Mechanical or Valve Sparing for kids

[Cindy]

Hi, Two of my kids will need valve replacment surgery in June. They have Aortic Anurysms. The doctor thinks they may be candidates for valve sparing. Will know after TEE. I really like alot about the valve sparing . But the life of the valve is a big issue. I heard only last about 5 years? Is that true? My kids ar 16 and 21. That would be alot of surgeries in a lifetime. We go to a good hospital University of Michigan. I would like opnions on valve sparing and mechanical. Pros and cons, please. I want to do all my homework before surgery.
Thanks,
Cindy

 

[Turkey Hunter]

Hi Cindy and Welcome.

Choosing a valve, or in your case valves, is a very personal choice.
Your two children need to be comfortable with the choice they are going to go with. No one can really help them with that. Especially the older of the two.
Now, the surgeon will tell you that even after all of the tests they are doing; they will not know exactly what can be done with valve sparing until they are actually inside and physically looking at the valves and aneurysm's.
Hopefull, there is no damage to the valves & all you will have to deal with is repair of the dialated area.

I would be interested in hearing more specifics on your children's case's.
i.e Do either of the have bicuspid aortic valves?
Have either of them been diagnosed with a connective tissue dissorder?

God Bless & again, welcome

Ben

 

[Karlynn]

Welcome Cindy. I'm glad you found us. What a difficult issue this is. Having 2 children, both in need of valve surgery has to be very stressful. We have several "heart Moms" here that I'm sure will be along to post as well.

Ben asked for more information because there are a lot of factors that could make the decision lean one way or the other. There's propensity of scarring, or "spongy" heart tissue that makes repair of a valve difficult and unstable.

Do you or the kids' father have any family history of this issue they are dealing with.

The decision is legally the 21 year-old's to make, but I know Mom will have a lot of sway in it. Even though the 16 year-old's valve decision is yours to make, I would encourage you to have him/her be a part of it and be educated on the specifics. If the heart issue is part of a larger disability, such as Downs Syndrom, then you obviously know the extent of which would be helpful for them to be involved.

Once again, I'm glad you found us. You'll get a lot of support and information here. If either of your children have any questions or concerns, I encourage them to join and post too.

 

[Lynlw]

Hi Cindy, My son is 18 and also the one with heart issues. and sorry like the others I have more questions than answers for you right now. Are your kids male or female?the reason I ask is because if they get a mech valve chances are they will be advised not to get pregnant, so IF they chose to have a valve replacemnt, you/they might want to consider tissue which won't last as long as a mechanical but probably won't need any meds . also I'm not sure what you meant about the valve lasting 5 years if there is nothing wrong w/ their valves, they should last a long time and a mechanical also last very long. a tissue probably would last at least 10 years especially the newer ones.
are your kids at least the 21 year old being seen but an adult chd specalist? or a ped card? I would recomend one if they don't since they think aout alot of the issues that go along w/ the heart issue. alot of the factors that a child normallly would have to consider is out growing the vlves, so luckily that shouldn't be an issue here.
IF it was me, and there were no good reasons to replace the valves, I think I would try to keep them, but maybe the other info you can give wold make decisions a little easier, Good Luck, I know it is tough, have your kids been followed their whole lives or is this all new? we found out about Justin's heart defects when he was a day old, and last year he had his 4th OHS and lots of interventions, so even if your kids would need more than one surgery thruought their lives, it stinks, but there are many people who have done it , and live good lives, lyn

ps I would strongly recomend checking out the forums at the adult chd site www.achaheart.org there are many members in their 20s and older

 

[Mike C]

I would suggest the philosphy of keeping their orignal valves as long as possible, they will avoid coumadin and ticking. Valve sparing procedures are becoming more popular. I also subscribe to the philosphy of minmizing ohs surgeries, so it depends on how long docs beleive they can get out of the valves. it needs to be a significant amount of time.

if they choose valve sparing, they must have a backup plan and communicate clearly to the surgeon.

My plan was valve sparing, with backup of st jude. I woke up ticking. Although every test showed valve to be fine and only reason to go in was aneurysm, they couldnt tell how thin vavle was until they saw it and went with backup plan.

 

[Tom F.]

