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heart problems Rss

we have a six wk old baby boy and were told at 1 wk that he has "Tetralogy of Fallot", which is basiclly 4 problems with his heart including a large hole and an overriding aorta, i was just wondering if anyone has had a child with the same or a similer problem that can give me some advice or and information on this, as i am finding this to be a tad overwelming and stressful!! any help would b soooo welcomed!! thanks.

nat, nsw 2 beautiful boys

Sorry I can't help - but I would like to send our best wishes.

Deb and Hamish

Deb, Edmonton, Hamish 26/03/03 Toby 16/03/05

thank you very much deb and hamish!

nat, nsw 2 beautiful boys

hi, i can totally understand how stress out you must be. when my little girl was 2 days old she was told that she had weak feminal pulses, (which is the pulses in her groin). the casuse of this might have been due to a blockage in her aorta. we live 3 hours south of brisbane and we were told that we would have to wait for 2 weeks before we could see a specialist. we didn't want to wait, so we told the doctor that we would pay to have her looked at at brisbane. when the doctor rang mater childrens hospital they flew a helecopter down at 2am. we where told by the brisbane doctors that if she did have a blocked aorta that she could die on the 5 day of her life. our local doctors we going to wait 2 weeks before they would see her!!! thank goodness she didn't have a blockage but it certainly was a stressfull few days. i know that my story isn't the same as yours but i just thought that i would let you know that you are not alone. you would never think that it could happen to you and it isnt always the begining you hope for. good luck and take care.
hi well i dont have a child of my own with a heart problem but when my brother was born he neally died because he had a hole in his heart and he also has something wrong with one of the vowls going to his heart he has to keep going back every 2 years or so to get it checked. i hope everything goes well for you and your son thinking of you and good luck.
thanks so very much both natalie and lou2. it is good to know that it is not only me that is going through or has gone through this trying time in my life!! trying to stay positive at the moment. thanks once again. natalie

nat, nsw 2 beautiful boys

Hi Natski, hopefully by now you have received more information, if not I found the following web site that may help: www.heartkids.org.au. Our daughter was born with two holes in her heart and a leaky heart valve - and was operated on when she was approx 2 months old. We have found both Heart Children NZ and our local support group very helpful. good luck!

Wgtn NZ

Hi there, my six month old son has just been diagnosed with VSD, a moderate sized hole in his heart, which will require surgery soon, they put him on a diuretic which was supposed to help him but it stopped his urine. He has blood and fluid on his lungs and his heart is also enlarged, I can't say I know what your going through but I can offer you my best wishes. Hang in there and take every day as it comes, sometimes I find myself taking every hour as it comes. Good luck!
i can completly understand with u taking each hr as it comes, Braeden started his meds approx 2 wks ago one is a diuretic to stop fluid build up and the other is to stop him having his "spells", our thoughts are also with u, juliarose.

nat, nsw 2 beautiful boys

Hi there natski, thankyou for your kind thoughts. Always appreciated! The surgeons have now taken Miles off the diuretic - Frusemide - to see if that was the reason why he wasn't weeing, it hasn't cleared the blood and fluid off his lungs although he has been on it for two weeks now so fingers crossed! They are going to be booking him in for surgery soon at Starship Hospital but I'm still scared, I know that it is a common operation but any surgery worries me, he has to have three more surgerys after he turns one - on top of this he has hypospadius - that's a flap covering the top of his penis - , his left teste still hasn't dropped from his stomach and the eye of his penis is way off centre so they have to realign. I'm just wondering if it can get any worse. It's heart-breaking when he looks up at me and for no reason he just gives me a great big smile, he's my little man.
thank u for the web address, i found out today that braeden will have to have his op sooner rather than later as the left side of his heart is very enlarged but it has to be done i guess! thanks once again

nat, nsw 2 beautiful boys

hey julia, my fingers r crossed for u also!! Braeden is doing really well on his meds which is actually the same thing that Miles was on he is also on a table called "aldactone", his "spells" have been cut by over half which is great. i completly understand how u feel i was a wreck for at least 3wks after we found out about Braeden, i would just cry when he looked at me, i mean i still have bad days mostly after we have had another doctors appointment or blood test but he is strong as im sure that Miles is and they will both make it through this. its so comforting to know that someone knows what im going through and feels the same as me, although i would never wish this upon any other parent, just know that u r not alone julia, we have to stay strong for our beautiful boys. my eldest Tylar still does not know that there is anything wrong with his baby brother, i dont know if its beacause i just dont want him to have to deal with something like this or i dont want to face it myself!? hope to hear from u soon with some good news about Miles.

nat, nsw 2 beautiful boys

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