Wednesday, May 2, 2012


So, this is more serious than usual. As some of you know I have Cystic Fibrosis which means that the lungs, pancreas and digestive system don't like to work properly. It basically affects all the major organs in the body but we'll stick with the most obvious for now. For example my current lung function stands at about 35% which on a good day is a pain in the arse. CF is one of the Uk's most common life threatening inherited illnesses.

Now I was born in the early 70s when a cure was around the corner. Haaaaaaa. Haaaa. Thirty eight years later the cure is still stuck somewhere. Sorry for the flippancy but this has always amused me. It must be a massive corner. Etc.

Now for a bit of background information.  Most people do not know that they carry the cf gene and only find out when their child is diagnosed with Cystic Fibrosis. One in twenty five of the population carry the faulty gene that cause CF. If two people get together who happen to have the faulty gene then there is a one in four chance that the child with have CF.

When I was born and it was discovered that I had CF my parents were advised not to have any more children due to the risk of having another child with CF. For the most part I think they were advised correctly.  There weren't the options that there are now. For example now there is PGD (pre-implantation genetic screening).

Now then, I have something to say so please bear with me. Yesterday I was directed  to a posting on a Cystic Fibrosis forum. It was from a mother whose first child is healthy and their second child has Cystic Fibrosis. This person was asking for opinions on whether she should risk having a third child knowing that the next child could also have CF. Here is what the person in question said:

 Obviously we know that there will be a chance that the next child would also have cf. If we did go ahead with another pregnancy I wouldn't try to find out if the child had cf I would just wait until its born. But I wonder if its selfish to go ahead with a 3rd pregnancy. The child would be very much loved and I do not feel like it would be an issue if the child did have cf, except for the obvious cross infection. Any views would be appreciated. 

This is where I get a bit uppity with what this person has said. It isn't directed solely at this person because I've read many similar things. Before we start I'm aware that people are allowed to make their choices etc. However when someone says 'I do not feel like it would be an issue if the child had CF' and 'The child would be very much loved' then I start to question their reasoning. It's all very well stating that it wouldn't be a problem for the them as parents. Well done. What about the person purposely being born with the risk of it having CF? What about how it will be for the child? As an adult? My own CF couldn't be helped and that is something that just happened. Like I mentioned previously there are now options available like embryo screening and I personally feel to go ahead and risk having a second child with CF regardless of any possible screening is selfish. Saying things like 'I can cope with a another child with CF' make me want to be sick into my mouth. I hear that phrase time and time again. It's wrong and it is selfish and I'm sorry if that offends anyone.

I really think that if I had parents who had ignored a serious issue in order to take a chance to have a child no matter what the consequence and blatantly shunned the chance of new methods such as PGD  I think I'd be a bit cheesed off at some point.

Don't get me wrong, I have a brilliant life but over the past few years my health has become more and more difficult to deal with. My worst fear is leaving my husband and son behind. My husband's worse fear is that I won't be able to cook for him if I'm dead. My son's worst fear is that I won't be able to wash his socks if I'm dead. The dog's worst fear is that I won't walk her if I'm dead. I jest of course but a serious health condition isn't something you can put on someone just because you will still 'love that child no matter what' and because 'you can cope'.  I just don't think that attitude is right.


Have a photo of my dog.


  1. Just wanted to say I agree with you and have similar thoughts when I read such posts!

  2. It has also been on my mind an awful lot too.

    Do I wish I'd never been born? No.

    Do I wish my parents had the likes of pgd available to them in 1969? Yes.

    Contradiction? No. I wouldn't have made it. Along with the other millions of little swimmers.

    The fact is that if you 'risk' it and that baby has cf. You have risked having that child who will be exposed to a life full of hospital visits, painful proceedured and a shorter than ideal life.

    Audrey x

  3. 1) Agreed: Cheesed off.
    2) I find that when I wonder, "Am I being selfish?" I already know I'm being selfish.
    3) Said dog is gazing yearningly and soulfully into the camera as if the camera were a slice of roast beef...

  4. Agree. I have cf and would love a child but can't (rubbish lf) If someone said I could have a child but there would be a risk he or she would have cf then no way would I go for it. When I was young I had no real awareness that I was sick. Now I'm an adult and have had some very scary experiences I have been truly terrified- would I want to inflict that on a child?? I don't think many parents have had much experience of end stage cf.
    I'm not saying I don't love my life, I do, but I wouldn't have chosen it for my child.


  5. Audrey: I'm late replying but the fall out from this has been more than interesting!! Today I'm calm and floating in an ocean of tranquility. Or some such shit!


  6. Helen,

    I'm glad it's not just me. I've already offended half the population I think. usually I offend the dog, so it makes a nice change.... :0)


  7. Sparkle: Oh I'm so excited to 'see' you here. it's been too long. I'm a bit rubbish. By a bit rubbish, I mean a LOT rubbish. How is Lily? X

  8. Little Harriet,

    Thanks for commenting. It's a difficult decision to make. I've just been enjoying reading your blog. Can I link it on here? Thought I should check first.

    Best wishes.


  9. Totally agree. I hate the fact that the "cure is around the corner" argument is trotted out every time someone posts this question on the forum.