I am not sure where you heard that a valve sparing procedure only lasts 5 years, that is just not true. In a valve sparing procedure you keep your own valve, but it is suspended within the replacement for the aorta. It is your own valve. Dr. Tyronne David developed this procedure. In adults thus far it shows good intermediate results, but I have not seen anything about children. My advice is to search out Dr David or someone else with a lot of experience with this procedure, and see what they have to sa.

 

[PJmomrunner]

Cindy:

I'm sorry you find yourself in this situation. While I can only imagine how difficult it must be to contemplate what the best way for one's childrens' hearts/aortas to be fixed, I also recognize how truly fortunate we are to live in a place and time where those fixes can be implemented with great success.

I have looked into valve sparing possibilities some for myself and think it's a very attractive option for someone whose valve functions well. The procedure was, I believe, first performed around 1990, so there are no super-long-term studies, but the ten year studies look really good (something like 90-95% still working well). It is possible it could be a lifelong fix. I would want to know if the valve sparing operation eliminates the possibility of subvalvular scar tissue formation.

I would suspect it at least greatly diminishes it as the valve is left in place while the aortic graft is brought down to just below the annulus (the circle of tissue where the valve leaflets attach to the aorta/heart) and attached--the valve is not excised (cut out). I think this is significant, because IF a re-do operation became necessary it would essentially be a first operation on the valve. The way my U of Michigan surgeon put it was, "The first operation is to replace the native valve, the second is a re-do, the third is a do-do, and the fourth is a don't-do." Of course the cracking of the chest and all that is entailed in the open heart nature of the surgery is very significant, but re-removing and re-replacing valves is the stickiest part of the business. By doing the valve sparing you avoid the replacement and the life-long anticoagulation that comes with a mechanical valve. (We're talking 70+ years) Of course the idea that the valve sparing has better implications in the case of a future re-do is speculation on my part (and what makes me interested for myself) and the possibility of a life long fix with the valve sparing procedure is thus far only speculation also, but at least ten years is demonstrated to be highly likely for a good candidate. (see links below)

Who is (are) the surgeon(s)? What do they recommend? Did they say a valve sparing would only last 5 years? Why? Is/are the valve(s) not in good working order? Are they bicuspid (BAV) or tricuspid (TAV, which is structurally normal)?

Gosh, you've got a lot to take in. Good luck. Lean on us. We can help and we want to.


http://www.ctsnet.org/sections/clinicalresources/adultcardiac/expert_tech-18.html

http://www.ncbi.nlm.nih.gov/entrez/..._uids=16872961&query_hl=3&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/..._uids=16928499&query_hl=3&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

 

[Turkey Hunter]

I am not sure where you heard that a valve sparing procedure only lasts 5 years, that is just not true. In a valve sparing procedure you keep your own valve, but it is suspended within the replacement for the aorta. It is your own valve. Dr. Tyronne David developed this procedure. In adults thus far it shows good intermediate results, but I have not seen anything about children. My advice is to search out Dr David or someone else with a lot of experience with this procedure, and see what they have to sa.

I think we should be very carefull to make blanket statements. I agree that it would not be the best circumstance to have a OHS repair/replacement last only five years; but anything is in the realm of possibilities.
Look at me; 6.5 years post op and my valves are great. It is other problems having me look to face a second OHS.
With that being said, I do agree that the David procedure has a great history at this point.

I also recognize how truly fortunate we are to live in a place and time where those fixes can be implemented with great success.

This is something we all must keep our mind on. It wasn't that many years ago that we would have no options; Just to wait.

 

[briansmom]

In a similar boat

In a similar boat

Please keep posting. My 16 yr old also had an aortic aneurysm. However, we were told repeatedly that there was nothing wrong with his heart, because "16 yr olds do not have heart trouble". Unfortunately, it ended up destroying his aortic valve and causing a massive heart attack before the doctors figured it out. He has an LVAD now, but will be getting it out in March and they will be putting in a on-x valve then.
Please let us know what has caused the aneurysms, if you know.

Also as I'm sure that all the moms on the site can tell you. This mostly sucks!! However, it has changed my outlook in some positive ways also. Every day is a gift, I see that now. All the stuff that I used to worry about was actually pretty unimportant - I see that now also. Miracles do happen - my son is living proof.

I do not know the activity levels of your children, but the hardest thing my son faced was not being able to ride his off-road motorcycle any more. He had 2 OHS and he says that he would have multiple more surgeries if that meant that he would not have to be anti-coagulated and could ride again. Unfortunately, he is still in puberty and tissue valves are not a good option for him. Bottom line, my opinion is keep their own valves as long as possible. There are so many medical advances that are coming, that you may have some other really good choices if their valves fail at a later date.

