Third surgery.. Mid twenties

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extraordinary

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Hello,
I'm a 24 years old female with a CHT, I'm gonna need my valve replaced very soon and this would be my third surgery the first and second was to repair and fix it but this time it would be to replace the valve and I'm planning to go with is the mechanical valve
who've done a third OHS and how was it ? I'm over thinking it and kinda afraid …
what's the risks ? and the percentage for a successful 3rd OHS ?
what would be the best hospital and surgeon
and thanks
 

Guyswell

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As I understand it, the main challenge with additional surgeries is scar tissue from the previous surgery. I wouldn't expect the third surgery to be any riskier than the second one. Pick a surgeon and hospital with plenty of experience with re-operations. Since you're young, I expect the odds of success are very, very high. Relax and start looking around for a surgeon you're comfortable with. The american actor Robby Benson has been through four successful open heart surgeries and is doing fine. He has written a book about his experiences that you might enjoy. Here's a link to his website. http://www.robbybenson.com/biography/
 

pellicle

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Hi

I'm a 24 years old female with a CHT, I'm gonna need my valve replaced very soon and this would be my third surgery the first and second was to repair and fix it but this time it would be to replace the valve and I'm planning to go with is the mechanical valve
who've done a third OHS and how was it ?
I've had 3 OHS, 9yo (repair), 28yo (homograft) and last one at 48yo (ATS mechanical and an aortic graft).

Were your other OHS on the same site? My valve operation was my Aortic, I confess that I do not know what CHT is and google gave me no help, what is it please?

It is true that risks increase with multiple surgeries (anyone that says otherwise is lying or ignorant). However the risks can be dealt with. I had an open sternum operation each time and my surgeon was quite clear to me that no one will want to do a fourth as the risks increase in a non linear manner after 2.

The scaring makes it very difficult to know exactly where things are (and if you've ever done dissections or "cleaned and gutted animals" you'd know exactly what I'm talking about). However they do have access to much better "medical imaging" these days and so take more time and effort in planning which will minimise the risks.

Percentages of successful are favorable but its not just the risk of death, its the risk of other injury (such as to a nerve) during surgery which may leave you with other issues (such as needing a pacemaker, atrial fib ...). So it is important to find a surgeon who has experience with redo operations and is generally more experienced.

I made it through mine but recovery was slower this time (perhaps due to me being 48 not 28) and I got an infection from the surgery which was a low grade bacteria not anything really nasty. I'm still on antibiotics and my surgery was late Nov 2011.

I think that you choosing a mechanical valve is a very good idea, especially because at 24 you will NOT get the "whizzo" lifespans (best case) claimed by the makers of tissue valves. A 4th surgery is definately to be avoided (well as is ALL surgery) if it can be helped.

I don't think you need to panic however as despite the risks (and I refuse to pretend to you that there are none or fewer) I believe that there is much more experience and better tools to assist and guide the surgeons today.

The point of choosing a surgeon with more experience in redo operations is that like anything, more experience helps them to know what to look for in preparation and also how to deal with anything as it occurs on the table and they have to make quick decisions.

Ask your surgeon about how much experience they have in redo operations and if they feel comfortable with it. If you don't like their answers seek a referral to another surgeon and keep doing that till you feel comfortable with the surgeon.

I had my operation done back in Australia and I was very comfortable with my surgeon.
 

