would you still feel like aborting at 12 weeks when the results are back?

Also it is something both of you need to face up to and deal with responsibly. I can't help feeling that both of you were incredibly stupid to even get into this position knowing that you are both carriers of the CF gene.

Yes, I am being harsh, but like mintyneb, I have a child with CF, and whilst treatments have improved you cannot guarantee how your child will be affected. There are different severities of this condition. I have a DS who is ill (again) and who has battled with health problems for the last eight years, and I will be laden with guilt for the rest of my life because of what he has had to endure (and we didn't know about our CF genes). Coincided with that, we lost a young friend of DS's this year to CF, she was just 11. In my brutually honest opinion it's something you should never have juggled with.

Just tell him, but be clear, you already have a child and you will not stand for his reckless behaviour this time. He needs to man up and you need to get through this together.

Finally I really hope for a healthy, happy pregnancy for you. Despite my post I wouldn't wish CF on anyone and I really hope your CVS is all clear.