I have a daughter who is now 2 but at 2 weeks old she had her first open heart surgery. Where a shunt was placed. And at 15 mouths old she had a 2nd open heart surgery for the repair. She has checkup's every 6 mouths For Now. And have been recently told she will be good till she is 6 to 7 years old. Reading these comments gives me a lot of hope. thx everyone
I did not have TOF but another (rare!) CHD: mitral valve insufficiency. I had my first operation at 11 months and my second at 8 years of age. I am now 23 years old, in great health, and in my second year of medical school! I came to this video to better understand TOF while studying for exams. Congrats to all who have survived with TOF and still lead a pretty full life:)
I am 22 now. I had my first sugery at 18 months and a second when i was 16. To all the parents who discovered their child has TOF my prays are with you guys.
my son was born with TOF and he had is sx when he was 10 weeks old and he may have another one but its nice that I can see that so many others have it, It reminds me that my son is not alone in this!!! thank you everyone!!!
peace 2 all my TOF survivors.... how has this affected yall lives? i'm 32 and im about to go for an MRI soon.... supposedly there have been issues with leakage... anyone else experiencing this?
Hey i have this iam 26 years old i had it when i was couple months old and my 3rd operation was when i was 5 yrs old sometimes i feel like i cant do nothing with my life cause of it but i do train in the gym and try to stay active job wise is a little rough for me to find. i hope there someone out there that can help me to give some advice on what i should do and what can i do with myself.. thank u..
My son has TOF and he is only 3 months old and he is having the operation at great ormand street and ive just heard theres a 5% chance he might not pull through is this the case???? Any advise would be great.... Luke.
i am 15 years old and i have it too i had my surgery when i was 4 months old. i also need to get another one but i dont know when but im not gunna life in fear , i'm going to life my life. i also go for yearly check ups.
guys dont loose hope...ur still blessed by God...just believe and have faith in him...i feel ur worries...i'll add you in my prayers...God bless u all
i also have TOF i am 21 years old had my first sx when i was 9 months and one when i was 8 yrs old. still waitting to see if i need another one. i have yearly check ups
Im 21 as well and have this. I had surgery at 6 months old as well then again at 2. i have to have another surgery in the next few years, before i have children as my chest caved when i was 2 and its to close to my heart. I as well have yearly check-ups.
I have tof but instead of pulmonary stenosis i have a missing pulmonary valve. I have had 4 surgeries and am 16. every 3-9 years on average i have to have open heart surgery to replace the valve. SO HAPPY TO BE ALIVE!!!!!!
I had this to. I had a surgery when i was 6 months old and another when i was 15 and I am 16 now. One thing for anyone out there who has this just remember that you will get over it and everything will be fine. You just have to remember that one bad card does not mean that your whole deck in life is bad and that you will live you life and have and amazing story to tell.
I have TOf, I had a shunt aged 2 and a total correction when I was nearly eleven...I'm fifty years old now and I have two healthy grown up kids and a long career in nursing. Not bad considering the severity of the problema nd the fact that this type of heart surgery was in it's infancy when I was born.
i no what you mean i had a shunt put in at 6 months old and my "full" repair at 2 and a half. i say "full" because i still have leak and need another surgery. When i had my surgery the girls still didnt survive it as often as the boys. it was still underdeveloped then. but now is WAY better
I have TOF to and ia am 14 years old... I had 2 operations
1. i was 2 years old
2. i was 6 years old
And i have every year on december a meeting with the hospital for checking.. and they said that this year (april/may) i must do antoher operation, but to be shure i have done a MRI scan, and the results was that i didnt have to doing a operation yet,,thank god.. I live in Holland.. and i am a Greek.. I now how it feels..1 tip... pray to god EVERY day,, believe me... It works!!
CHD stands for Congenital Heart Defect not Child Heart Defect, but you are right in the sense that it is present at birth. You are a warrior, congratulations on what you've done. Continue to fight and spread awareness.
I no what it means, i have known sense i was born. But really i rather call it child heart defect, as i have my hole life. When i talk to a person face to face i say Congenital. But so many words could be used inplace of the C. I just rather use Child because its something alot of children fight, and it sometimes gets easyer as you grow...not all the time but sometimes.