We'll hang in there together.

 

[Turkey Hunter]

Ben Smith, I can't really tell, from what you wrote above, what your objection was to the part of Tom F.'s post that you quoted. Perhaps you can clarify what you took issue with.

I have no objection to Tom's statement of what the David procedure has shown in its historical results. I took no issue with anything stated other than what one may interpret when they read it.
My only point was we should never make a blanket statement leading anyone to believe that "something will never go wrong in five years". I know that is not what he said or even what he meant; however this is still communication in the written form with no tones of voice to be heard or facial expression to be seen to help us understand exactly what was said. I was just trying to clarify a bit.
Just my quirky personality I guess.

Every valve choice each one of make, is the right choice; at least for us at that point in our lives. We first want to be comfortable oursleves with our decision.

Sorry for the "miss-clarification" on my part.

Who is (are) the surgeon(s)? What do they recommend? Did they say a valve sparing would only last 5 years? Why? Is/are the valve(s) not in good working order? Are they bicuspid (BAV) or tricuspid (TAV, which is structurally normal)?

Cindy, the more information you have the better answers you can get from the medical community and some here.
We are here to help.


Ben

 

[Cindy]

Kids surgery

Kids surgery

Hi everyone. Thanks for all the responses. I was emailed info about a year ago from a man who had valve sparing. He said Tirone David has improved on this surgery. Each improvement lasted longer. He said right now it is the David V . He acted like as of now it was only guraranteed for 5 years. I guess I was mistaken. I think valve sparing is the way to go if it will last approx 20 years. My kids do have a connective tissue disorder. They do not call it Marfan because they do not carry 5 characteristics. You have to carry 5 to be diagonssed with Marfan.My kids father died of a dissection 12 years ago. He did not know he had anything wrong. He died suddenly. My kids were checked and all three have it. Two need surgery now. The Doctor said with a connective tissue disorder, another problem is they may develop more anurysms. It is such a big decision. My 21 yer old wants to make the ultimate decision. I will allow my 16 year old to be involved in the decision. Blood thinners for life makes me nervous. I thinking preserving your own valve has to be the best. As long as their tissue stays good.I appreciate all the support and responses.
Cindy

 

[Karlynn]

Cindy, most of the medical community makes Coumadin much scarier than it really is. Take a look at our Active Lifestyles forum and you'll see how many of our Coumadin users occupy their free time.

Give this post a read, it's just a short list of information that some of us that have taken Coumadin, for quite a while, have put together as a brief overview.

http://valvereplacement.com/forums/showthread.php?t=17116

My prayers are with you and your family. This is such a tough thing to go through. I hope you find a lot of support and assurance here with us.

 

[Cindy]

Kids surgery

Kids surgery

Hi Everyone,
My kids have beenn diagnosed with a connective tissue disorder for about 11 years. We have been going to U of M Mott Childrens Hospital. We have had the best Cardiologist for the last 11 years. She actually just went to Duke. Her husband is a Childrens Onocologist and got a promotion. Chief of staff. Our Surgeon is Dr. Deeb at the University of Michigan Hospital in Ann arbor. He knows Tirone David very well. He is an expert on Connective Tissue Disorders and Aortic Anurysms. I feel very comfortable with him. I just want to investigate both surgeries and make the right decision. I'm so happy I found this board. I will need your support while we make this big decision. I hope to help other people if I can.
Have a good night everyone.
Cindy

 

[Cindy]

Kids surgery

Kids surgery

Good Morning, I have some questions about recovery. Our doctor said about a week in the hospital. Total recovery about 3 mos. That is why we are doing in June when my son is out of school. We have colonial. I'm not sure kids will be able to climb stairs to thhe bedrooms. Should I put two beds in my Great Room? Ask anyone else had their surgery at U of M?
Thanks,
Cindy

 

[Turkey Hunter]

Good Morning, I have some questions about recovery. Our doctor said about a week in the hospital. Total recovery about 3 mos. That is why we are doing in June when my son is out of school. We have colonial. I'm not sure kids will be able to climb stairs to thhe bedrooms. Should I put two beds in my Great Room? Ask anyone else had their surgery at U of M?
Thanks,
Cindy

Sounds pretty close other than some don't "fully" recover for almost a year. Don't missunderstand me, after three months school should not be a problem.
As far a climbing stairs, everyone is different. I didn't go upstairs to my bed for a month after the surgery. I could climb them without problem, just chose to stay on tha main floor in my lazy boy.
Where is Dr. David located? He isn't at UofM now is he?
Last I heard, I thought he was in Ontario.

