My Son's Broken Heart - What Is The Best Choice?

[Son's Broken Heart]

My son is 15 years old. He was born with an aortic stenosis, bi-cuspid and ventricular septal defect. He had several open heart procedures at 2 1/2 weeks to 2 months of age. They did a coratation of the aortic artery due to is being stenosed and then did stents for the aortic valve. He's done very well since and only needs a daily dose of Enalapril and anual check-ups. However, it has been expected and planned that sometime during his "teens" he will need a valve replacement. His cardiologist has mentioned replacing with a mechanical valve. While I realize these last a long time, generally a lifetime, I am VERY concerned about him needing anticoagulant meds for the rest of his life. This is even more of a concern due to his young age and the risk of head bleeds from the meds alone much less being a boisterous boy. (He already hasn't been allowed to play sports and I would haI am leaning toward a tissue valve but then of course he will likely need that replaced in 10-15 years or less. I am concerned, confused and unsure and would greatly appreciate any information others may have especially any who have been in a similar situation.

 

[Fundy]

At 15, I probably wouldn't expect a tissue valve to last 10-15 years. You might be looking at averaging 7 at best is my guess. It could even be less if he's active at all. If he's not too active then bleed risk with a mechanical is less of a factor too. Myself at 45 am expecting 10-15 years from the tissue I just got, my cardiologist I believe mentioned she thought possibly 15, my surgeon said I may only get 6-8 years even.

If your son went tissue, he may be looking at 10 surgeries to get to age 65. Could easily be 4 surgeries by time he's 30. At age 65 tissue valves are lasting 20 years or more quite frequently. But its probably too much to ask for good luck through ten OHS's.

I did choose a tissue valve myself after being almost certain I was going mechanical. But mechanical valve is a really good choice too. I've had a surgeon and a doctor tell me Anticoagulation Therapy isn't that big of a deal, and at worse a cut that normally only bleeds for a minute, would bleed for two.

 

[Sarah_Louise]

I'm 17yrs old and was born with a CHD (see signature) and i've had four lots of OHS, two of them being valve replacements, the first one i had in was a mechanical one, but i had problems with anti-coagulations and my valve ended up sending clots to most the organs in my body & blocking my arteries, (but i could write my own medical text book as i don't follow the "norm" and my docs have said they have never seen anyone react the way i did to anti-coagulants) so i ended up having the valve change to a tissue one, i have been told i'll maybe get 5 years-ish out of it, but atm it's been in 6th months and i'm already getting regurgation on it, so i might not even get the 5 years!!! If i didn't have the problems with anti-coagulation i would have wanted the mechanical valve in becuase they last longer,
Has your son said which he preferes? Cause he's 15 he sould also have a say
Love Sarah xxxx

 

[Duffey]

You don't mention how soon replacement will be needed. If it's still a year or so away, I would put my worries about valve choice on hold and see what new developments there are closer to surgery.
If you have consulted a surgeon, then I'd ask his opinion. Cardiologists and surgeons sometimes hold very different views regarding the timing of surgery and the type of valve.

 

[Lynlw]

I'm sorry i know what a hard thing it is to having a teen needing surgery. I do agree with Sarah, since he is 15 I would make sure he is part of the discussions and any decisions that need to be made.
We were "lucky" that Justin's valve replacement was on the right side whre they tend to always recocomend tissue so didnt have to deal with that decision, I honestly don't know what I would do..One of the things that make it toughhaving a baby/child with heart problems is you have to make so many decisions that effect the rest of their lives, and hope the choices you make are ones that make them happy when they are old enough to be incharge of their lives and medical decisions. Do you know what your son prefers?

but I'm not sure why people say IF they got a tissue now they would need many replacements in the future, it IS possible to get 1 tissue valve to get to a certain age group and then choose a mechanical if thats what they want, kind of like many people reccomend for teen girls to get them past the childbearing years. But then you are definately signing up for at least 1 more surgery.

How many OHS has he had already? I'm guessing the stents were by cath, I probably would take how many OHS he has already had into consideration too. I'm sorry I wasn't more of a help.