Lynlw

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Hello,
I'm a 24 years old female with a CHT, I'm gonna need my valve replaced very soon and this would be my third surgery the first and second was to repair and fix it but this time it would be to replace the valve and I'm planning to go with is the mechanical valve
who've done a third OHS and how was it ? I'm over thinking it and kinda afraid …
what's the risks ? and the percentage for a successful 3rd OHS ?
what would be the best hospital and surgeon
and thanks
Hi, My son has had 5 OHS and a few other heart related surgeries, his 3rd was when he was 10 and 5th when 19 he is now 25 so I spoke with quite a few surgeons about the risks etc, especially since we knew going into both his 4th and 5th OHS that his heart was fused to his sternum, (luckily for you most people who have higher risk of that and opening problems are people like Justin who have a pulmonary conduit because it is on top of the heart, right below the sternum) so would be even more riskier than the normal REDO, but we discussed stats, safest ways to open him, back up plans, stats on MULIPLE REDOS in general (In the hands of experienced surgeons who operate on multiple (over 3rd) REDOS daily if not weekly.
The surgeons and centers that have the most experience in multiple REDOS are of course the CHD and adults with CHD surgeons since thousands of children are born every year who need 3 OHS before they are in grade school. They now have over 25 years experience in the best ways to open and operate on the most complex surgeries needing 3 or more surgeries.. so even tho there IS risks, in their hands the risks of morbidity and mortality is about the same for 3rd and 4h OHS as first. REDOs ARE tougher for the surgeons, but for the most part IF they run into a problem they know with out stopping to think the best way to proceed both in the OR and during recovery. Justin had a few bigger problems post op, but even from the 2nd surgery in 89 to the third in 98 I saw so much better outcomes and problems that were common in the 80s, like the bad pericardial fluid Justin was in and out of the hospital for 6 months after his 2nd surgery, was treated much quicker then. Things got even better by his surgery in 2005. After he recovered even when he had complications, things are great. OF Course there is always a risk to any surgery and there will always be people who don't survive or have life long complications, luckily the chances are VERY good for a full recovery.
There are quite a few articles/ studies like this one http://www.ncbi.nlm.nih.gov/pubmed/18721579 Repeat sternotomy in congenital heart surgery: no longer a risk factor.
Morales DL, Zafar F, Arrington KA, Gonzalez SM, McKenzie ED, Heinle JS, Fraser CD Jr.

I know you live in Kuwait but had your baby in Boston I believe, where are you considering having your valve replacement? Who /where did you have your first 2 surgeries? IS that surgeon still operating? I think it is always good to have the surgeon who did earlier surgeries so knows exactly what they did do the next IF possible. BUT as long as you go to a surgeon who specializes in CHD and adults with CHD (for the most part they are in Childrens Hospitals) the chances of not only surviving but having a complete recovery and thriving are very very good.
The top Hospitals in the US (and maybe the world?) for Congenital Heart defect surgery are Boston Children hosp and CHOP (Childrens philly) There are a few other very good CHD centers in the US, but Boston and CHOP usually rank 1 and 2. Not only do the surgeons operate on Children and young adults having 3rd or more OHS a few times a week but the dedicated staff know what to watch for and how to take care of any post op problems. When Justin needed his 4th OHS we went to both centers and the surgeons had no doubts he would have a full recovery and altho Im sure they would prefer not to have to operate on a chest that has been opened multiple times, they pretty much said they would just go slow and careful opening him and removing his older conduit (graft) as well as other things like possibly putting him on the heart lung machine before they had his chest fully open since they knew his heart was fused to his sternum. None of them said they wouldnt operate or the risks were too high etc. We eventually chose CHOP over Boston mainly because it was 20 min from home and Boston was 5 hours. Since Justin had a history of running into problems after he was home, we felt better being closer to the surgeon and staff who operated and took care of him if he had to go back.
Here is a link to one of the well respected rankings of hospitals , this is for CHD http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery FWIW the top ranking for aduls heart hospitals is different, even tho 'adult" heart hospials do many AVRs and repeat AVRs, for the most part they are not the surgeons who have the MOST experience w/ people having multiple REDOs.

I'm sorry I dont know which hospitals or surgeons in other parts of the world have the most experience w/ Congenital heart patients. Are you being seen by a cardiologist that specialises in Adults w/ CHD? If so they would probably be able to reccommend the best centers. Also beside the forums here you might want to look into the ones at the Adults with CHD org http://www.achaheart.org/ Quite a few members there have had multiple REDOs there is also an org in the UK that has a good forum I dont know the link off he top of my head but I believe it is GUCH or growing up w/ chd, they could let you know more about hospitals there.

