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Cvs wwyd? Struggling

(7 Posts)
BobbinsBoo1 Sat 21-Jan-17 17:53:26

Not sure why I'm writing this really, feeling a bit all over the place so I suppose I'm looking for other people's input right now because I'm not ready to talk about it with others in real life (other than my dh and best friend so far)

I have a ds who is 8 with cystic fibrosis. We are pregnant again (planned) unsure about whether to have prenatal genetic testing and then a termination for medical reasons if this baby has cf or continue without testing and hope for the best. On a practical and emotional level my dh and I can cope with another child with medical needs however, because the disease is so unpredictable we won't know how the baby will be effected and what quality of life it will have. There are also risks with cross infection and our older child passing bacteria to the baby and vise versa and them both ending up ill.

I'm only 5 weeks pregnant but I love the baby already and keep getting excited when I think about he/she joining our family in 8 months time. But I'm not sure if it's incredibly selfish of us to bring a baby into the world knowing it will suffer and may not have a good quality of life and may impact negatively on my ds (and my ds impact negatively on the baby).

This decision seemed so much easier when we were ttc and the baby was hypothetical. Now I'm pregnant I'm struggling so much with what is the best thing to do and what is best for our family.

Has anyone been in a similar situation before? For example got pregnant knowing there's a 1 in 4 chance the baby won't be healthy and then had to make these decisions?

BobbinsBoo1 Sun 22-Jan-17 19:12:41

Anyone? sad

FizzyFeet Sun 22-Jan-17 19:19:14

I'm so sorry you are in this situation, OP - I'm mostly replying to bump this for you in the hope that others with more experience might see it. Had you and your DH settled on a course of action re testing before you conceived? Pregnancy hormones are powerful things and I'm wondering if you are now questioning something you had already decided.

MrsBobDylan Mon 23-Jan-17 09:58:13

I haven't got experience with cf but my second child has autism and when I came to ttc no.3 Dh and I spent a long time thinking about whether we could cope with another child who had autism. The odds were 1 in 10. It was complicated by the fact that ds1 has type 1 diabetes and we worried about the affect another sibling would have on him and if it was fair.

I think you are in a very difficult situation but you are ready for another child, regardless of what that may bring and your unborn baby will add so much to all your lives. The decision to do genetic testing is hard - you could do it, then make a decision based on the results. You don't need to make all the decisions at once iyswim.

We decided to go ahead and are so pleased we did.ds3 is nt but my dh's main reason for a third is that our lives are already totally adapted for a child with a disability so if we had another, it wouldn't be such a radical adjustment as it was first time round. And the same is true for you.

Good luck with whatever you decide and huge congratulations on your pregnancy.

BobbinsBoo1 Wed 25-Jan-17 13:27:13

Thank you both for your replies.

Fizzyfeet, I think that's the problem, before getting pregnant we had decided to have testing and then a termination for medical reasons if the baby had cf. We were very sure in that decision but now I'm actually pregnant that feeling of being so sure has gone. I'm finding it so hard to be questioning a decision I was so sure of.

Mrsbobdylan it's lovely to hear you went for number 3 and all turned out well. I keep going around and around in my head about having another with cf and trying to picture what our life will look like. Like you say we are already set up for another one with cf on a practical level (for example we already know our cf care team and all the practical sides of cf) but I can't imagine how hard it will be if the children end up both ill and how I'll cope emotionally knowing I chose that iyswim.

I know that only we can make these decisions but it really does help to have other people's views. Thanks again

StillinMyPJs Tue 31-Jan-17 21:13:41

Hi Bobbins. I've been in a similar situation. My oldest has an extremely rare metabolic condition. He has development delays, intellectual disability, reduced mobility and a white blood cell issue that means that a simple virus can land us in hospital for a week.

When we tried for no2 we had been told that there was a 1 in 4 chance of it happening again. As the exact gene was unknown prenatal testing was unavailable and anyway, my choice would have been to continue the pregnancy regardless. Most medical staff were surprised at how I felt about this and some made me feel like I should want testing and tfmr.

As it happened I got pregnant with fraternal twins and both of them had the same condition, so a one in four chance THREE times. They were diagnosed at 7 and 14 days old. I was devestated. The first year was tough but we knew what we were doing so I cut out the two years of googling that I did with my oldest and just got on with it. We already knew the best specialists and had a team ready to go.

My oldest is now 8 and the twins are 4. The gene mutation was discovered 2 years ago and both myself and husband have a mutation in that gene, so it is a 1 in 4 chance. I still can't believe how unlucky our kids have been.

That said they are all affected differently. I would say that my oldest is the most severely affected. The twin that I thought that would be more severely affected than his brother due to how he presented in the first 12 months is actually the least affected! He still has the mobility issues and even had cataracts removed at 8 months old, but intellectually he is there with his peers and doing so well.

I won't lie. It has been tough on our mental health and marriage. Very occasionally I regret in my head that I had the twins, but I never regret in my heart.

I wish you all the best for the future and any decision making.

Alina2307 Wed 05-Apr-17 10:41:44

Hi. This is a late replay but being in a similar spot I was wondering what you are doing. Have you had the tests or just wait to see after giving birth?
I had a tfmr 2 years ago because of CF. It turned out to be a very aggressive form. Then, last year, had a 9 weeks m/c.
I am now 10 weeks pregnant again and terrified about what could happen after the CVS.
I'm not sure if I could cope again with termination sad

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