my son was born with TOF, and at 19 days old, his heart only the size of a quarter, was repaired at Duke, with a pacemaker put in at 29 days old. his O2 STATS dropped in the 60's the night he went to the hospital, and the night before his surgery, he was on 5L of oxygen, and his O2 stats were in the 50's.....I wish he could have been a little older before his surgery, but thats not my call, that was his call telling us he needed to have it done that early....He is now almost 4 now. and doin ok
I am a Tet. I had open-heart surgery at age 10 in 1972. In january of last year, I had an aortic dissection, resulting in 9 hours emergency surgery and an mechanical valve. I don't think I know any others.
vc só deu sobrevida à esse ser! Fechou o septo, expandiu o tronco pulmonar e previniu a hipertensão pulmonar que um dia, vai acontecer, ou qualquer outra consequencia de uma CIRURGIA PALIATIVA.
Hello Dr. My baby is just 7 days old, & is diagnosis with ToF. what is the right time for surgery. Any good doctor you can recommend in Mumbai? Thank you Dr.
@prateekvishwa Surgery for ToF depends on the patient, my surgery was left until I was 9 yrs old, as they did not know if it was better to have surgery for Kyphosis Scoliosis. Also it depends on whether your child is coping with there breathing and not becoming tired due, too the lack of oxygen in the blood.
At 36 I have been fortunate that I have not needed more surgery. I will leave that in Gods hands, hopefully no more surgery will be needed.
My daughter had tet repair at 4 days old in 2007...shes had several caths since and a second repair at 9 months old because the patch tore. she is now 2 and will need several more surgeries...i've talked to several people with the same heart condition and they have only had one open heart surgery.. How many has everyone had?
I was reading in Wikipedia that the first successful total correction of TOF repair on a 1 yr old was done in 1991. My son had his surgery in 1990. What would make his surgery different from the procedure they are talking about in Wikipedia? My son had everything repaired when he had his surgery. At age 15, he had his ICD implanted and the valve repaired. I believe he also had to have the pulmonary artery opened because of more stenosis. He is now 21 yrs old. Those were his only 2 proced.
I was born in 1987 with TOF. I'm also a twin. I've had 3 heart surgeries, one when I was 2, then 5 and then 19. Today at 22, I can exercise and have no chest pain at all! It's amazing! I got my VSD fixed (A patch or shunt put in) when I was 2 and then the patch blew out so I had surgery when I was 5. Then when I was 19, I had pulmonary valve replacement surgery. Now I'm doing really well! Although I'll need surgery again when the valve fails, but that will be at least 5 years or so from now.
Born in 1979 with Tetralogy of Fallot, the rarest form. I was given a life expectancy of 2 years, I'm 29 now. Left pulminary artory missing and the right narrowed, so my heart pumps blood at roughly 5x the force it should. Its a no win situation for me, but then its not all bad. Afteral I should never have gotten as far as I have.
i had a 17 year old family member die of this in 2001. she had one open hear surgery about 2 or 3 and that was it. but i heard ppl living long lives with this
my 13 month old fell and hit her chin, causing her to bite down which caused one of her top teeth to cut her bottom gum. it only bled for a few minutes. i did not clean or put anything on the wound and the bleeding stopped right away. should this be of concern for endocarditis? she had tet repair at 4 months old.
The doctor also said that my son had 2 fully formed superior vena cavas. I have searched on the internet for information about this. I was looking for a diagram that shows how they enter the heart when there are 2. As far as the pulmonary valve defect, my son was tested for DiGeorge syndrome but it came back negative. Is it rare to have this defect and not have 22q11 microdeletion?
My 9 yr old had this at 15 months old. He also will need an artificial pulmonary valve at some point. I am hoping it takes awhile for him to need it so that the technology can continue to improve. How long does it usually take after TOF repair to need the pulmonary valve?
Pulmonary valve replacement following tetralogy repair will be required in most patients who had a transannular patch (patch across the pulmonary valve ring). this is usually required if the Right Ventricular Chamber starts to dilate (enlarge). this usually takes 10 to 20 years. nowadays we tend to do this before the RV enlarges too much, as this will preserve the muscle function and offer much better aquality of life and less rhythm and failure problems.
From what I understand, his valve was affected by the defect as well. The valve didn't form properly and grew along the wall of his heart. They removed the defective valve during the surgery. I never quite understood this part, but we keep being told he will need a valve later in life.