I understand why you would choose a mech valve for your 3rd heart surgery at your age, the one thing I would consider is if you plan on or want any more children. Even tho it IS possible to get pregnant and carry a healthy baby w/ a mechanical valve and coumadin, or other anticoagulants, it usually is recommended to get a tissue valve if you plan on having more children, since it IS a higher risk pregnancy with risks to both the mother and baby. YES if you did choose a tissue valve it will need replaced. and at your age the chances of it lasting 15-20 years is probably close to 0. Even tho there are pretty good chances when you did need that valve replaced, in probably 10 or so years, since it would be your 4th OHS, you most likely would be a candidate to have it replaced by cath, since they are succesfully doing them on high risk patients right now. You still are signing up for at least 1 more OHS and the risks that go along with that. On the other hand, you most likely would have another 10 plus years w/ out Coumadin or other anticoagulant and the risks that DO go along with that.. even today with the best valves and home testing there still ARE risks of clots and bleeds.

Saying all that, since this will be your third surgery and you are in your 20s, unless you do plan on having more children almost everyone would reccomend getting a mechanical valve now. I just wanted to bring up children incase it is something you have to think about

I forgot to answer in Justin's case as far as time in the hospital post op and complications his 3rd and 4th were the best, he was home 5 days or less for his last 3 and didn't have any post op complications for his 3rd and 4th surgery. His 5th he was also home in 4-5 days post op but was readmitted 10 days post op for an infection, which could have happened after any surgery.
Good Luck with everything and take this time to enjoy being a new mom.
 
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pellicle

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Hi, My son has had 5 OHS and a few other heart related surgeries, his 3rd was when he was 10 and 5th when 19 he is now 25
thanks for this very useful and informative post.

I am always impressed in reading between the lines of lengthy posts like this to see how much mothers have to go through and what a determined mother can do. For I was 5 when I was first diagnosed and had my first surgery at 9 (there were two less extensive surgeries, but they were not without risk).

As a child one doesn't really understand what mothers go through. As an adult I look back on my mothers dedication with new eyes. Even thought my mother has passed away I still acknowledge and respect what she did for me. Your post helps me to further consolidate that knowledge

thank you
 

neil

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very informative post lyn as usual very good reading,
 

Debbrn

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I have had 4 heart surgeries. I was age 6 weeks, 6, 25, 44 years of age. Each surgery has been easier then the last. My cardiologist could not believe how well I was doing after the last surgery. Lynn definitely knows what she is talking about. I have nothing to add to the others advice.
 

Lynlw

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thanks for this very useful and informative post.

I am always impressed in reading between the lines of lengthy posts like this to see how much mothers have to go through and what a determined mother can do. For I was 5 when I was first diagnosed and had my first surgery at 9 (there were two less extensive surgeries, but they were not without risk).

As a child one doesn't really understand what mothers go through. As an adult I look back on my mothers dedication with new eyes. Even thought my mother has passed away I still acknowledge and respect what she did for me. Your post helps me to further consolidate that knowledge

thank you
Thank you. Yes Justin really kept us busy the first 2 years especially. he turned blue the day after he was born while feeding, so we had to pick a hosp to transfer him to and he had his firs heart surgery at 10 days, then when the finally got off the vent and could use a bottle, he had horrible projectile vomiting so back to the OR at 17 days for pyloric stenoses surgery (where food leaves the stomach was too small) I told him then that he needed to find a new hobby. I'm sure like every other parent whose baby or child, no matter what age they are, I would have given anything to be the one going thru everything and not Justin. I think the hardest part emotionally is parents want to be able to "fix' everything and make it better, but so much is out of our hands and you can feel very powerless. I decided early on, the one thing i COULD do was learn as much about HIS heart and hearts in general and keep up on advances and who is doing what where, so that I could really talk to the doctors and understand what they are saying so we could make the best choices when we had to make them, especially quickly when there wouldnt be time to research the different choices, since he tended to run into things that if they weren't ER we needed answers in the next hour, he did unexpectedly need intervention, caths or surgery the next day a couple times. That is one thing that really got easier in the last 25 years, In the beginning I had o read medical books, talk to different doctors etc, since there werent computers, heck or even cell phones. So finding really good understandable information online was wonderful and then online forums and being able to talk to parents or patients from all over and not just who we met walking the halls in the hospital really made things so much better. Te only "problem" is I can be kind of obsessive like watching hours of webcasts from the different doctors conferences into the middle of the night since I figure that is where many of the doctors hear what is happening from the doctors actually involved in the work, its a great way to keep up to date w/ how things are going.
Sorry to get off track there. But Thank you again, its nice to hear writing about our experience might help other adults realise how wonderful THEIR parent were /are. One thing I always thought was interesting, is Justin tends to run into problems and things that rarely happen, usually happened to him. I often thought, but would never tell him, the poor kid was "unlucky" But he has a much better attitude than me and thinks the fact he had BE (from losing a baby tooth, rarely happen) and infections and lots of surgeries and caths and weird complication BUT is doing great, has always been active and doesn't take any meds means he is very lucky.


