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Topic: another baby advice
Replies: 6   Pages: 1   Last Post: 18-Dec-2006 15:39 by: macmum

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Replies: 6   Pages: 1  
ange

Posts: 4
Registered: 12-Nov-2006
another baby advice
Posted: 17-Dec-2006 09:02
  Reply

Hi, I am desperate for advice from parents whoose first child has cf. My husband and I have just completed 2 failed attempts at pgd and we are devastated. We fund this ourselves and my husband wants us to risk having another baby naturally. However he is against termination and doesn't want to have a cvs and I do. I've thought about it a lot and I can't have another baby with cf. Has anyone had a similiar experience and how did you reach your agonising decision?
Also I fear how another child with cf would impact on our little one who is always full of infections bless her. Has anyone got 2 children with cf and how do you cope? any advice please!

ladybird

Posts: 226
From: Northants
Registered: 05-Nov-2006
Re: another baby advice
Posted: 17-Dec-2006 09:29
  Reply

It's very different for us as we have two older children without CF, but I would love a fourth child. I've had to come to terms with us not having that child though. Hubby would go down the route of cvs, abortion, etc, whereas I wouldn't. I've been through 3 pregnancies and natural births and just couldn't bring myself to abort a child, but don't think it would be fair on the family to have another child with CF knowing what we know now.

This is such a difficult and personal decision, I wish you all the best in making it. Sorry that's of no help at all, but I'd like to wish you luck whatever you decide.

Shadow x

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006
Re: another baby advice
Posted: 17-Dec-2006 12:06
  Reply

I've said this so many times before, that I'm reluctant to say it again, but as our experience does seem to be quite a relevant one in making such a decision, I'll say it again. It hurts more every time I type it though.

I have two children with cf. My daughter is 4 1/2, and has stayed relatively well. She had Haemophilus Influenzae at 13 months, and Pseudomonas at 23 months, and that's it. Neither made her ill. Both were easily cleared, and she hasn't grown a bug in 2 1/2 years. She still struggles, she doesn't like physio, she has to take a lot of tablets, she has to have foul tasting vitamins and prophylactic antibiotics, and she still has problems adjusting mentally to her cf.

My son is 2 years 3 months, and he is the total opposite. He grew his 1st bug at 1 month old and didn't stop growing them for 8 months. He has needed 13 courses of iv's so far, and has had 2 portacath surgeries. He also has severe asthma and gastro-oesophageal reflux, caused by his cf. He also gets hayfever, which worsens his asthma. His asthma has caused him to have frequent courses of steroids.

We CHOSE to have my son, because NAIVELY, we thought that he would be as healthy as my daughter, I mean, he's got the same cf genes, so why not? And of course, we had no idea at the time, how bad cf can get, how quickly. We thought vaguely that by the time they got sick, the cure would be found, and so it wouldn't matter.

If we could go back to when we decided to try for my son, we know for a fact, that we wouldn't try for him. Once he was conceived, he was here to stay, there was no way we could have had a termination or anything, but his life has been very very difficult for him, and for us, and as a result, he's now a year behind himself, developmentally, probably caused by the amount of time he's spent very ill in his short life.

Even though he is my gorgeous little boy and I love him to pieces, having him has had a hugely negative impact on our family, Seren has struggled with coping with me and my son having long hospital stays, and as I've been suffering with depression for 2 1/2 years now, she's also had to go through that with me.

Originally, we planned a big family of 3 or 4 children, but the way things are, we just couldn't cope with any more children at all, we really really struggle to cope with the two we have.

I'm sorry to have such a negative story to tell, but I hope it helps in your decision. I personally wouldn't recommend having 2 with cf.

Becky x

Dawn

Posts: 29
From: Worcestershire
Registered: 06-Nov-2006
Re: another baby advice
Posted: 17-Dec-2006 13:09
  Reply

Hi, I have 2 children with CF Kris 21 and Kayleigh 19. Kris was diagnosed at 3, by this time our daughter was 11 months old! So they tested her and she was CF positive. We knew somehting was wrong with Kris from the moment he was born. Our health visitor said I was starving him as he failed to gain weight, I took him to see a paeditrician for almost 3 years and he said he had toddler diahorria and he would grow out of it! Then he had a rectal prolapse that went on for 4 months! It was a nightmare. Finally he was referred to Birmingham Childrens Hospital to see the stomach and bowel specialist, and he took one look at our son and said ''HE HAS CF, BUT WE WILL NEED TO DO A SWEAT TEST TO CONFIRM IT'' If only they had sent us to Birmingham in the first place.
We have a 3rd child now 16, who is not even a carrier, I had the CVS at 11 weeks, I know it sounds cruel, but I would not of had Daniel if he had been CF positive.
Good luck with what ever you decide

ange

Posts: 4
Registered: 12-Nov-2006
Re: another baby advice
Posted: 17-Dec-2006 17:43
  Reply

Thanks for your time. I think if we had another child with cf our marriage would suffer. Its bad enough with one, the pressure is on all the time, who does medicine, physio, hearing her cough at night and feeling completely useless.
I've lots to think about

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006
Re: another baby advice
Posted: 17-Dec-2006 22:00
  Reply

Yes, it definitely takes it's toll on a marriage. We were VERY close to splitting up back in late September. Dylan had just been very very ill with a portacath infection, and had required surgery to remove the old one and fit a new one, as it broke, and we found it really really hard to get through it.

We're still struggling quite a bit really, just coping day to day, but at least we're not thinking about divorce any more.

Becky x

macmum

Posts: 5
From: ayrshire
Registered: 12-Nov-2006
Re: another baby advice
Posted: 18-Dec-2006 15:39
  Reply

Hi ange! my name is Helen, and i have 2 sons, aged 3yrs 9mths and 8 weeks, my elder son had cf and the youngest without, I too went thru exactly what u did and after long agonising decisions we decided to have another baby naturally, and in saying this we too naively thought we would cope with another cf baby, we did it once why not again? but after much thought we decided to have cvs again not without it's own waiting, what if's, thankfully taylor was born a carrier, grateful we are for him, ian (elder son) is asking questions, why doesnt he needs medi's etc. my advice to u is... think carefully, get informed opinions from the medical staff and be prepared, cvs testing can lead to having to make heartbreaking decisions which ultimately only you and ur partner can decide upon. Sorry if i've not been much help, but plz feel free to e-mail(it's on my profile), if u need someone to chat too, have a good festive season.Helen.x