Our beautiful baby daughter has cystic fibrosis
Discussion
Directed here by a mate, thanks Steve...
My 4 year old daughter has double D508 CF also and those first months were very, very difficult. All the certainties other parents take for granted are taken away from you.
My wife found it especially difficult when friends with babies would complain about colic etc. She just wanted to shout at them "MY BABY IS FAR WORSE OFF THAN YOURS, STOP COMPLAINING!" but you come to realise that everyone has their own cross to bear and every parent will worry about their kids, it's just that we had a few more things early on so the smaller stuff doesn't phase us any more.
Emily is very strong mentally and as said above, socially way ahead of her peers (she started school this year so we're seeing her with a large group of other kids for the first time) - a lot of the CF consultants will say that CF kids are far more determined and robust.
We've had some rough times with her, age 2-3 was bad, with a lot of infections and many weeks in hospital for IVs, but last year she had a portacath fitted which meant a lot of time in hospital could be replaced with home IVs, and for the last 18 months she's been fit as a fiddle, with only one set of IVs which were more of a precaution than a necessity.
She does ballet, soft play (a cough and snot nightmare but she loves it and it's good exercise), swimming and loves her trampoline which all serve to keep her lungs clear and free from infection and as a result, I've started going to the gym in order to keep up with her which has been a bonus for me too.
If your daughter does need ongoing care, it's very different to what you might have experienced in the past - you'll get to know your CF team really well and they become 'friends' as well as clinicians and are your best advocate if you need any other hospital services.
There are a lot of very frightening and horrible aspects to CF, but there are also some positives and life is not as grim as it once was for the majority of patients. Also, remember that people on the internet are prone to exaggeration and those with CF who are healthy probably won't be posting much (too busy making the most of their health) so take a lot of what you read with a pinch of salt (pun intended).
I'm happy to speak offline or on email if you want to get in touch with me, as a dad you often feel a bit left out as the hospital staff sometimes address mum rather than both of you, then you go back to work and again are not always involved in day-to-day decisions.
EDIT: My wife has just come in so I showed her this thread. She wants to say:
Allow yourselves time to grieve for the loss of certainty, and the potential loss of 'normality' whatever that means. When we were told we felt a huge responsibility to cope and be strong for one another, but at the same time we were the source of the other's strength. When you're trying to be strong for your partner you can't do your own grieving.
Do it together, and understand it won't go on forever (there's a little person that needs you) but that it's a necessary part of the process and not to be ashamed to get help from friends, relatives etc. while you do so.
As a result of the above, I've seem my wife become an incredibly strong (but not hard) woman, someone I'd never have thought she would be who has compassion and empathy but will fight tooth and nail to get the best for our daughter - Emily and I would be lost without her.
She also extends the invitation to contact us through my profile to your wife if she needs another CF mum to speak to. She's very grounded and a good listener.
My 4 year old daughter has double D508 CF also and those first months were very, very difficult. All the certainties other parents take for granted are taken away from you.
My wife found it especially difficult when friends with babies would complain about colic etc. She just wanted to shout at them "MY BABY IS FAR WORSE OFF THAN YOURS, STOP COMPLAINING!" but you come to realise that everyone has their own cross to bear and every parent will worry about their kids, it's just that we had a few more things early on so the smaller stuff doesn't phase us any more.
Emily is very strong mentally and as said above, socially way ahead of her peers (she started school this year so we're seeing her with a large group of other kids for the first time) - a lot of the CF consultants will say that CF kids are far more determined and robust.
We've had some rough times with her, age 2-3 was bad, with a lot of infections and many weeks in hospital for IVs, but last year she had a portacath fitted which meant a lot of time in hospital could be replaced with home IVs, and for the last 18 months she's been fit as a fiddle, with only one set of IVs which were more of a precaution than a necessity.
She does ballet, soft play (a cough and snot nightmare but she loves it and it's good exercise), swimming and loves her trampoline which all serve to keep her lungs clear and free from infection and as a result, I've started going to the gym in order to keep up with her which has been a bonus for me too.
If your daughter does need ongoing care, it's very different to what you might have experienced in the past - you'll get to know your CF team really well and they become 'friends' as well as clinicians and are your best advocate if you need any other hospital services.