My daughter was born with a CHD, she didn't get to live very long at all. We cherish every day we had with her, even if she was able to make it through the surgeries she would still need a heart transplant eventually so for her it wouldn't have ended in childhhod. Just by making this video it shows how important the cause is to you as well. Continue to spread awareness, you are evidence of the miracles modern medicine can do.
I was born with TOF, and I just had my fifth surgery this summer. I made a commercial with pictures and such from the surgery's to Gary Allans Life Ain't always Beautyful song...check it out if you would like. I also thought about doing a commercial to My Wish as well. They are perfect songs. Your video was very informative.
whos the singer?
girlfronkurdistan 1 month ago
I have a daughter who is now 2 but at 2 weeks old she had her first open heart surgery. Where a shunt was placed. And at 15 mouths old she had a 2nd open heart surgery for the repair. She has checkup's every 6 mouths For Now. And have been recently told she will be good till she is 6 to 7 years old. Reading these comments gives me a lot of hope. thx everyone
The555Shorty555 1 month ago
I did not have TOF but another (rare!) CHD: mitral valve insufficiency. I had my first operation at 11 months and my second at 8 years of age. I am now 23 years old, in great health, and in my second year of medical school! I came to this video to better understand TOF while studying for exams. Congrats to all who have survived with TOF and still lead a pretty full life:)
saralikeskiwi 4 months ago
Im a tof survivor =] 1994-2011 17 years and counting im so greatful im praying for all new tof babys love ya guys!
BunnyWonny 4 months ago
I am 22 now. I had my first sugery at 18 months and a second when i was 16. To all the parents who discovered their child has TOF my prays are with you guys.
In5ane956 7 months ago
my son was born with TOF and he had is sx when he was 10 weeks old and he may have another one but its nice that I can see that so many others have it, It reminds me that my son is not alone in this!!! thank you everyone!!!
nibor0421 8 months ago
peace 2 all my TOF survivors.... how has this affected yall lives? i'm 32 and im about to go for an MRI soon.... supposedly there have been issues with leakage... anyone else experiencing this?
TheSpaceJanitor 10 months ago
Comment removed
Invisibleone88 4 months ago
Hey i have this iam 26 years old i had it when i was couple months old and my 3rd operation was when i was 5 yrs old sometimes i feel like i cant do nothing with my life cause of it but i do train in the gym and try to stay active job wise is a little rough for me to find. i hope there someone out there that can help me to give some advice on what i should do and what can i do with myself.. thank u..
Loadedmagsny 1 year ago
Hi ,
My son has TOF and he is only 3 months old and he is having the operation at great ormand street and ive just heard theres a 5% chance he might not pull through is this the case???? Any advise would be great.... Luke.
1986lukey 1 year ago
i am 15 years old and i have it too i had my surgery when i was 4 months old. i also need to get another one but i dont know when but im not gunna life in fear , i'm going to life my life. i also go for yearly check ups.
x0noelle0xx 1 year ago
i had open heart surgery on 1983 tetralogy of fallot!
rjbarajas1 1 year ago
guys dont loose hope...ur still blessed by God...just believe and have faith in him...i feel ur worries...i'll add you in my prayers...God bless u all
shinxuy 2 years ago
i also have TOF i am 21 years old had my first sx when i was 9 months and one when i was 8 yrs old. still waitting to see if i need another one. i have yearly check ups
500gomez 2 years ago 2
how r u now?hows ur life?
shinxuy 2 years ago
500gomez,
Im 21 as well and have this. I had surgery at 6 months old as well then again at 2. i have to have another surgery in the next few years, before i have children as my chest caved when i was 2 and its to close to my heart. I as well have yearly check-ups.
Fruitymonkey88 2 years ago
i have it and i went under operation when i was 13 months old, and all i have to do is take a yearly checkup.
im 16 now and blessed to have no other complications!!!
FilAm4494 2 years ago
God is so Good...im happy for you
shinxuy 2 years ago
@FilAm4494 same here !! its nice to hear other ppls stories
x0noelle0xx 1 year ago
I have tof but instead of pulmonary stenosis i have a missing pulmonary valve. I have had 4 surgeries and am 16. every 3-9 years on average i have to have open heart surgery to replace the valve. SO HAPPY TO BE ALIVE!!!!!!
jpclimbit44 2 years ago
yes so happy to be alive..thank to God
shinxuy 2 years ago
I had this to. I had a surgery when i was 6 months old and another when i was 15 and I am 16 now. One thing for anyone out there who has this just remember that you will get over it and everything will be fine. You just have to remember that one bad card does not mean that your whole deck in life is bad and that you will live you life and have and amazing story to tell.