@hul5078 i have this disease, i had my first surgery very yound, then my second at 5 months, then i had my third one 3 yrs ago at 13 thats when i got the new valve
my son was born with TOF and when he was 10 weeks old he had his surgery. Now hes 4 years old, and the inside of his bottom lip and turned blue, its only been in the last couple of weeks that this has happened, and I had him sit for 10 min. and by that time it had turned back to pink sould I be worried about this??
Following total correction of TOF this should not happen, it may be nothing at all, however I think he should be seen by a pediatric cardiologist to do a 2D-Echo and make sure there is no recurrance of his pulmonary stenosis. good luck
Thank you for the commet back its very helpful. He had a 2D echo done just this past march, and his cardiologist said that he has min. leakage, and min. narrowing. I still am going to take him to another cardiologist. but what exactly does this say about now??
Sounds good. The minimal VSD leak will probably close spontaneously in due course, the PA narrowing might need to be balloon dilated a little later this depends on the location and severity of the narrowing.
my daughter's cardiologist said she needs to take antibiotics before going to the dentist to prevent endocarditis. is this for the rest of her life? how careful do we need to be to prevent this infection? she's always chewing on dirty toys and putting her dirty hands in her mouth. can those acts cause endocarditis?
Endocarditis occurs when bacteria get into the blood stream and affect a cardiac defect like a VSD or an abnormal heart valve. following repair of Tetralogy the patch used for the VSD will be fully covered by the baby's endothelium and cannot be ifected unless there is still a small leak. prophylaxis with antibiotics should continue until the leak has closed completely. Dirty hands and toys will not cause endocarditis, however any infected cut or scrape should be treated.
she had a follow up echo in march, six months after her repair of Tetralogy. they could not find the patch leak but could hear it. her cardiologist is not concerned at all. how much longer till the leak closes on it's own?
If it could not be seen on echo it's most probably closed, following this kind of surgery it is not uncommon to hear a systolic murmur from the RV outflow and this is not important at all.
Wow. This video is wonderful. Thank you for posting it. My daughter has TOF without the overriding aorta. She had surgery in July at 9 months old, and is doing well now. Little to no leakage from the VSD and moderate backflow from the pulmonary valve. The cardiologist says she may need another surgery in 15-20 years to replace the pulmonary valve.
Nowadays the pulmonary valve is replaced without open surgery, it's called a stented valve and is delivered into place in the cath Lab. So that's good news and I'm sure the future will bring even simpler and better technology.
Yes, some patients have small PA's, however following surgery the outflow of the right ventricle is unobstructed and over time the pulmonary arteries WILL grow to an adequate size. If she is left with localized narrow areas, they can be dilated and stented later and this is a simple procedure. Ask your Ped. cariologist. I wish your daughter all the best.
my 7 month old had this surgery at 4 months. how long does the patch last? she has a tiny leak at the bottom end of the gortex patch. her cardiologist said it usually closes up on its own from the formation of scar tissue. we go back in 3 months to check on the leak. i hope it closes. i don't want another operation. is there a good chance it will close on its own?
A small %age of patients have what is called residual suture leak in the VSD goretex patch, these are hemodynamically insignificant and usually close spontaneously.
Dr. post surgery is there alot of scarring of the conduction system? Are these operations likely to cause ectopies? Will this child most likely need to be on amio or dig, or possibly a pacer. Is the ef back to normal? By the way, well orchestrated suturing on the heart. Truly a work of art. I recently had a patient in his 40's with correction of TOF.
The A-V conduction bundle in these babies runs close to the lower edge of the Ventricular septal defect, if the suture line is too close to the bundle complete heart block may occur and the baby will need a pacemaker. I tetralogy of Fallot this is very rare however, (2-3%).
As these children grow older, typically 15 years post operatively, the dilatation of the RV and RA resulting from pulmonary incompetance will lead to rhythm problems that need to be treated + pulm valve replacement.
i also was diagnosed with TOF, i recently had a stent valve replacement in april 07 and am doing fine... i had the operation at the royal brompton in london
My nephew was recently daignosed with TOF.. watching ur video has really helped me understand the proceedure alot.. i have been reading up on TOF and how it can be corrected. thank you..
The unfortunate part is that In my country we do not have the resources to perform such a surgery and i am currently trying to find a DR or Organisation that would help do the surgery on my nephew.. thank you
mines a bit different to that, I have pulmanery artresia too and I've been told by drs that if I have it corrected I may only have 5 yrs left. Thankyou for the advice though and the video because it did make me understand it a little bit more.
