CF advise sought

[Floopy21]

Hi, I was wondering if someone could give me some advice? I know I'm a carrier of Cystic Fibrosis (been tested), we have a history of it in my family (my Dad's sister died from it when she was little). The plan was always for my partner to get tested before we started TTC, but he has since changed his mind. He says 'what will be will be' (his answer for most things!) - Although I do understand his view to a certain extent, if we did have a child who was disabled in anyway, we would love & care for then unconditionally & give them the happiest life we could, even if it was short-lived .

Please could someone with experience give me their opnions? - is this 'nature take it's course' attitude a little irresponsible?

[hannahsaunt]

It is the commonest genetic disorder; that said the chances are slim. Should your partner be a carrier it would then be a 1 in 4 chance of your baby having CF. For detailed info about life with CF these days you should go to the CF Trust website which is very comprehensive and very useful. It can be diagnosed with the Guthrie test at birth so the failure to thrive issues are much diminished from when your dad's sister would have been small - it used to be that it wasn't diagnosed until between 2 and 5 years so much damage was done in the interim; that doesn't happen now with such early diagnosis. The medications are excellent and the support services (in the experience of my family) are superb. My nieces lead normal active lives not always without hiccups but they have not been insurmountable hiccups. This is not to diminish the severity of the diagnosis and the daily disruption to normal life BUT I know of children in schools whose peers don't know that they are 'ill' or 'disabled' because it is so well managed. Life expectancy is much greater these days and is improving rapidly. HTH

[Floopy21]

Thank you Hannahsaunt. In the light of what you have told me about your nieces, I don't think I have the right to refuse any of my children life. Thanks again.

[Floopy21]

Thanks FF. I don't think either of us have really thought it through, not 100%, which is why I wanted to get some perspective from those who do have experiance of caring for an ill child. I guess I just want to make sure we're doing the right thing for a child, either way (IYKWIM).

[monstermansmum]

Hi Floopy

Dh and his x had 4 dc's, 2 dc with cf-they died at 6.9yrs and 13yrs.('03 & '05.) They had endless rounds of hospital appts and home care etc but having known them pretty much all their lives I can honestly say they lead normal, active lives. They went swimming, horseriding etc, infact ds2 was surfing, fell in and swallowed sea water that sparked the infection that unfortunately caused his organs to fail. They didnt see themselves as being irresponsible having further children after their first dc with cf was dx'd, but I'm afraid I have different views personally.

Their eldest dc is now 18 and says he doesnt care if his children have cf, which if I'm honest I find a little irresponsible, although I understand his view that his sibs had 'normal'lives and their cf wasnt a factor. I suppose it may be different if it ever happens to him, god forbid.

Knowingly Putting yourself in a position before you conceive of having a potentially terminally ill child, as a pose to a potentially disabled child who is not life limited, is a choice that I feel is not to be taken lightly.

Whilst my husband coped with their illness at the time, his marriage consequently failed at the time of his dds death (2003) and it has certainly left its mark emotionally on him, and as a consequence our relationship is perhaps not what it should be, which in turn has consequences for our children. (I will be pushing to have them tested to see if they are carriers as soon as they are old enough-they wont do it as babies (2 & 3).

Lots to think about-best wishes with your decision.

[Nat1H]

There is no way I would contemplate having a child who could have severe problems.

My DS2 has cerebral palsy, and it is bloody hard work. I have had to give up work to care for him - he has endless appointments at the hospital. He never ever manages a full week in school without at least one appointment (he is just 6 by the way). As he gets older, he develops more problems, and then there are more specialists who become involved and want to see him - more appointments! Having a disabled child is extremely stressful and at times, heartbreaking. Don't get me wrong, I wouldn't be without him, but there is no way I am ever having another baby. I could not cope with another disabled child. And if I could wish for one thing, then it would be that DS2 was not disabled and that we could live our lives like a 'normal' family.

I would think very carefully before making your decision - having a disabled child would change your life beyond recognition.

[monstermansmum]

Most families affected by CF dont see it as a disability iykwim, even though they know it is-life expectancy has improved, there are adults with cf who have gone on to have their own children, and the kids all lead active lives within their own limitations.

I have a ds with SLD, epilepsy, sleep disorder, non verbal etc etc, and having a physically disabled child is hard work-pysically and emotionally.

For me, I worry every morning that ds may have had a big seizure in the night etc and I often dont want to go in his room in the morning. But its a big IF???? For parents of children with terminal illnesses that big IF???? becomes a HUGE WHEN?????? I dont think I would find that easy to live with out of choice.

