Beautiful 15 day old DD just diagnosed with Cystic Fibrosis. Help.

[twojumpingbeans]

ok, never posted here before. I don't really know why I am, I don't know what to think or do with myself. My DD has got cystic fibrosis, DH and I are both carriers, we never knew. They are going to test her big sister too.

My whole world has been turned upside down. I don't even feel as though I can breathe. I love her so much.

Have no knowledge base on this but didn't want you to go unsupported. Take your time, she is still lovely and cuddly and huggy and enjoy her to the max. Life will be more tricky but it will still be good and treatments for this condition have advanced so much since when we were small. Just lots of hugs and very best wishes to you. This is the worst time, now. You and your partner will become very strong and be able to face things you never knew possible. Things that destroy others will be hard for you but not ever as bad as this time now. You will need to treat yourself and each other as if you are grieving and just like grief affects people differently you will need to realise that your partner and others in the family might react differently than to you. You also have vast mounts of hormones raging in you and are just getting over the birth. Give yourself lots of time and perhaps get someone else to tell outer family members and friends and be a bit of a block between you and them. You really don't need daft comments from well meaning people right now. Including me. So I'll bugger off and wish you and your lovely baby and family every best wish.

Thank you x

Congratulations on your new daughter. Sorry to hear you have had such emotional news about her condition. I can't offer any direct advice but might suggest you could also post this in Children's Health as there may be more parents reading there who can give you their experience and input.

Congratulations on your beautiful daughter! I know how tough it is to get a diagnosis like this (my son has Down's Syndrome) but as flyingmum says, treatments have improved so much and will continue to do so. It is going to be a challenge, but your DD has every chance of living a fulfilling and enjoyable life. A word of advice, try not to read too much on the subject right now, the info on the internet especially can be overwhelming and usually has not much bearing on reality. As regards telling people, I wrote an email to friends and family explaining the situation and asking them not to call for the time being. But when you get around to it, do post pics on facebook etc., it will cheer you up to hear how much your friends admire your DD:)

Congratulations on your new DD.
Have no direct experience of CF but did not want to read and run.
RingEir has offered some lovely advice.
Take some time to digest what you have been told, stay away from Google and enjoy the early days with your beautiful DD.

I'm sorry you've just had such a big shock.

I just wanted to say I have a 30 year old friend with CF, and taught a teenager with the condition. (Both very beautiful people - inside and out - so your daughter is in good company!)

I would advise you to contact the CF Trust, if you haven't already - my friend speaks very highly of them, and they have a helpline you can call if you need to chat about the diagnosis.

Congratulations on the birth of your DD.

I also have a child with CF and found invaluable information from the CF Trust this is the parents and Carers section, which has lots of newly diagnosed parents (and lots of parents who have older children) who have all been where you are and felt how you are currently feeling. Your not alone sweetheart and the prognosis for your daughter is far greater than the last few decades. Life expectancy is in its 40/50s and that applies to those adults with CF now - babies born now are likely to have long happy and fulfilling lives.

How was she diagnosed? Was it heel prick or MI? Either way I hope she is developing well, and as much as it pains you, an early diagnosis is such a good thing as she can get her treatments started now and it makes such a difference in the long run. Do they know what her genotype of her CF is? There are some potential cures being developed in America for certain genes.

Just to pick you up a bit, my son is eight now, and goes to mainstream school, has had friends over during half term, enjoys a wide range of activities and is a happy go lucky normal boy. He has been painting eggs today and is very excited about Easter eggs on Sunday.

It is a shock so be kind to yourself. But you have a beautiful baby daughter - enjoy her, don't spend all your time worrying (I know that's easier said than done!).

PM me if you want to chat or want any further information xx

Hello,

Congratulations on the birth of your daughter, there is a wonderul forum on

www.cysticfibrosisuk.org

i you want to chat to people with the same diagnosis.

My child takes creon for the pancreatic insuficiency which is associated with CF , we are still awaiting detailed tests for the cause. I have found great support there.
take care
x

Thank you for your messages, I will take you upon that PM Reindeer, we have to go to hospital tmrw and I'm sure I'll have lots to ask. Will also look at the links, thank you.

Just feel so lost and desperately desperately sad. She's so beautiful.

Hello

I used to know of (through friends of friends) a guy with CF. He is married and last I heard had their first child and thriving business. Probably more by now .

Congratulations!