There are a lot of very frightening and horrible aspects to CF, but there are also some positives and life is not as grim as it once was for the majority of patients. Also, remember that people on the internet are prone to exaggeration and those with CF who are healthy probably won't be posting much (too busy making the most of their health) so take a lot of what you read with a pinch of salt (pun intended).
I'm happy to speak offline or on email if you want to get in touch with me, as a dad you often feel a bit left out as the hospital staff sometimes address mum rather than both of you, then you go back to work and again are not always involved in day-to-day decisions.
EDIT: My wife has just come in so I showed her this thread. She wants to say:
Allow yourselves time to grieve for the loss of certainty, and the potential loss of 'normality' whatever that means. When we were told we felt a huge responsibility to cope and be strong for one another, but at the same time we were the source of the other's strength. When you're trying to be strong for your partner you can't do your own grieving.
Do it together, and understand it won't go on forever (there's a little person that needs you) but that it's a necessary part of the process and not to be ashamed to get help from friends, relatives etc. while you do so.
As a result of the above, I've seem my wife become an incredibly strong (but not hard) woman, someone I'd never have thought she would be who has compassion and empathy but will fight tooth and nail to get the best for our daughter - Emily and I would be lost without her.
She also extends the invitation to contact us through my profile to your wife if she needs another CF mum to speak to. She's very grounded and a good listener.
Edited by Mark Benson on Tuesday 24th November 10:36
Thank you all so much for the kind replies 
and thank you for the offers of offline support, it really means a lot to know that effectively strangers are so willing to help.
If you sift out all the s
t on pistonheads it does expose that there are some very very decent people out there
Day by day things are improving, I think once all diagnosis are in then there may be another down, but there may be an up so I'm not trying to think too much about that. I know normality will ensue.
The strangest most un expected emotion I have experienced was the other night, I was sat on the sofa and my wife was sat eating her dinner at the table. For the first time in the ten years we have been together I felt sorry for her when I looked over. Sorry that a "normal" baby life she so desperately wanted just might not happen, sorry that she's got to go through all this. She is a strong woman with a good job, she's never had my pity before. For feeling like that I felt sad and maybe angry, if she knew I felt like that she would be so upset.
It's given me a greater respect for her, she's gone through the pregnancy and worried so much about a lot of things, then for this to happen.
I need to toughen up as well, I need to go back to work properly, I've lost my drive which is dangerous as I have my own company and have to generate every penny from the ground up. This morning I was physically sick, although I think that's because I ate about 6 tacos last night because I barely ate yesterday. Although the stress won't help. Luckily for now I have lots of work and other people who can do it so that's a relief.
We are back up there tomorrow. I'll keep you all updated
and thank you for the offers of offline support, it really means a lot to know that effectively strangers are so willing to help. If you sift out all the s
t on pistonheads it does expose that there are some very very decent people out there Day by day things are improving, I think once all diagnosis are in then there may be another down, but there may be an up so I'm not trying to think too much about that. I know normality will ensue.
The strangest most un expected emotion I have experienced was the other night, I was sat on the sofa and my wife was sat eating her dinner at the table. For the first time in the ten years we have been together I felt sorry for her when I looked over. Sorry that a "normal" baby life she so desperately wanted just might not happen, sorry that she's got to go through all this. She is a strong woman with a good job, she's never had my pity before. For feeling like that I felt sad and maybe angry, if she knew I felt like that she would be so upset.
It's given me a greater respect for her, she's gone through the pregnancy and worried so much about a lot of things, then for this to happen.
I need to toughen up as well, I need to go back to work properly, I've lost my drive which is dangerous as I have my own company and have to generate every penny from the ground up. This morning I was physically sick, although I think that's because I ate about 6 tacos last night because I barely ate yesterday. Although the stress won't help. Luckily for now I have lots of work and other people who can do it so that's a relief.
We are back up there tomorrow. I'll keep you all updated
My 2nd daughter, seven next month, has cerebral palsy. I will put a link up to my original thread at the time.
To be told that our daughter had a catastrophic brain injury during child birth was very difficult and I don't think I am over it even now.
But at seven years old I don't think there is anything she can't do, she just does it differently. Yes, she uses a wheelchair, and a key walker (a walking frame) but she still does ballet lessons (with a lot of help!) she still does bike rides (ok, on a trike), she still leaps about on the trampoline (ok, kneeled up) but you get the point.
Kids just get on with these things, in my case it is the parents who have the difficulties.
In fact my daughter uses it to her advantage.