PS I just read Duffy's reply and think she makes good points too

 

[wxman]

It's difficult to know what to do. I was in a similar situation as a young child...I had aortic coarctation repaired when I was 10 years old. I was told I would probably need aortic valve replacement in a few years. However...I stayed in good health for many years and did not need to have my valve replaced for another 40 years. So...I was actually 50 by the time the situation became critical. And by that time...the mechanical valve was the clear choice. Anti-Coagulation has so far been no big deal at all. I have been doing it for 10 years. No one can guess how your sons condition will progress...but is best to just watch and wait and not worry about it too much until it actually comes.

 

[dick0236]

I am VERY concerned about him needing anticoagulant meds for the rest of his life. This is even more of a concern due to his young age and the risk of head bleeds from the meds alone much less being a boisterous boy. (He already hasn't been allowed to play sports and I would haI am leaning toward a tissue valve but then of course he will likely need that replaced in 10-15 years or less. I am concerned, confused and unsure and would greatly appreciate any information others may have especially any who have been in a similar situation.

Welcome to the site. My concern would not be "head bleeds from the med alone" or "needing anticoagulant meds for the rest of his life". I would be more concerned about a teenage boy (I've raised two sons, who have also raised one son each) being mature enough to develop, and maintain, the necessary ACT (Anti-Coagulant Therapy) routine. Problems with anti-coagulants are, most often, due to patient non-compliance with the drug (failing to take the med, INR test routinely or developing the necessary personal habits). Perhaps it would be better to "go tissue now" and hope that your son will be in his twenties, and more mature, before needing his next surgery. At that age he will be more likely to accept the necessary "ACT" routine.....and likely to live a long time on anti-coagulants:biggrin2:.

 

[chaconne]

Is the Ross Procedure an option for your son? If you are not already aware of this, it involves replacing the aortic valve with the patient's own pulmonary valve and then the pulmonary valve with a tissue valve. This has fallen out of favor with many surgeons because of it's complication and needing to do a double valve replacement, but I've heard it's still a good choice for the young.

Otherwise, mechanical might be a good option since it may not need replacing for a long time, if ever. An anti-coagulation regimen can be adapted to over time and there are newer valves on the market that may end up proving to need less Warfarin (On-X, ATS, St Jude Regent). THere's also the "cool" factor of having a mechanical valve. I don't know how your son would feel about it, but even at age 41, I'm proud to be a "bionic man" and have a mechanical marvel softly clicking away in my chest.

 

[Lynlw]

Is the Ross Procedure an option for your son? If you are not already aware of this, it involves replacing the aortic valve with the patient's own pulmonary valve and then the pulmonary valve with a tissue valve. This has fallen out of favor with many surgeons because of it's complication and needing to do a double valve replacement, but I've heard it's still a good choice for the young.

Otherwise, mechanical might be a good option since it may not need replacing for a long time, if ever. An anti-coagulation regimen can be adapted to over time and there are newer valves on the market that may end up proving to need less Warfarin (On-X, ATS, St Jude Regent). THere's also the "cool" factor of having a mechanical valve. I don't know how your son would feel about it, but even at age 41, I'm proud to be a "bionic man" and have a mechanical marvel softly clicking away in my chest.

I'm not sure a teen age or even when they reach college age would think having a mechanical valve is "cool" so would be a good reason to choose a certain type of valve. IF a teen HAS a mechanical valve of course like everything else, I would try to make suggestions that MIGHT make them feel a better about being "different" in a certain way, either because of scars or other things, like when justin had his pacemaker. BUT from having a teen going thru surgeries and dicussing different types of valves, AND from having alot of Moms (usually its Moms on different groups) If anything teens pretty much want to do anything to make them blend more in with their friends (being unique in things THEY choose to be unique about like clothes or hair) and pretty much want NO part in things like ticking that can make them stick out more, especially if they've heard other peoples with mech valves they heard tick. Some might think it is cool, but I doubt most would.

