Anyone has or heard of Fallot's tetralogy

[DIANNEKB]

has anyone heard of the above or who's bubs has had it???

We got the devestating news today that he has this which is defects to the heart which will require open heart surgery when he is 6 months old.. I am absoultely freaked out as my bubs is only 5 weeks old today and I am totally gutted by it... I have been told the success rate is 98-99% which is excellent... I would just love to talk to anyone else who has experienced a similiar experience...

Di..xxx

[JenNT]

Sorry Di, I have never heard of it. I just wanted to send you a hug, i hope all goes well for your little cherub.

All the best, Jen

[cwsmum]

Sorry, I haven't heard of that either. Hope everything goes well for you and bub is better soon :)

[Ffrenchknickers]

Sorry i havent heard of it either but I just wanted to wish you all the best. I wil be praying for a postive outcome (99% is great!) for your little bubba:) Take care of yourself:kiss:

[Mother Duck]

Good luck with finding out more info - maybe the net has a group on it somewhere more specific??

In the meanwhile, I am thinking of you - they are sssoooo precious, I just can't even imagine how you must be feeling.

Keep that success rate in mind and best of luck!!!

[reAllytee]

Oh you poor thing !
Sorry to hear of your news i hope all goes well ... We will be thinking of you & praying for you.
Take care of yourselves :)

[Rell]

Sorry I don't know of this condition but I do know a little bub who underwent open heart surgery when he was 4 mths old (whole in heart).Every thing went well for him and he is now a healthy 8mth old.
Best of luck
I'm sure your little man is a fighter and will get throught the surgery with no problems.

[Rockett]

I haven't heard of it either sorry Di,but I too just want to send a hug to you and your little man,take care and good luck!:)

[DIANNEKB]

Thanks everyone for your kind words...

Went to the cardiologist again today to get briefed on it again... if anyone is interested this is what it is...

Where there is meant to be a muscle lining the 2 lower chamber of the heart mine has a hole and the muscle as grown toward one of the artery thingies (forgot the name) and has made the opening small and the actual artery thing itself is narrowing... so they have to go in and cut them to make them bigger and fix the hole in the chambers.... we have to wait till he is between 6-8 kgs which will be at about 6 months old then he will have open heart surgery to correct it... :(
This is a very fixable problem so we are just hoping it will all go well adn no complications will arise from it... I am staying positive but as hard as it is I have to try to forget about it until the surgery ... apart from if he has the spells where they find it hard to breathe and they turn blue and can end up unconcious... :eek:
but I have been given the warning signs for them and if they do happen it just means surgery will happen sooner rather than later.

My son is just the most precious thing in the world to me and no doubt the 6 hours he will be in surgery will be the ahrdest longest wait of my life.

Thanks to everyone who has listened to me.
Di..:kiss:

[reAllytee]

Oh hun you & your little one are in our thoughts & prayers.
Love him like always & know that things will be corrected in time when he is strong enough. For now get that good mumma milka into him :)
Keep us updated & pm me if you need to talk take care :)

[xkwzit]

Hi Dianne
This must be awful for you. I can't even imagine how you are feeling. It is an enormous thing to have to process.

I just wanted to say how sorry I am that you have to be going through this. New borns are so tiny ... try to keep your mind on the positives and we'll all be here for you to unload yourself.

Hugs

[Manxie]

Hi Dianne

Sorry but I havent heard of this condition either but like others have said I'm sure you will be able to find support out there. Where is bubs going to have the op? I'm sure that the hospital will be able to give you some information which you can read - its always easier to take it in when its written. Also they may be able to put you in contact with others who have had bubs going through the surgery.

If you dont have any luck finding any information here in Oz there is a fantastic hospital in England that specialises in heart and lung problems called the Royal Brompton & Harefield NHS Trusthttp://royalbromptonlive.demo.eibs.co.uk/welcome/about/contact

Royal Brompton Hospital, Sydney Street, London SW3 6NP
Tel: 020 7352 8121
(The office is near Reception in Sydney wing)
or
Harefield Hospital, Hill End Road, Harefield, Middlesex UB9 6JH
Tel: 01895 826 572
(The office is near Reception)

I am sure that they would be happy to send you some information or point you in the right direction.

Wishing you all the best and keep us posted on how it all goes.

[Rockett]

Hi Di
Thanks for explaining the condition...how did they know he had this problem?

Again,wishing you lots of luck and positive thoughts.:)

[lukaelmo]

Hello Dianne, I just wanted to let you know that I was talking to a friend a few days ago who mentioned that her sister's son (they aren't close and I don't know her, hence the casual reference) had just undergone successful corrective heart surgery at the age of 6 months.

Your little man is going to get through this just fine, as are you and your family.

[DIANNEKB]

They actually heard a heart murmur when he was born and they checked it out by way of an ECG and that is how they detected it .. later on if its detected they would know by the skin taking on a bluish colour hence the nickname for it is blue baby...

he will be going to Princess Margaret Hospital which is one of the best I hear..
My mums friend's niece I found out today had the same op done at the same hospital and she was only diagnosed at 10months and had the op 6 wks later and he is fine so with that in mind I am a bit more relieved ... but hey the op is a few months away so I have 2 forget about it for the time being and get on with life with bubs and enjoy it... I will worry about it when the time comes even though it will be hard...

thanks again everyone for your support...:kiss:

Di.. xxx