The other night she wouldn't settle down to sleep and wanted to goon about. I explained that all her friends, cousins etc were asleep so she had to, she wasn't any different to anyone else.
"Actually I am different, I'm disabled, so I'll do what I like!"
I didn't know whether to laugh or cry really.
So kids are very tough and strong, they will just get on with it. Once I learned to live with it you just get on with it. It's not easy but neither are kids!
To be told that our daughter had a catastrophic brain injury during child birth was very difficult and I don't think I am over it even now.
But at seven years old I don't think there is anything she can't do, she just does it differently. Yes, she uses a wheelchair, and a key walker (a walking frame) but she still does ballet lessons (with a lot of help!) she still does bike rides (ok, on a trike), she still leaps about on the trampoline (ok, kneeled up) but you get the point.
Kids just get on with these things, in my case it is the parents who have the difficulties.
In fact my daughter uses it to her advantage.
The other night she wouldn't settle down to sleep and wanted to goon about. I explained that all her friends, cousins etc were asleep so she had to, she wasn't any different to anyone else.
"Actually I am different, I'm disabled, so I'll do what I like!"
I didn't know whether to laugh or cry really.
So kids are very tough and strong, they will just get on with it. Once I learned to live with it you just get on with it. It's not easy but neither are kids!
I hope it didn't come across as a 'woe is me' type of post, what I was trying to get at is that kids are very strong, and in my case certainly it was me that needed a arm round the shoulder at various times, and there are and will be plenty of people that will be able to do the same for you.
With regards to my daughter, yes she knows exactly what buttons to push, very clever!
With regards to my daughter, yes she knows exactly what buttons to push, very clever!
Oh I agree Eric, and no it didn't come across as that. After what has gone on I felt your pain.
As someone else said earlier on it's only me who will cause a problem.
As the days go on we are both getting to grips with it, I went to work today and apart from some costly crap that's gone on I enjoyed it and felt good.
I am coming to the opinion that none of us know how long us or loved ones will be here, as such it is SO important to make the most of life. It's made me want to work even harder so I can give her life experiences even I haven't had (plus I want them as well
)
I also think I've been incredibly blasé about health in general, I have taken it for granted. I appreciate it more than ever, once a couple of years ago I had a small cancer scare, of course it was ok and I'm back taking for granted good health.
We all get one life, and as they say it isn't a dress rehearsal
As someone else said earlier on it's only me who will cause a problem.
As the days go on we are both getting to grips with it, I went to work today and apart from some costly crap that's gone on I enjoyed it and felt good.
I am coming to the opinion that none of us know how long us or loved ones will be here, as such it is SO important to make the most of life. It's made me want to work even harder so I can give her life experiences even I haven't had (plus I want them as well
) I also think I've been incredibly blasé about health in general, I have taken it for granted. I appreciate it more than ever, once a couple of years ago I had a small cancer scare, of course it was ok and I'm back taking for granted good health.
We all get one life, and as they say it isn't a dress rehearsal
m3jappa said:
4:30pm Wednesday that all comes crashing down, a phone call from great Ormand street explains the heal prick test has shown she has cystic fibrosis and they want us to come in at 11 the next morning.
Sorry op nothing to add with regards to your situation but would just like to point out the heel prick test, it wasn't something I'd heard of until a few weeks ago when a relative had a baby, they were offered the test and agreed to having it done (I get the impression that they didn't fully understand it but just said yes as a reaction)For most conditions I guess they become apparent eventually, but this better early diagnosis in their case made a huge difference to the potential outcome for the baby. Luckily/unluckily the test came back with a diagnosis of PKU
http://www.nhs.uk/Conditions/Phenylketonuria/Pages...
If anyone's offered the test take it.
I agree with having the heal prick test done, it can and does save lives, madness not to IMO.
In any case we have had some good news this week, the little ones test results have come back as pancreas sufficient and also the actual r117h gene type has come back as r117h 7t/9t.
Right now I'm not sure what the 7t/9t means but it is good. I can only assume they can't determine it's 7 or 9 or there are two tracts there. Even the hospital didn't know so at some stage I'm hoping a consultant can tell me.
It's so rare I can't find anything apart from one forum post and one medical study. In some countries it appears it wouldn't even be classed as cf.
while it would have been nice to have not had this in a way I'm pleased it's been picked up. Gosh is such a good hospital, she's in the best hands no matter what. She may or may not ever have problems. But if she does they are there. We've started the physio already which I can clearly see is great. If you keep the lungs clear then infection is less likely to set in which is why even with more severe cases life expectancy is so much better.