 

[Sarah_Louise]

I'm not sure a teen age or even when they reach college age would think having a mechanical valve is "cool" so would be a good reason to choose a certain type of valve. IF a teen HAS a mechanical valve of course like everything else, I would try to make suggestions that MIGHT make them feel a better about being "different" in a certain way, either because of scars or other things, like when justin had his pacemaker. BUT from having a teen going thru surgeries and dicussing different types of valves, AND from having alot of Moms (usually its Moms on different groups) If anything teens pretty much want to do anything to make them blend more in with their friends (being unique in things THEY choose to be unique about like clothes or hair) and pretty much want NO part in things like ticking that can make them stick out more, especially if they've heard other peoples with mech valves they heard tick. Some might think it is cool, but I doubt most would.

Have to say my school friends & even family thought it was cool that i ticked, it also made topic for conversation
Sarah xxxx

 

[Fundy]

Does the heart grow much after age 15? I'm just wondering if long term a mechanical was desired by your son, if it might not be better to bridge to full heart growth with a tissue valve anyway. Or is heart fully grown at age 15 anyway?

 

[markp66]

I personally would either go for a mechanical or the Ross procedure at his age. A tissue valve would fail very quick and he would be facing a 2nd op at 20-25. Warfarin is very well tolerated in young people and risks are minimal although as you mention, bleeding can be an issue at his age. A mechanical valve could last 50,60+ years. Hard to say as nobody has had one for that long but they are built to last a lifetime (and many more!).The Ross procedure is a bit of a risk. If it works then it can last a long time, maybe 20 years+..It certainly isn't a life long fix like people thought a few decades back. You also create a 2 valve problem as the removed pulmonary valve is replaced with a homograft. Although this generally lasts a long time there is no doubt it would need replacing at some point. This is an easy valve to replace and would probably done by cath when the time came.

Apart from a mechanical valve you are guaranteeing at least another open heart surgery in a lifetime. Reops with mech valves certainly do happen also due to Pannus, leaks around the valves, infections etc but this is the only option that has the potential to last a lifetime.

One other point- studies have shown that valve stenosis at an earlier age is also associated with a dilated aorta. I mentioned it in another post earlier about how my surgeon did a bentall procedure on me even though my aorta wasn't at the correct measurements for replacement. Many people opt for mechanical valves thinking it will last a lifetime only to have the root and valve removed due to an aortic aneurism later down the line 5,10,15 years later (which completely defeats the object of having a mech valve!)

So many things to consider but I'm sure you will figure it out.

And about mech valves not being cool. I kind of agree but so far nobody part from a friend who is a doctor has heard my valve. I'm struggling to hear it now thinking about it and this is 7 weeks post op. It's meant to go even more quiet as time passes. My heart beating is making more noise than my valve! What isn't so cool is taking warfarin and not being able to go out and drink a lot with friends. However, this is such a small price to pay.

Good luck. I'm sure you will make the right decision. There is no right or wrong decision but as many people have constantly said, they are all better than the alternative... (I gues a bit of expensive metal, keeping me alive is pretty cool thinking about it)

 

[hannahsmom]

I agree that the choice is very tough. My daughter needed replacement last year (She was 10 yrs old at the time). Our original plan was the Ross procedure (optimal for young patients). When we discussed plan b with 2 surgeons and her cardiologist, they all agreed that mechanical was the best route for someone her age. Her surgeon (Dr. Bove @ Motts of UM) decided while in surgery that her pulmonary valve, while perfect in it's current position, would not have made a very durable aortic valve and would have needed replaced in less than 10 years. He went with plan b. I will be honest and tell you I was devastated! After speaking to him post op he made me realize that this was not the end of the world for Hannah.

She was given an adult size valve, to hopefully prevent future surgeries. She returned to dance and gymnastics (both her surgeon and cardiologist approved) 6 wks post op. We have had her INR stable for almost a year. My husband and I have made sure to educate her on her medication. She knows what to eat (I feed her her greens to make sure they are consistant) when she is not at home, which is never really an issue since they usually aren't serving spinach and broccoli at sleepovers. We have a short conversation with friends, family, just to give them a heads up. She has had minor cuts and bruises throughout the past year and I have not noticed a significant difference in how she clots or heals. Just as it was stated above, what once took a min to stop bleeding, now takes two. She sets an alarm on her phone for 9 pm to take her meds. If she is at a friend or family member's for the night, she simple texts me - "Took my pills". I was also concerned with the sound of her valve causing her destress. I am blessed to say this has not been the case. Her dad very soon after she was off the morphine explained to her that we had to go with plan b and that she had a superhero valve (prob won't fly with a 15 year old). She is not bothered by the sound (we only hear it every now and then) and actually lets her friends listen. An aquarium in her room helps drowned out the sound at bedtime.