ps i'm curious were your 2 less extensive surgeries heart related?
 

pellicle

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Yes, heart related. Very early and clumsy procedures when compared to what replaced them: angiograms. One through the armpit another through the inner elbow. I am told some patients lost arms that way.
 

Lynlw

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Yes, heart related. Very early and clumsy procedures when compared to what replaced them: angiograms. One through the armpit another through the inner elbow. I am told some patients lost arms that way.
Oh ok yes Justin has had alot of caths , maybe not alot but I lost count pretty early (which I felt bad about). Some were "just" looking around measuring, but he had a few interventional ones where they opened holes or tried to balloon open arteries and even was able to put off another surgery a few years (giving time to grow more) w/ stents and ballooning the stents open a couple time. Luckily for him, by the time he was born (88)they used much smaller needles and catheters so he entry holes were much smaller, but the first few years he was allergic to the angiogram dye, so I used to get more nervous w/ caths than the surgeries, he was about 10 when they had a different dye that he didnt react to so he didnt have to get of steroids and other meds before and after the cath to prevent the worse reactions. His were all thru his groin area
 

extraordinary

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Hi, My son has had 5 OHS and a few other heart related surgeries, his 3rd was when he was 10 and 5th when 19 he is now 25 so I spoke with quite a few surgeons about the risks etc, especially since we knew going into both his 4th and 5th OHS that his heart was fused to his sternum, (luckily for you most people who have higher risk of that and opening problems are people like Justin who have a pulmonary conduit because it is on top of the heart, right below the sternum) so would be even more riskier than the normal REDO, but we discussed stats, safest ways to open him, back up plans, stats on MULIPLE REDOS in general (In the hands of experienced surgeons who operate on multiple (over 3rd) REDOS daily if not weekly.
The surgeons and centers that have the most experience in multiple REDOS are of course the CHD and adults with CHD surgeons since thousands of children are born every year who need 3 OHS before they are in grade school. They now have over 25 years experience in the best ways to open and operate on the most complex surgeries needing 3 or more surgeries.. so even tho there IS risks, in their hands the risks of morbidity and mortality is about the same for 3rd and 4h OHS as first. REDOs ARE tougher for the surgeons, but for the most part IF they run into a problem they know with out stopping to think the best way to proceed both in the OR and during recovery. Justin had a few bigger problems post op, but even from the 2nd surgery in 89 to the third in 98 I saw so much better outcomes and problems that were common in the 80s, like the bad pericardial fluid Justin was in and out of the hospital for 6 months after his 2nd surgery, was treated much quicker then. Things got even better by his surgery in 2005. After he recovered even when he had complications, things are great. OF Course there is always a risk to any surgery and there will always be people who don't survive or have life long complications, luckily the chances are VERY good for a full recovery.
There are quite a few articles/ studies like this one http://www.ncbi.nlm.nih.gov/pubmed/18721579 Repeat sternotomy in congenital heart surgery: no longer a risk factor.
Morales DL, Zafar F, Arrington KA, Gonzalez SM, McKenzie ED, Heinle JS, Fraser CD Jr.