As far as your anti coagulation concerns, I can't really help you there; other than to say from what I read here the problems with it very. Some folks have a tough time & some don't seem to have any problems at all. You just never know how your body will react to it until you are on it.

Ben

 

[PJmomrunner]

Good Morning Cindy.

Dr. Deeb is my surgeon also...or will be when the time comes. He's monitoring my progress for now. I trust him completely. There is a veteran patient of his on VR.com, but I don't remember who and I don't think he's around much. Janet's Katie had her surgeries at Mott by Dr. Bove.

I'll leave your questions to the veterans, but I think they'll tell you there's no need to move the beds. The concensus seems to be that even in the first days one can manage the stairs but probably should limit the trips to once a day.

 

[Magic8Ball]

Good Morning, I have some questions about recovery. Our doctor said about a week in the hospital. Total recovery about 3 mos. Cindy

Well i'm a 37 yr old male and i'm, 15 days post op for a 'bentals' which is a single part mechanical aortic valve and ascending aorta, this was done under deep freeze.

I had 7 days in hospital and 7 days around my mums place and now i've been back home for two days. I'm fairly fit but not athletic in any shape or form.

Here in Australia there aren't many two storey houses but i walked down then up two flights of stairs on day 6 before they would discharge me. i don't think your kids will have many issues using the stairs as long as they are not up and down them all day...ie sleeping upstairs and then spending the day downstairs.

I felt crappy for 3 days then everything has been on the up and up, each day i felt twice as good as the previous day...the hardest thing is keeping a lid on things....you tend to feel great and then do too much but don't realise it....i again did a little too much today and feel tired, sounds like your kids will have issues keeping a lid on things also.

I'm totally gobsmacked at the decisions you have ahead, i only had myself to consider and both my kids were cleared at birth of any heart defects as i was paranoid they may have something. My patched up heart goes out to you and your kids.

Coudamin so far for me has not been an issue but then i've had 20+ years of alcohol over use and gotten it out of my system...the boys may feel differently about this but i'm not sure how much they could over induldge post surgery anyway?

For my .2c i never want to go throught this surgery again (even though it wasn't that bad really) and so chose the option that gave me the greatest chance of doing so by removing everything that was faulty....of course something else could go wrong but you can only try your best.

Best of luck with your decisions.

 

[Karlynn]

I think your boys would most likely be able to do stairs. But they will hopefully be napping a lot for a week or so when they return home (Our mantra is that the only job for at least 2 weeks after surgery is to walk, sleep, eat and breathe - all of which are more difficult than they sound.) so several trips up and down stairs may not be practical.

Many of our post-op members choose to sleep in recliners for several days. If no recliners are available, have lots of pillows to prop up and brace. Rather than putting beds on the first floor, see if you can borrow a recliner or two from friends.

Make sure they both come home from the hospital with their incentive spirometers and make them work with them several times a day for the first several days. This will help improve their breathing strength a great deal.

Are they having their surgeries done at the same time (or within a few days of each other)?

 

[Cindy]

Kids surgry

Kids surgry

Hi Everyone. What is the deep freeze? What is spirometers? Boy I feel dumb.
I'm glad someone else is seeing Dr. Deeb. I have only heard good things about him. David is in Toronto. A man emailed me about a year ago who had his surgery by David. He lived in Michigan and traveled there. He told me about Dr. Deeb. We were already seeing our Pediatric cardiologist at Mott. Then are ped doctor wanted us to gt a ct scan and talk to a surgeon. Since two kids were adults and one a child we decided to go with an adult surgeon at U of M. My kids stayed seeing our Ped Cardiologist becuase we have seen her for 10 yrs.(Dr. Wechsler) Everyone at the clinic knew my kids and we trusted her.

 

[PJmomrunner]

"The deep freeze" is Deep Hypothermic Circulatory Arrest. DHCA is when they work off pump (without the bypass machine circulating one's blood) at very low temperatures to protect the brain. It is often used when working on the aortic arch to avoid the clamping (and damaging) of the (fragile) aorta that comes with using the machine.