Anyone with a child with Cystic Fibrosis?

[GypsyDancer]

Hi
Not sure if im in the right section but last night i got told my little boy whose nearly 3 weeks old has cystic fibrosis as both my partner and I are carriers..
were absolutely devastated as neither of us had any knowledge of it in our families..
right now im feeling tons of emotions from guilt to sadness..
I feel like my whole world has come crashing down on me, and my beautiful little boy seemed so healthy and i was just starting to settle into parenthood and now all i can think about is how he's going to be on tablets for the rest of his life..how he probably wont be able to have children and how he probably wont live as long as he should..im absolutely gutted and deep down depressed..
I dont want to sound selfish and self absorbed as i know theyre could be so many worse things wrong i just really am so sad and in disbelief that this came out of the blue..and my whole outlook on being a mum, and his life and my dreams i had for him have dissapeared..
Im really just wondering if anyone else has any experience of cystic fibrosis?
Id love to hear anything positive x

 

[TattiesMum]

I don't have a child with Cystic Fibrosis myself Hon, but I just wanted to share my experiences of my daughter's friend - who does have it

I first met C when she was 4 - she started nursery with my eldest and they became firm friends.... she was a sunny, mischevious, bright and happy little girl who did everything that her friends did - she went swimming, played the same games, went to her friend's houses for tea, had sleepovers etc

She's 21 now - having made it through her teens with all the normal ups, downs and emotional dramas, and through Uni. She's starting out on her adult life with a new job and has moved away from home so we haven't seen her for a while, but neither C or her parents ever let her CF define her or her life .... she's just C

I know it's a dreadful shock Hon - but it really isn't all doom and gloom - the current life expectancy is into the 4th decade - but 24 years ago it was only 17, so by the time your LO gets anywhere near his 30's it will without question have jumped again or a cure may have be found - especially with gene therapy developments And - although many men with CF are infertile they aren't sterile and can usually have children using assisted conception methods

Thinking of you Your little boy is gorgeous by the way What a poppet!

 

[GypsyDancer]

I guess there isnt alot of people here with children with cystic fibrosis?

But i want to thank you for your reply, I had my first hospital appointment today and got him started on all his different medicines so your comment has really cheered me up and made me feel very optimistic..i think i'll have to take a reread of it every time im feeling down.

Thankyou x

 

[TattiesMum]

I'm so glad you are feeling more positive

There is one other Mum on here that I know of with a LO with CF - xLisax . Her Max is gorgeous and CF doesn't restrict his life at all ..... I'm not sure whether she posts in this section, but I'm sure she wouldn't mind you sending her a PM

 

[Caezzybe]

Hi there, I don't have a child with CF, but my son does have Down's Syndrome (diagnosed after he was born). I can relate to what you're going through as I've been there as well with things like life expectancy, probably not being grandparents, a lifetime of treatment, tests etc. We are waiting for our son's full genetic profile to come back to find out if it's hereditary or not (we want another child, so need to know). We were absolutely devastated too on the day when we were first told, but it does get easier to cope with knowing your child has special needs as time goes on (even though I know that my baby boy has many medical tests to come in the near future and the outcome of these is currently uncertain). I found the Down's Syndrome Association website very useful and a source of comfort in the darkest time at the beginning. Their New Parent's Guide is specifically aimed at parents with Down's Syndrome, but there are some words of comfort in there for parents of all special needs children no matter what the disability or difficulty, including the famous "Welcome to Holland" words. Here is a copy, linked below in case you find it useful:

https://www.downs-syndrome.org.uk/i...blications/general/new_parents_guide_2006.pdf

The Cystic Fibrosis Trust look to be the organisition in the UK that would be useful to you, but they don't appear to have much in the way of online information for parents. However, there is a phone number to call for an information pack if you don't already have this?

https://www.cftrust.org.uk/aboutcf/newdiagnosis/

I'm not in exactly the same situation as you are but can understand what you are going through. Big hugs to you and I hope that things are positive and that everything works out for you as far as possible.