Thanks for your comment. I was in the US 25 yrs ago and these oerations were being done at the time, as a matter of fact I have operated on patients that have since graduated university. The oldest patient I have operated with Tetralogy was 49 yrs old. Please see a cardiologist and have the condition assessed now. If the condition is untreated quite serious complications may arise, hopefully not, but nowadays this is simple surgery with excellent results. Good Luck.
my son was born with TOF, and at 19 days old, his heart only the size of a quarter, was repaired at Duke, with a pacemaker put in at 29 days old. his O2 STATS dropped in the 60's the night he went to the hospital, and the night before his surgery, he was on 5L of oxygen, and his O2 stats were in the 50's.....I wish he could have been a little older before his surgery, but thats not my call, that was his call telling us he needed to have it done that early....He is now almost 4 now. and doin ok
walkersdad01 5 months ago
I am an adult survivor of Tetralogy of Fallot. My corrective surgery was done 20 years ago at the age of 22.
jenniferw87 6 months ago
This video is so useful. thx for uploading.
my niece have this TOF too, now she is on Hospital to get the medical preparation for the operation.
TheTinny89 7 months ago
How in the world can they tell what all that stuff in there is...sheeesh its a miracle.
acachubaca 7 months ago
@acachubaca that's why you study dear. You attend college and take pre-med and then go to med school afterwards. :)))) Aside from that, experience.
MsLiberty47 7 months ago
I am a Tet. I had open-heart surgery at age 10 in 1972. In january of last year, I had an aortic dissection, resulting in 9 hours emergency surgery and an mechanical valve. I don't think I know any others.
cearbhaill 8 months ago
vc só deu sobrevida à esse ser! Fechou o septo, expandiu o tronco pulmonar e previniu a hipertensão pulmonar que um dia, vai acontecer, ou qualquer outra consequencia de uma CIRURGIA PALIATIVA.
Diegoamnesia 1 year ago
Hello Dr. My baby is just 7 days old, & is diagnosis with ToF. what is the right time for surgery. Any good doctor you can recommend in Mumbai? Thank you Dr.
prateekvishwa 1 year ago
@prateekvishwa Surgery for ToF depends on the patient, my surgery was left until I was 9 yrs old, as they did not know if it was better to have surgery for Kyphosis Scoliosis. Also it depends on whether your child is coping with there breathing and not becoming tired due, too the lack of oxygen in the blood.
At 36 I have been fortunate that I have not needed more surgery. I will leave that in Gods hands, hopefully no more surgery will be needed.
I pray that you have found a good Surgeon.
celtpro 4 months ago
wow , you need more than a steady hands to do this kind of surgeries
unknown0707 1 year ago
Comment removed
Redmond111 2 years ago
My daughter had tet repair at 4 days old in 2007...shes had several caths since and a second repair at 9 months old because the patch tore. she is now 2 and will need several more surgeries...i've talked to several people with the same heart condition and they have only had one open heart surgery.. How many has everyone had?
whiteboy1354life1 2 years ago
I was reading in Wikipedia that the first successful total correction of TOF repair on a 1 yr old was done in 1991. My son had his surgery in 1990. What would make his surgery different from the procedure they are talking about in Wikipedia? My son had everything repaired when he had his surgery. At age 15, he had his ICD implanted and the valve repaired. I believe he also had to have the pulmonary artery opened because of more stenosis. He is now 21 yrs old. Those were his only 2 proced.
Rottylr 2 years ago
I was born in 1987 with TOF. I'm also a twin. I've had 3 heart surgeries, one when I was 2, then 5 and then 19. Today at 22, I can exercise and have no chest pain at all! It's amazing! I got my VSD fixed (A patch or shunt put in) when I was 2 and then the patch blew out so I had surgery when I was 5. Then when I was 19, I had pulmonary valve replacement surgery. Now I'm doing really well! Although I'll need surgery again when the valve fails, but that will be at least 5 years or so from now.
Barbaracup222 2 years ago
Born in 1979 with Tetralogy of Fallot, the rarest form. I was given a life expectancy of 2 years, I'm 29 now. Left pulminary artory missing and the right narrowed, so my heart pumps blood at roughly 5x the force it should. Its a no win situation for me, but then its not all bad. Afteral I should never have gotten as far as I have.