I know you live in Kuwait but had your baby in Boston I believe, where are you considering having your valve replacement? Who /where did you have your first 2 surgeries? IS that surgeon still operating? I think it is always good to have the surgeon who did earlier surgeries so knows exactly what they did do the next IF possible. BUT as long as you go to a surgeon who specializes in CHD and adults with CHD (for the most part they are in Childrens Hospitals) the chances of not only surviving but having a complete recovery and thriving are very very good.
The top Hospitals in the US (and maybe the world?) for Congenital Heart defect surgery are Boston Children hosp and CHOP (Childrens philly) There are a few other very good CHD centers in the US, but Boston and CHOP usually rank 1 and 2. Not only do the surgeons operate on Children and young adults having 3rd or more OHS a few times a week but the dedicated staff know what to watch for and how to take care of any post op problems. When Justin needed his 4th OHS we went to both centers and the surgeons had no doubts he would have a full recovery and altho Im sure they would prefer not to have to operate on a chest that has been opened multiple times, they pretty much said they would just go slow and careful opening him and removing his older conduit (graft) as well as other things like possibly putting him on the heart lung machine before they had his chest fully open since they knew his heart was fused to his sternum. None of them said they wouldnt operate or the risks were too high etc. We eventually chose CHOP over Boston mainly because it was 20 min from home and Boston was 5 hours. Since Justin had a history of running into problems after he was home, we felt better being closer to the surgeon and staff who operated and took care of him if he had to go back.
Here is a link to one of the well respected rankings of hospitals , this is for CHD http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery FWIW the top ranking for aduls heart hospitals is different, even tho 'adult" heart hospials do many AVRs and repeat AVRs, for the most part they are not the surgeons who have the MOST experience w/ people having multiple REDOs.

I'm sorry I dont know which hospitals or surgeons in other parts of the world have the most experience w/ Congenital heart patients. Are you being seen by a cardiologist that specialises in Adults w/ CHD? If so they would probably be able to reccommend the best centers. Also beside the forums here you might want to look into the ones at the Adults with CHD org http://www.achaheart.org/ Quite a few members there have had multiple REDOs there is also an org in the UK that has a good forum I dont know the link off he top of my head but I believe it is GUCH or growing up w/ chd, they could let you know more about hospitals there.

I understand why you would choose a mech valve for your 3rd heart surgery at your age, the one thing I would consider is if you plan on or want any more children. Even tho it IS possible to get pregnant and carry a healthy baby w/ a mechanical valve and coumadin, or other anticoagulants, it usually is recommended to get a tissue valve if you plan on having more children, since it IS a higher risk pregnancy with risks to both the mother and baby. YES if you did choose a tissue valve it will need replaced. and at your age the chances of it lasting 15-20 years is probably close to 0. Even tho there are pretty good chances when you did need that valve replaced, in probably 10 or so years, since it would be your 4th OHS, you most likely would be a candidate to have it replaced by cath, since they are succesfully doing them on high risk patients right now. You still are signing up for at least 1 more OHS and the risks that go along with that. On the other hand, you most likely would have another 10 plus years w/ out Coumadin or other anticoagulant and the risks that DO go along with that.. even today with the best valves and home testing there still ARE risks of clots and bleeds.

Saying all that, since this will be your third surgery and you are in your 20s, unless you do plan on having more children almost everyone would reccomend getting a mechanical valve now. I just wanted to bring up children incase it is something you have to think about

I forgot to answer in Justin's case as far as time in the hospital post op and complications his 3rd and 4th were the best, he was home 5 days or less for his last 3 and didn't have any post op complications for his 3rd and 4th surgery. His 5th he was also home in 4-5 days post op but was readmitted 10 days post op for an infection, which could have happened after any surgery.
Good Luck with everything and take this time to enjoy being a new mom.


Hello
thanks a lot for your reply, I'm flying the US again on 24th of this month for the OPS in Cleveland, Ohio as it is ranked #1 in heart, and also cause if had my second surgery also in cleveland clinic but unfortunately the Dr. who operated on me has passed away …

your reply is very comforting, but I'm still stressing as I'll travel and leave my baby home ( because very body advanced me and told me it's not a good idea to take him with me ) as in any ways i wouldn't be able to take care of him ..

what you think about the Cleveland clinic is it the best choice ? and your son did he had a mechanical valve ?
 