 

[MrsRabbit]

I'm so sorry. My daughter's newborn screening came back for CF. She was positive on her first sweat test and negative on her second. We're waiting to see the genetics doctor as DD has been sick and we don't know what's going on.

I hope only the best for you and your child.

I didn't know I was a carrier until after I was already pregnant. Also - they only routinely check for the most common forms of it. DH could carry a more rare form of the gene.

 

[ZubZub]

Hi

I have been off this site for a while so only picked up your post now. I'm really sorry to hear about your experience. My sister has CF. First, I want to say that having a sibling with CF is completely different to having a child with it, as you don't really get burdened by it like a parent does. I only realised that when my child was diagnosed with down syndrome and we went through a time of wondering if we'd ever wake up happy again, like our whole world was imploding. I especially felt such grief, like I'd lost a child and I guess you do lose something - the perfect, happy ending that you expected. And so you must grieve. But it does get better, I promise. Just hang in there and slowly you start to fall in love with the little person that your child is, and look past their problems. You start living from day to day instead of worrying about the next five, 10, 15 years. It's hard to imagine now, I'm sure, but you'll get there. My sister is turning 30 in January. She has had her ups and downs, but has been married and has a beautiful 3 year old daughter (who is a carrier but otherwise unaffected). She swims and runs every week. She played for the first squash team at school and was mayor of the junior city council in our town. I won't lie and say it's all been easy. She can't eat foods like curry and fatty foods as her digestive system doesn't cope, and recently she's really battled with chest infections. But the UK is really sorted in terms of support. In London there's the biggest CF clinic (Royal Brompton) in Europe. If you want to chat more - or even better, chat with my sister - please email me. I understand if you feel you can't deal with it at the moment, so even if it's 6 months time, or whenever, give me a shout.

Take care and be strong. Shit happens, sometimes spectacularly so, but your little man will still rock your world.

XX

 

[velvetina]

Hi hun, just wanted to offer and I am sorry you are having to deal with this huge range of emotions at this precious time with your lovely little one.

I worked with a lady who has CF, she celebrated her 30th birthday while I was there (this was 8 years ago now) and on a previous board I also knew of a young couple the husband had CF and they were ttc with assistance.

Some very kind and wise words posted here, Zub Zub is right, you need to grieve for the expectation of what you thought was going to be, and that didn't include the worry and depression you are currently feeling. It's the initial shock and fear that strikes you and your emotions are all over the place as it is.

Take some time hun, be gentle with yourself x

 

[jaytee.]

I'm really sorry to hear about that, love to you all. I haven't got a child, I'm 17 and one of my friends has CF, just thought I'd share with you so you can see that people really can live a normal life in their teens with cystic fibrosis. My friend was diagnosed as a baby too, so has always been aware of having CF since being a very young child, and he doesn't let it stop what he wants to do, at all. He is one of the most active people I know - he does Bowls club twice a week, which is a county team, he leads Boys Brigade once a week and Sunday school at his youth church, he plays ping pong and tennis all the time and is just generally so busy! He really has a great spirit and lust for life which I think he may even have more so than other people as he seems to be more appreciative of things. He really is an inspiration to me and others, he manages to do all this plus his A Levels while still going to hospital for his regular checks and physio. He recently told me that in some ways he is glad that he has to do these things because he has made so many great friends in the nurses and health workers and built relationships with people that he wouldn't have otherwise, and that he has learnt so much about health and science, which interests him. I find that just amazing that someone can be such a positive person - you should hopefully feel optimistic in knowing that your son could be just the same, loving life and enjoying everything he has! It doesn't have to burden him like you think it might, of course it will be hard but I really think you could be surprised at how much better things will be than you may think now.
Try to keep my friend's story in mind when you are worrying about your son's future
He is beautiful, you must be so proud! Congratulations and best wishes to you all

 

[mom22boys]

I went to church with a young man who has it and he is in his 22 and doing great.

 

[Tinkerbell3]

Hi,
I hope things are starting to get a bit easier with coming to terms with the diagnosis and you are not finding it too difficult dealing with the medication.