JoesBlog79 2 years ago
More videos like this (only for physicians) at symposier (.com)
drzugo 2 years ago
i had a 17 year old family member die of this in 2001. she had one open hear surgery about 2 or 3 and that was it. but i heard ppl living long lives with this
ANJEL602 3 years ago
my 13 month old fell and hit her chin, causing her to bite down which caused one of her top teeth to cut her bottom gum. it only bled for a few minutes. i did not clean or put anything on the wound and the bleeding stopped right away. should this be of concern for endocarditis? she had tet repair at 4 months old.
gradius55 3 years ago
The doctor also said that my son had 2 fully formed superior vena cavas. I have searched on the internet for information about this. I was looking for a diagram that shows how they enter the heart when there are 2. As far as the pulmonary valve defect, my son was tested for DiGeorge syndrome but it came back negative. Is it rare to have this defect and not have 22q11 microdeletion?
hul5078 3 years ago
My 9 yr old had this at 15 months old. He also will need an artificial pulmonary valve at some point. I am hoping it takes awhile for him to need it so that the technology can continue to improve. How long does it usually take after TOF repair to need the pulmonary valve?
hul5078 3 years ago
Pulmonary valve replacement following tetralogy repair will be required in most patients who had a transannular patch (patch across the pulmonary valve ring). this is usually required if the Right Ventricular Chamber starts to dilate (enlarge). this usually takes 10 to 20 years. nowadays we tend to do this before the RV enlarges too much, as this will preserve the muscle function and offer much better aquality of life and less rhythm and failure problems.
Good Luck.
bassamakasheh 3 years ago
From what I understand, his valve was affected by the defect as well. The valve didn't form properly and grew along the wall of his heart. They removed the defective valve during the surgery. I never quite understood this part, but we keep being told he will need a valve later in life.
hul5078 3 years ago
@hul5078 i have this disease, i had my first surgery very yound, then my second at 5 months, then i had my third one 3 yrs ago at 13 thats when i got the new valve
MrBFlakes 1 week ago
my son was born with TOF and when he was 10 weeks old he had his surgery. Now hes 4 years old, and the inside of his bottom lip and turned blue, its only been in the last couple of weeks that this has happened, and I had him sit for 10 min. and by that time it had turned back to pink sould I be worried about this??
danish61493 3 years ago
Following total correction of TOF this should not happen, it may be nothing at all, however I think he should be seen by a pediatric cardiologist to do a 2D-Echo and make sure there is no recurrance of his pulmonary stenosis. good luck
bassamakasheh 3 years ago
Thank you for the commet back its very helpful. He had a 2D echo done just this past march, and his cardiologist said that he has min. leakage, and min. narrowing. I still am going to take him to another cardiologist. but what exactly does this say about now??
danish61493 3 years ago
Sounds good. The minimal VSD leak will probably close spontaneously in due course, the PA narrowing might need to be balloon dilated a little later this depends on the location and severity of the narrowing.
bassamakasheh 3 years ago
my daughter's cardiologist said she needs to take antibiotics before going to the dentist to prevent endocarditis. is this for the rest of her life? how careful do we need to be to prevent this infection? she's always chewing on dirty toys and putting her dirty hands in her mouth. can those acts cause endocarditis?
gradius55 3 years ago
Endocarditis occurs when bacteria get into the blood stream and affect a cardiac defect like a VSD or an abnormal heart valve. following repair of Tetralogy the patch used for the VSD will be fully covered by the baby's endothelium and cannot be ifected unless there is still a small leak. prophylaxis with antibiotics should continue until the leak has closed completely. Dirty hands and toys will not cause endocarditis, however any infected cut or scrape should be treated.
bassamakasheh 3 years ago
she had a follow up echo in march, six months after her repair of Tetralogy. they could not find the patch leak but could hear it. her cardiologist is not concerned at all. how much longer till the leak closes on it's own?
gradius55 3 years ago
If it could not be seen on echo it's most probably closed, following this kind of surgery it is not uncommon to hear a systolic murmur from the RV outflow and this is not important at all.
bassamakasheh 3 years ago
Wow. This video is wonderful. Thank you for posting it. My daughter has TOF without the overriding aorta. She had surgery in July at 9 months old, and is doing well now. Little to no leakage from the VSD and moderate backflow from the pulmonary valve. The cardiologist says she may need another surgery in 15-20 years to replace the pulmonary valve.
ashleyfazel 3 years ago
Nowadays the pulmonary valve is replaced without open surgery, it's called a stented valve and is delivered into place in the cath Lab. So that's good news and I'm sure the future will bring even simpler and better technology.
bassamakasheh 3 years ago
im now 18 beautiful and healthy! ive overcame this surgery when i was 8 months old, i am so proud to watch this video : ) thank you!