Lynlw

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Hello
thanks a lot for your reply, I'm flying the US again on 24th of this month for the OPS in Cleveland, Ohio as it is ranked #1 in heart, and also cause if had my second surgery also in cleveland clinic but unfortunately the Dr. who operated on me has passed away …

your reply is very comforting, but I'm still stressing as I'll travel and leave my baby home ( because very body advanced me and told me it's not a good idea to take him with me ) as in any ways i wouldn't be able to take care of him ..

what you think about the Cleveland clinic is it the best choice ? and your son did he had a mechanical valve ?
Yes, I imagine youll miss your baby, but he probably will be much happier at home since you wouldnt be able to take care of him. and it would be alot of traveling which would be hard on both of you. Justin has a Bovine (tissue cow) because his is his pulmonary valve and most everyone recommends tissue for the right side of he heart. Luckily it is pretty common already to have the pulm replaced by Cath,(Melody valve approved several years now in US) so hopefully he'll have that next time instead of another open heart. CCF is very good for adults, and since you are having your Aorta valve they have alot of experience with that, Aortic valves and Aorta and REDO for them.
but for other CHDs, in MY own personal opinion I wouldnt go there as a first or 2nd choice, They arent ranked that well for the complex CHD surgeries http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery
Good luck wih everything will you have some one travelling wih you?
I know when Dr Mee was on staff they were very good with some of the complex CHDs , but I personally never had any experience with them
 
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Debbrn

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Good luck with your surgery. I also had a tissue valve because it was the pulmonary valve. I also hope that the next time it can be done in the cath lab. I don't want to take my chances with surgery number 5 being later in life.
 

pellicle

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Hi

that's very comforting to hear, where have you done your third surgery ?
I'm not sure if this was directed at me (because I've had three surgeries) ... if so my surgeries were all at the same location in Brisbane, Australia. The hospital has been called by various names, but Holy Spirit Northside is the current name. My first two were by Drs O'Brien and Stafford, but they have since retired and it turns out that the Dr who did my last surgery was a member of their 'team' his name is Jalali.

Best Wishes
 
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extraordinary

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Yes, I imagine youll miss your baby, but he probably will be much happier at home since you wouldnt be able to take care of him. and it would be alot of traveling which would be hard on both of you. Justin has a Bovine (tissue cow) because his is his pulmonary valve and most everyone reccomends tissue for the right side of he heart. Luckily it is pretty common already to have the pulm replaced b Cath, so hopefully he'll have that next time instead of another open heart. CCF is very good for aduls, and since you are having your Aorta valve they have alot of experience with that, Aortic valves and Aora and REDO for them.
but for other CHD, in MY own personal opinion I wouldnt go there as a first or 2nd choice, They arent ranked tha well for the complex CHD surgeries http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery
Good luck wih everything will you have some one travelling wih you?
I know when Dr Mee was on staff they were very good with some of the complex CHDs , but I personaly never had any experience with them
yes but when i looked up the adults heart hospitals it turned out cleveland clinic ranked #1
and yes I'm having my aortic valve replaced and you mentioned that they are experienced in that so am i going to right place ?
you are right Dr. Roger, Mee was the one who operated on me when i was 9 years old but is i told you he passed away

and when i was in boston delivering the baby the heart doctor who saw me was in Brigham & women's hospital not children's hospital since I'm an adult..
 

clay_from_nj

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thanks for this very useful and informative post.

I am always impressed in reading between the lines of lengthy posts like this to see how much mothers have to go through and what a determined mother can do. For I was 5 when I was first diagnosed and had my first surgery at 9 (there were two less extensive surgeries, but they were not without risk).

As a child one doesn't really understand what mothers go through. As an adult I look back on my mothers dedication with new eyes. Even thought my mother has passed away I still acknowledge and respect what she did for me. Your post helps me to further consolidate that knowledge

thank you
One of my doctors once told me that in some of the earliest child OHSs, the mother was the heart-lung machine.
 

Debbrn

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The first OHS was done in Baltimore and the father was the heart/lung machine for the child. It was called cross-circulation.
 
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