I do not have a child with CF so can not understand exactly how are you are feeling but I do suffer with it myself, I was diagnosed at 9 months old and it was very difficult time for my mum (which I am sure you understand) before I was diagnosed she had never even heard of CF or aware that she was a carrier.
She found it hard to take it and didn't recieve much support, was basically handed aloud of medication and told when i needed what and that I'd be lucky to reach 5, she spent alot of the time when i was first diagnosed feeling upset, angry basically all the emotions you mentioned you are going through.

Well here I still am years later, I'm a month of 27 and keeping pretty well. I haven't been into hospital for about 10 years, have IV antibiotics once a year at the moment and still have a stable lung function around 85% with a healthy weight.

I won't lie and say things have always been easy and if you have CF you can live a normal life as there as so many factors which can change things and there are of course different levels of how severe a persons CF can be but it isn't all doom & gloom.
I had a very normal childhood, did almost everything that everyone else did - yes I had bad chest infections at times that needed treating with IV antibiotics and hospital stays, yes a day hasn't gone by where I haven't had to take tablets and when I was 16 I was diagnosed with CF related diabetes but you get used to it, I never felt as a child I was 'different' because I had to took pills or something, I grew up not knowing any other way and it just became an everyday part of my life.

I have been living in my own flat with my fiance for 4 years now, been on many fabulous holidays, planning my wedding for 2012 and have now decided to start trying for a baby and just because of the CF i don't feel my life is that different to my friends. You just learn to live with it in the background and not let it take over your life.

If you have any questions, ever want to ask me anything please feel free send me a message and I will try to help all I can.

Hope your gorgeous boy is keeping well and wishing your family a lovely christmas xx

 

[HopefulMi]

Hi
Our baby (who is still cooking) doesn't have CF, but does have another, much rarer autosomal recessive disease, ARPKD. I just wanted you to know, all the devastation, guilt, anger, fear, etc you feel, I have it too. Our child may not even survive her first month of life, we don't know. She's our first and I'm scared to have any more now. If you ever need to talk, just message me.

Naomi

 

[xLisax]

Hi hun Ive only just seen this or would have commented earlier

Thank you Tattiesmum for thinking of me to talk to

Our little man has CF and was diagnosed at 2 weeks after Meconium Ileus (A bowel blockage) and surgery at 2 days...it was all very scary and I know just how you are feeling, its such a blow and you feel so many emotions its unreal.

I just want to tell you how much different our experience has been with CF so far than we expected..Max is thriving brilliantly and most people dont believe us when we say he has CF He has never had troubles putting on weight and has less illnesses than my 7 year old sister The medication and things sounds so daunting but trust me, it will soon just slot right in.

I'll send you a PM if you dont mind so you can chat and ask any questions you'd like We're currently expecting number 2 and just about to go through CVS, so I can talk to you about any of that if youd want to too

Hope you're ok hun

xx

 

[angelic000]

Hi Ladies, not sure if anyone checks this thread anymore however I have just gone through what Gypsydancer did in October last year. My 4 week son was diagnosed with CF they dropped the bombshell last week on Monday. Initially both my husband and I were devasted especially as we had already had a trying 3 weeks what with him being born by emergency c section under a general anesthetic which was v scary at the time. Also getting readmitted into hospital on his 10 day check up as he had lost too much weight it has already been a rollercoaster of emotions this felt like the final straw. However one week on feeling much more positive and stopped the why me why us way of feeling. We did not know we were both carriers or that it was in the family. Everyone was so shocked and really we are still coming to terms with it. However everytime I look at Freddie I feel so lucky that I could have him and will just have to wait and see what happens I guess. The team at the Royal Brompton Hospital seem great really supportive and at least it has been found early. Would love to hear from any of you.

x

 

[Tinkerbell3]