7930783 3 years ago
My daughter has had this surgery - aged 6 - but still has a problem with narrow arteries. Have you come across this problem?
ovrevagen 3 years ago
Yes, some patients have small PA's, however following surgery the outflow of the right ventricle is unobstructed and over time the pulmonary arteries WILL grow to an adequate size. If she is left with localized narrow areas, they can be dilated and stented later and this is a simple procedure. Ask your Ped. cariologist. I wish your daughter all the best.
bassamakasheh 3 years ago
put new tappets in it it beats lol
somersetman 3 years ago
Comment removed
grenouil1970 3 years ago
the equipments used seem rusty...???
DeAtHAkZ 4 years ago
why are they having surgery?
XalaurabkX 4 years ago
omg... i suddenly felt a great urge to pour absolute alcohol
giansantiago 4 years ago
Forget Absolute alcohol, A large Brandy and a cigar will make you feel much better.
bassamakasheh 4 years ago
lol thats too brutal
giansantiago 4 years ago
OMG i think im gonna be sick *puke*
puppylove166 4 years ago
If you do, rinse your mouth quickly and gargle with Listerin. This will take away the bad taste.
bassamakasheh 4 years ago
bactidol or astring'o sol will do too
aikeelicious 4 years ago
my 7 month old had this surgery at 4 months. how long does the patch last? she has a tiny leak at the bottom end of the gortex patch. her cardiologist said it usually closes up on its own from the formation of scar tissue. we go back in 3 months to check on the leak. i hope it closes. i don't want another operation. is there a good chance it will close on its own?
gradius55 4 years ago
A small %age of patients have what is called residual suture leak in the VSD goretex patch, these are hemodynamically insignificant and usually close spontaneously.
bassamakasheh 4 years ago
Thanks for your reply back. Excellent.
Kommited 4 years ago
Dr. post surgery is there alot of scarring of the conduction system? Are these operations likely to cause ectopies? Will this child most likely need to be on amio or dig, or possibly a pacer. Is the ef back to normal? By the way, well orchestrated suturing on the heart. Truly a work of art. I recently had a patient in his 40's with correction of TOF.
Kommited 4 years ago
The A-V conduction bundle in these babies runs close to the lower edge of the Ventricular septal defect, if the suture line is too close to the bundle complete heart block may occur and the baby will need a pacemaker. I tetralogy of Fallot this is very rare however, (2-3%).
bassamakasheh 4 years ago
As these children grow older, typically 15 years post operatively, the dilatation of the RV and RA resulting from pulmonary incompetance will lead to rhythm problems that need to be treated + pulm valve replacement.
bassamakasheh 4 years ago
i also was diagnosed with TOF, i recently had a stent valve replacement in april 07 and am doing fine... i had the operation at the royal brompton in london
s0015 4 years ago
My nephew was recently daignosed with TOF.. watching ur video has really helped me understand the proceedure alot.. i have been reading up on TOF and how it can be corrected. thank you..
The unfortunate part is that In my country we do not have the resources to perform such a surgery and i am currently trying to find a DR or Organisation that would help do the surgery on my nephew.. thank you
Evaajaline 4 years ago
mines a bit different to that, I have pulmanery artresia too and I've been told by drs that if I have it corrected I may only have 5 yrs left. Thankyou for the advice though and the video because it did make me understand it a little bit more.
Linzalot 4 years ago
I have this condition but never got it corrected cos it wasnt the thing to do 25 yrs ago. This has helped me understand a bit more so thankyou :)
Linzalot 4 years ago
Thanks for your comment. I was in the US 25 yrs ago and these oerations were being done at the time, as a matter of fact I have operated on patients that have since graduated university. The oldest patient I have operated with Tetralogy was 49 yrs old. Please see a cardiologist and have the condition assessed now. If the condition is untreated quite serious complications may arise, hopefully not, but nowadays this is simple surgery with excellent results. Good Luck.
bassamakasheh 4 years ago