That said, if I conceived a baby unintentionally iykwim, and the baby had a chance of being disabled or ill, I would feel that I owed it to the child to have as good a shot at life as possible-they shouldnt pay for my irresponsibility. Just my personal views, no offence to anyone intended.

(out of interest,The stats say 1:4-my dh & x had 2:4 )

[Floopy21]

Thank you so much everyone for your help, and for sharing your experiances. I really appreciate it.

[bubble2bubble]

Most parents of child with CF these days had absolutely no idea that they were carriers until their baby was diagnosed. Aside from the pain and heartbreak of finding out that your child has a life threatening condition, many parents also feel terrible guilt that they have did not have the information to prevent them passing on CF to their child.

And yes, things are getting better, and life expectanacy is better, and gene therapy may be realistic in another 10 years or so. DD2 is seen as a very 'well' CF child. However she still has nebulised drugs everyday, antibiotics 4 times daily, physiotherapy 2-3 times daily,medication for her digestion before every meal or snack - and that's just when she's well - it's a lot for a toddler to put up with.

Whatever you decide to do, pleasetry to get as much information as possible, both about CF and about your options

[Phoenix4725]

My dd has a combination of illness all medical that i know the chances of having a normal life span are very low.She is classed a slife limited and truth theres days where that tears my heart out .A and yes i second the guilt feelins took me long time to cme to terms with that my dd hadnot 1 but 3 serious medical issues mind not that i regret having her shes a fighter and has already outstripped drs predections

I already had ds before found out and luckily he does not have them though has whol host of seperat issues.But in wa I am lucky I knew did not want anymore and its dd illness i would worry abut not ds problems so do not envy you but look at every option

[ellymae]

floopy, I really do feel for you as you are in an awkward position. As bubble says most parents of CF children are totally unaware that they are carriers until their DC is diagnosed. You, however, know that you are a carrier and so don't have the benefit of going ahead and having children in blissful ignorance,

I have a 2yr old DD with CF who had to have major surgery at 3 days old due a blocked bowel (a side effect of having Cf affecting about 1/10 babies born with the condition I think) and so that was our brutal introduction to the fact that she had CF.

FWIW I never think of her as 'disabled' (apart from when I am filling out the DLA forms) and provided we can keep her healthy, there should be no reason why she can't play in the first XI hockey team at school or go on to uni or get married etc. That can be a double edged sword in many ways though as to the outside world she looks well and yet inside is a different picture. Even as I'm writing I am worried that a cough she has had for a week may not be hayfever related as we first thought and could be something else. She is having to do cough swabs in the morning and go on extra antibiotics for the next month just in case.

If you were to speak to adults with CF you would get a number of different views about life with the condition. Some would say (obviously hypothetically of course) that if they were to be born again and had to have CF they would do so wholeheartedly as CF has made them the people they are. Others would say that for parents to knowingly put themselves at risk of having a child is the the most selfish thing ever and that those who were first born would never forgive their parents for going on and having more children.

don't know if I'm helping much? I guess my personal view is that as you know you are a carrier I really feel that your DH should get tested as it would be wrong to blindly go ahead. I would not change my DD for the world as I know with a different set of genes she would be someone else but I have lost count of the amount of tears I have shed on a day to day basis just dealing with the treatment and thinking of her future. think very carefully before you go ahead thats all

[ilovepeppapig]

hello

My darling daughter has CF. We did n't know that we were carriers. She is 7 now and was only diagnosed 2 years ago.

She is a fighter. She has nearly died twice (at 10m and 5years old). To look at her you would not know anything was wrong and lots of my friends forget she has CF. She leads an active life although she tires easily and often falls asleep in the car. However when she is ill in the winter i can't stop worrying about her. today she has a cold so i wont sleep much tonight as i need to keep checking her.

I manage to work full time as a teacher. I do have to have lots and lots of time off for appointments, hospital stays etc.

My time at home is however completely exhausting with endless rounds of medication, nebulisers, physio just to keep DD alive.

I also have a DS who is a bit older. When DD is in hospital he is in a complete state as he is worried that she will die. I think that having a sister with a life shortening condition has had a profound effect on my DS.

I do worry about how long i will have my darling little girl for but as someone said, the average life expectancy is now in their 30's.

I think it is a very tough decision to make. I mostly feel that this is my life and i have to get on with it.