Hannah was in the consultations with her surgeon and he fully explained everything to her - Plan A and B. I felt this was very helpful to her. The more she understood, the less scared she was. I think with your son, being as old as he is, he would benefit from this as well.

Hannah had a repair at 4 years and the replacement at 10. My biggest hope is that she never has to endure another surgery. Hopefully our biggest hurdle in the future is having children as warfarin is known to cause birth defects. This would obviously not be an issue since you have son.

It is a very personal decision. Many members on here chose tissue valves knowing that they would/will need another surgery and are completely fine with the idea. As a family we decided to try and prevent that - at least for as long as possible if not forever.

I wish you and your family the best of luck with you decision and your son's surgery.

Has your son expressed any opinion on way or the other?

 

[neil]

some good points made already,but meet with ur cardio and surgeon and pick there brains,there the experts and there opinions are very important,yes take peoples views on here but dont pick a choice on a total strangers opinion,whatever you decide will save your sons life,

 

[Lily]

some good points made already,but meet with ur cardio and surgeon and pick there brains,there the experts and there opinions are very important,yes take peoples views on here but dont pick a choice on a total strangers opinion,whatever you decide will save your sons life,

Good points, Neil.

To the mother who began this thread, I only had the coarctation and the bicuspid valve but was also never allowed to play sports or participate in physical education in school. My coarctation was repaired at age 17. I know that I was not mature enough or serious enough or responsible enough to have taken coumadin at that age. Maybe others are. I wasn't. (I recall another mother who used to actively post here on this site and her teenage son wouldn't take his coumadin responsibly, even though he told her that he was taking it.) Anyway, I was probably irresponsible and in denial and I really never wanted to believe I had a heart problem. At the time of the coarctation repair, my doctors mentioned that my valve could have been replaced then, but that they would wait. They also said that it could possibly last me a couple of more decades. As things turned out, it did last me for awhile and didn't need replaced until I was 42.

Best wishes to you and your son

 

[sarahsunshine]

As step-mom to a 12.5 year old who just had OHS to replace 2 valves, “we” chose (the surgeon basically), mechanical On-X valves. This was a happy moment since having done tons of research, that’s what I picked, and then found out that’s all the surgeon will use for children.

Anticoagulation isn’t that big a deal (and Skyler has been on it since birth). Increased bleeding risk is not actually that much, considering that they took Skyler and reopened his sternum when his INR was 3.2. He really doesn’t clot that much more slowly than anyone else, though he does get lots of nose bleeds. On that note, however, I’ve met people not on warfarin who just get lots of nose bleeds, and I believe that Skyler is just susceptible to that as well.

Monitoring INR is the most problematic thing, and I would recommend doing home monitoring and dosing if you go the warfarin route. It is extremely empowering to know exactly how to dose yourself, not have to depend on a lab, and to be able to know immediately whether there’s a problem or not, when you suspect it. It can be expensive, depending on what your insurance covers, but if you’ve known about you son’s problems for years, you likely have good insurance coverage.

Best of luck for you and your son. Hope all goes well.

 

[bstew7890]

I'll just chime in to say that I haven't found Warfarin to be problematic. Maturity is something to consider but kids do grow up, and there's nothing like a grown up situation to give them the opportunity to prove it. (Yeah, I'm an optimist, but I've seen it work many times.)

 

[Bill B]

Your story about Hannah touched me. It sounds like she is doing very, very well in no small part because of how well you have handled it with her. Congratulations on the way you and Hannah have managed this tough challenge.

I agree that the choice is very tough. My daughter needed replacement last year (She was 10 yrs old at the time). Our original plan was the Ross procedure (optimal for young patients). When we discussed plan b with 2 surgeons and her cardiologist, they all agreed that mechanical was the best route for someone her age. Her surgeon (Dr. Bove @ Motts of UM) decided while in surgery that her pulmonary valve, while perfect in it's current position, would not have made a very durable aortic valve and would have needed replaced in less than 10 years. He went with plan b. I will be honest and tell you I was devastated! After speaking to him post op he made me realize that this was not the end of the world for Hannah.