Hi Ladies, not sure if anyone checks this thread anymore however I have just gone through what Gypsydancer did in October last year. My 4 week son was diagnosed with CF they dropped the bombshell last week on Monday. Initially both my husband and I were devasted especially as we had already had a trying 3 weeks what with him being born by emergency c section under a general anesthetic which was v scary at the time. Also getting readmitted into hospital on his 10 day check up as he had lost too much weight it has already been a rollercoaster of emotions this felt like the final straw. However one week on feeling much more positive and stopped the why me why us way of feeling. We did not know we were both carriers or that it was in the family. Everyone was so shocked and really we are still coming to terms with it. However everytime I look at Freddie I feel so lucky that I could have him and will just have to wait and see what happens I guess. The team at the Royal Brompton Hospital seem great really supportive and at least it has been found early. Would love to hear from any of you.

x

Sorry to hear about your son's diagnosis Glad to hear you are feeling more positive, it's good that your son was diagnosed early as I mentioned above I wasn't diagnosed until I was 9 months and that was with my mum keep going on & on to the doctors that something wasn't right but she kept being told she was being overly paranoid being a first time mum etc.

I posted on this thread a while ago, my post should be at the top of page 2. As you can read from it I'm 27 and have CF myself, if you ever have any question, want to talk or ask me anything please feel free to drop me a message. Sometimes it's nicer to have answers from 'real' people who are going through something rather than just the doctors medcial point of view xx

 

[angelic000]

Thanks Tinkerbell your story certainly gives me hope and it is nice to speak to someone who actually has the condition. When I get a chance I will re read this thread. Also we are going to the Royal Brompton tomorrow for 2 days for some kind of parent workshop which will explain more about the condition. I am sure in the coming weeks we will have lots of questions. At the moment my brain is finding it hard to absorb all of the information. Nice to meet you xx

 

[xLisax]

:wave: Hun Your situation sounds so much like mine, we had no clue we were carriers/no CF in the family and it was just such a shock! Max was born with Meconium Ileus (A bowel blockage) and had surgery at 2 days..this is why they did CF testing on him, we found out when he was 2 weeks old. I am now pregnant with number 2, we've been through all of the testing and are delighted that this baby isnt even a carrier of the CF gene

I am always here to chat too, if you have any questions whatsoever, please just drop me a PM

Take care hun

xxx

 

[angelic000]

Thanks Lisa for your reply and Congrats on your pregnancy that is fab news especially re the CF result.
I will PM you xxx

 

[meganmartyn]

I have a 2.5 year old who was diagnosed with Cystic Fibrosis at 3 months old. It is very daunting when you first find out but eventually you come to terms with it as for your son he will know no different to him life will be totally normal as that is all he knows.

I won't lie you do have good and bad days especially for me at the moment as my son is refusing to eat and you can't help but worry.

It is hard work when they get older as they refuse to take meds but you have to be really strong and just do it. I find the quicker you do it the less painful it is for you and him.

Physio can actually be lots of fun. Now my son is older we do lots of tickle time and chasing each other and trampolining. It actually gives you quality time together as well.

Don't ever blame yourself as there is nothing that you could have done to alter the situation.

All I can say is that other than him having to take meds everyday life is not really any different for him than it is for my daughter and children are very adaptable. Yes they get more poorly than most but all the times you see them smiling and running around like any other child their age outweighs the times when they are poorly.

Hi
Not sure if im in the right section but last night i got told my little boy whose nearly 3 weeks old has cystic fibrosis as both my partner and I are carriers..
were absolutely devastated as neither of us had any knowledge of it in our families..
right now im feeling tons of emotions from guilt to sadness..
I feel like my whole world has come crashing down on me, and my beautiful little boy seemed so healthy and i was just starting to settle into parenthood and now all i can think about is how he's going to be on tablets for the rest of his life..how he probably wont be able to have children and how he probably wont live as long as he should..im absolutely gutted and deep down depressed..
I dont want to sound selfish and self absorbed as i know theyre could be so many worse things wrong i just really am so sad and in disbelief that this came out of the blue..and my whole outlook on being a mum, and his life and my dreams i had for him have dissapeared..
Im really just wondering if anyone else has any experience of cystic fibrosis?
Id love to hear anything positive x