I'd like to thank everyone so much for the advice in what's been the darkest week of our lives, your posts and comments really helped us both. You have all helped lift that dark cloud
In any case we have had some good news this week, the little ones test results have come back as pancreas sufficient and also the actual r117h gene type has come back as r117h 7t/9t.
Right now I'm not sure what the 7t/9t means but it is good. I can only assume they can't determine it's 7 or 9 or there are two tracts there. Even the hospital didn't know so at some stage I'm hoping a consultant can tell me.
It's so rare I can't find anything apart from one forum post and one medical study. In some countries it appears it wouldn't even be classed as cf.
while it would have been nice to have not had this in a way I'm pleased it's been picked up. Gosh is such a good hospital, she's in the best hands no matter what. She may or may not ever have problems. But if she does they are there. We've started the physio already which I can clearly see is great. If you keep the lungs clear then infection is less likely to set in which is why even with more severe cases life expectancy is so much better.
I'd like to thank everyone so much for the advice in what's been the darkest week of our lives, your posts and comments really helped us both. You have all helped lift that dark cloud
m3jappa said:
I agree with having the heal prick test done, it can and does save lives, madness not to IMO.
In any case we have had some good news this week, the little ones test results have come back as pancreas sufficient and also the actual r117h gene type has come back as r117h 7t/9t.
Right now I'm not sure what the 7t/9t means but it is good. I can only assume they can't determine it's 7 or 9 or there are two tracts there. Even the hospital didn't know so at some stage I'm hoping a consultant can tell me.
It's so rare I can't find anything apart from one forum post and one medical study. In some countries it appears it wouldn't even be classed as cf.
while it would have been nice to have not had this in a way I'm pleased it's been picked up. Gosh is such a good hospital, she's in the best hands no matter what. She may or may not ever have problems. But if she does they are there. We've started the physio already which I can clearly see is great. If you keep the lungs clear then infection is less likely to set in which is why even with more severe cases life expectancy is so much better.
I'd like to thank everyone so much for the advice in what's been the darkest week of our lives, your posts and comments really helped us both. You have all helped lift that dark cloud
How is it going M3, any more developments? Are you ok?In any case we have had some good news this week, the little ones test results have come back as pancreas sufficient and also the actual r117h gene type has come back as r117h 7t/9t.
Right now I'm not sure what the 7t/9t means but it is good. I can only assume they can't determine it's 7 or 9 or there are two tracts there. Even the hospital didn't know so at some stage I'm hoping a consultant can tell me.
It's so rare I can't find anything apart from one forum post and one medical study. In some countries it appears it wouldn't even be classed as cf.
while it would have been nice to have not had this in a way I'm pleased it's been picked up. Gosh is such a good hospital, she's in the best hands no matter what. She may or may not ever have problems. But if she does they are there. We've started the physio already which I can clearly see is great. If you keep the lungs clear then infection is less likely to set in which is why even with more severe cases life expectancy is so much better.
I'd like to thank everyone so much for the advice in what's been the darkest week of our lives, your posts and comments really helped us both. You have all helped lift that dark cloud
Again thanks all
No new news really, she had her lung test done, 2 results normal one slightly above which is being disregarded as the other two are alright.
She is really well and even said hello a couple of times (at 3 months)
She cultured psuedonomas bacteria which we don't know where it came from but it cleared in days with anti biotics and has been clear now. We do have a dog and I work with soil so very likely from one of us (it lived in soil and stagnant water).
They are also now calling her diagnosis cf spid which basically means she's screened positive but hasn't actually got classic cf.
half the medical community don't want her genes to be called cf and half do for safety's sake.
She's a lovely little thing
No new news really, she had her lung test done, 2 results normal one slightly above which is being disregarded as the other two are alright.
She is really well and even said hello a couple of times
(at 3 months)She cultured psuedonomas bacteria which we don't know where it came from but it cleared in days with anti biotics and has been clear now. We do have a dog and I work with soil so very likely from one of us (it lived in soil and stagnant water).
They are also now calling her diagnosis cf spid which basically means she's screened positive but hasn't actually got classic cf.
half the medical community don't want her genes to be called cf and half do for safety's sake.
She's a lovely little thing
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