She was given an adult size valve, to hopefully prevent future surgeries. She returned to dance and gymnastics (both her surgeon and cardiologist approved) 6 wks post op. We have had her INR stable for almost a year. My husband and I have made sure to educate her on her medication. She knows what to eat (I feed her her greens to make sure they are consistant) when she is not at home, which is never really an issue since they usually aren't serving spinach and broccoli at sleepovers. We have a short conversation with friends, family, just to give them a heads up. She has had minor cuts and bruises throughout the past year and I have not noticed a significant difference in how she clots or heals. Just as it was stated above, what once took a min to stop bleeding, now takes two. She sets an alarm on her phone for 9 pm to take her meds. If she is at a friend or family member's for the night, she simple texts me - "Took my pills". I was also concerned with the sound of her valve causing her destress. I am blessed to say this has not been the case. Her dad very soon after she was off the morphine explained to her that we had to go with plan b and that she had a superhero valve (prob won't fly with a 15 year old). She is not bothered by the sound (we only hear it every now and then) and actually lets her friends listen. An aquarium in her room helps drowned out the sound at bedtime.


Hannah was in the consultations with her surgeon and he fully explained everything to her - Plan A and B. I felt this was very helpful to her. The more she understood, the less scared she was. I think with your son, being as old as he is, he would benefit from this as well.

Hannah had a repair at 4 years and the replacement at 10. My biggest hope is that she never has to endure another surgery. Hopefully our biggest hurdle in the future is having children as warfarin is known to cause birth defects. This would obviously not be an issue since you have son.

It is a very personal decision. Many members on here chose tissue valves knowing that they would/will need another surgery and are completely fine with the idea. As a family we decided to try and prevent that - at least for as long as possible if not forever.

I wish you and your family the best of luck with you decision and your son's surgery.

Has your son expressed any opinion on way or the other?

 

[onxvalvefan]

Son's broken heart

I had my aortic heart valve replaced August 15th of 2011. I'm 34 and I still believe I'm a teenager most of the time (lol) so I can sympathise with your sons delima.

Out of all of the thoughts that I had and of all the choices that I had to make the MOST IMPORTANT thing was that I never want to have to go through this again...ever. The fact is that if you go with a tissue valve, regardless of the manufacturer it will fail within 30 years but most likely sooner. Your son has girls, graduations, spring breaks, summers by the pool and what ever else boys are into ahead of him and he deserves the best chance to enjoy those things with as normal a life as possible.

Trust me when I say it's a terrible feeling when you have to look your new wife who is pregant in the eye and tell her you have to have open heart surgery and I might not be around to watch our first born grow up. People on here talk about there surgeries like there not that big of a deal because we are a little battle hardened but they are and even more so for the loved ones involved. I would hate for son to get a tissue valve becuse of a fear that he wouldn't be compliant with medication and then be married with a kid (or kids) and look them in eye and say "well I didn't want to take my medicine so now I'm getting my chest crackedd open for the second time." Being on a Caumadin regimen is paultry compared to a second or third surgery. I was never compliant with pills but I am darn sure compliant now and it doesn't enter my mind once that's inconveniant to take them. I've cut myself shaving, smashed my figures that turned my nails black and cut my arm doing yard work and nothing is different than before my life on Caumadin. I didn't even change a thing about my diet and my levels are always within range.

I have an On-X valve that was put in by Dr. Igor Gregoric in Houston TX at St. Lukes and I couldn't be happier. Maybe one day because of the valve's features I won't have to be on Caumadin but I sleep better every night knowing theres a strong chance I'll never have to have this surgery again.

I hope this helps and god bless you both.

 

[onxvalvefan]

I forgot to add that the ticking is loud and mentally that is something he'll have to deal with. The doctors failed to mention this detail in our discussions. This valve will give you away at a Poker game faster than getting dealt 4 aces but I stll wouldn't trade it in for a tissue valve.