L00MISFutureDirector 2 years ago 2
i had TOF had surgery at 6 months and am having my second this summer I am 16
inuyashafanx90 3 years ago
I had a surgery when I was 2 months old, and I haven't needed any surgery since. Right now I'm 15! It's incredible what some surgeons are capable of
pianobear7491 3 years ago
I'm a 2nd year medical student covering cardiovascular pathologies right now. This video was great. Thank you much.
vencaytor1 3 years ago
I have TOf, I had a shunt aged 2 and a total correction when I was nearly eleven...I'm fifty years old now and I have two healthy grown up kids and a long career in nursing. Not bad considering the severity of the problema nd the fact that this type of heart surgery was in it's infancy when I was born.
squirrelliz 3 years ago
i no what you mean i had a shunt put in at 6 months old and my "full" repair at 2 and a half. i say "full" because i still have leak and need another surgery. When i had my surgery the girls still didnt survive it as often as the boys. it was still underdeveloped then. but now is WAY better
Fruitymonkey88 3 years ago
I have TOF..i had sugery when i was 2 now im 20! Im blessed and i thank God that i can see another day
iLuvMyBabies1989 3 years ago
also if anyone has any questions about this you can ask me
chrisetownh18 3 years ago
i have this too,, had surgery when i was 2 im 23 now.
chrisetownh18 3 years ago
i had TOF and PS its not cool but i only had one surgry age 6 months
AmberPuleo 3 years ago
I have TOF to and ia am 14 years old... I had 2 operations
1. i was 2 years old
2. i was 6 years old
And i have every year on december a meeting with the hospital for checking.. and they said that this year (april/may) i must do antoher operation, but to be shure i have done a MRI scan, and the results was that i didnt have to doing a operation yet,,thank god.. I live in Holland.. and i am a Greek.. I now how it feels..1 tip... pray to god EVERY day,, believe me... It works!!
zartpele 4 years ago
^^ GOD is so good dude...
09103963103 3 years ago
i was lucky =) great video
AmberPuleo 4 years ago
CHD stands for Congenital Heart Defect not Child Heart Defect, but you are right in the sense that it is present at birth. You are a warrior, congratulations on what you've done. Continue to fight and spread awareness.
AddiesMamma 4 years ago
I no what it means, i have known sense i was born. But really i rather call it child heart defect, as i have my hole life. When i talk to a person face to face i say Congenital. But so many words could be used inplace of the C. I just rather use Child because its something alot of children fight, and it sometimes gets easyer as you grow...not all the time but sometimes.
Fruitymonkey88 4 years ago
My daughter was born with a CHD, she didn't get to live very long at all. We cherish every day we had with her, even if she was able to make it through the surgeries she would still need a heart transplant eventually so for her it wouldn't have ended in childhhod. Just by making this video it shows how important the cause is to you as well. Continue to spread awareness, you are evidence of the miracles modern medicine can do.
AddiesMamma 4 years ago
Thank you for making me aware of congenital Heart defect week. My daughter has a CHD and is ongoing treatment in G
lasgow. It is very hard.
xx
ovrevagen 4 years ago
I was born with TOF, and I just had my fifth surgery this summer. I made a commercial with pictures and such from the surgery's to Gary Allans Life Ain't always Beautyful song...check it out if you would like. I also thought about doing a commercial to My Wish as well. They are perfect songs. Your video was very informative.
BERTTANY17 4 years ago
Excellent video! My unborn baby has this defect so it was great to read about this on here! Thanks.
treepee19 4 years ago
my wish by rascal flatts
Fruitymonkey88 4 years ago
this is great.. who sings the song?
Evaajaline 4 years ago
I was born with this defect too. with pulmanery arteries.
Linzalot 4 years ago
hahaha i no i noticed that like a few hours after i posted it but my com wont let me fix it haha
Fruitymonkey88 4 years ago
Good info but watch your spelling
socrat3s123 4 years ago