Hi - new here

[bethann]

Hi, I've been lurking and learning for awhile now and thought I should introduce myself and my son.

My son Nathan (11) had a BAV. We never knew - he had no murmer or symptoms that were attributed to his heart. Last year he developed endocarditis. We suspect he had this for months before it was diagnosed. He had had many fevers (assumed viruses, bronchial infections etc) throughout last winter. We finally pushed he dr into doing some blood work to see if anything was causing all of this, and he came back with signs of infection, severly anemic, etc. It took another 3 weeks and the pediatrician finally hearing a murmer to send us the ER. That day they suggested operating right away and replacing the infected and severely damaged valve...they gave us/me (my husband was on an airplane heading home) a choice between a pig/mechanical valve. A good friend/cardiologist at Lennox Hill in NY - helped me choose and spoke to the surgeons for me. It was quite a day!!! This was past May. I must admit, that there are times I question the choice - wish the ross procedure had been an option etc, but I'm glad we got the infection out before it caused something worse.

He now has a 21 mm st jude valve. It's been an adjustment. He is a sports obsessed boy and incredibly active, and has had to give up baseball, soccer and his dreams of a career in the nfl . But he is now playing tennis and is getting quite good and is in a league. His school is a very nurturing place and we have let him loose on the playground and in PE. So far, so good. And while I wish we had known early enough to prevent this, I'm relieved that his heart is healthy and he is strong.

We monitor his INR at home. That is going well...and I'm learning when to push back with the nurses/doctors on dosing changes.

And thanks to this sight, he eats normally - and we learned that we didn't need to stop vitamin K, but keep it consistent.

I worry about what's next - will the valve be too small? what if he grows to fast? what if he hits his head? etc ... but mostly keep it under control. And most importantly, let him live a normal childhood.

I hope this is the right place for this post. Feel free to move it if not.

thanks for this wonderful site and hello.

Bethann

(Nathan 11, AVR 5-18-09 St Jude 21mm)

 

[BlindFaith]

Hello & welcome Bethann & Nathan... you came to the right place, there are many people here that can help. Ask or post anything you want. I'm sure someone will come along and talk about sizing of the valve while the body grows and what the issues (if any at all) might be. Good luck in continued good health.

 

[nngbwh]

Welcome aboard.......

 

[jax]

Welcome to the forum. There's nothing worse then your child being sick.

 

[ALCapshaw2]

Welcome Aboard Bethann and Nathan!

It sounds like you are doing all the right things. I can understand giving up Football but I wonder about Baseball. Did you discuss this with his Cardiologist / Surgeon / Coumadin Manager?

As you probably already know, Head Protection is probably the main concern. Bumps and Bruises will come and go but aren't likely to be life threatening. Do you read the Active Lifestyles Forum to see what other Valve Patients are doing in their active lives?

Keep up the Good Work !

'AL Capshaw'

 

[karen14]

Welcome Bethann & Nathan!
Thank you for sharing your story! It's amazing what you've done for your son Bethann; you faced the problem head-on, and did what was needed! I wouldn't worry about all the 'what-if's,' either; just take it a day at a time. With regular check ups, you'll learn if anything more needs attention. And monitoring the Coumadin, INR's, at home is very good! It is important that Nathan can still be an active kid, as you've realized yourself. That's the best gift you could give him, as having the OHS itself can be a traumatic event. Keep up the great work mom!
You and Nathan are in my prayers, ~Karen14

 

[olefin]

Bethann & Nathan, welcome to the forum.

Sounds like you're on top of everything and thanks for sharing. I learned from your story, I didn't know a person could have a BAV without having a murmur. You're already doing home testing and that is great.
Wish you and your son the very best.

 

[Ross]

Tell him to put a helmet on and go play baseball! No reason not too. NFL football might be a problem, but people still play anyhow. Coumadin should NOT be a restriction to an active life. Use common sense and protect the noggin if there is a possibility of trauma to the head, but even in normal coagulated people, trauma to the head can be deadly. Heck I dont' do any sports and I still whack my head on car door frames and occasionally a stationary wall whenever the klutz ray from outer space zaps me. Now, I may not be right in the head, but I'm still here, on Coumadin, eating my spinich, brussel sprouts, asparagus, brocolli, and everything Dr. Gourmet will tell you to stay away from! Oh yeah, forgot to say, drinking my CRANBERRY JUICE TOO!

 

[skeptic49]

Hi, I've been lurking and learning for awhile now and thought I should introduce myself and my son.

Hi Bethann,

I'm glad to read of Nathan's successful surgery. I wish him the best for the future.

Jim

 

[Lynlw]

Hi Bethann, I can understand some of your thoughts and feelings since my 21 year old son is also the heart patient. Justin also had BE when he was 11. But he already had a couple heart surgeries, so we weren't blind sided. Justin isn't on any meds, but he has outgrown some of his repairs so needed more surgery (his first surgeries were 10 days and 18 months). I can't give any advice, I know it is next to impossible, but I try to think about right now and not try to think about all the what ifs. Justin has already had way more surgeries than we expected by this time, but one good thing IF Nathan does need future surgeries, is they are getting very good at doing repeat surgery, especially at the leading centers. Like you, I tried to let Justin have as normal of a life as possible and be as active as his friends, played sports Scouts ect. from 10-17 he had a pacemaker, and with his heart histrory there were just some sports he was never able to get docs permission to play, so of course THAT was the sport Justin REALLY wanted to play (football), even tho sometimes i was pretty nervous, I tried to hide it. I'm glad Nathan is enjoying tennis.
I'm glad you joined in. this is a good group

 

[Lynlw]

Tell him to put a helmet on and go play baseball! No reason not too. NFL football might be a problem, but people still play anyhow. Coumadin should NOT be a restriction to an active life. Use common sense and protect the noggin if there is a possibility of trauma to the head, but even in normal coagulated people, trauma to the head can be deadly. Heck I dont' do any sports and I still whack my head on car door frames and occasionally a stationary wall whenever the klutz ray from outer space zaps me. Now, I may not be right in the head, but I'm still here, on Coumadin, eating my spinich, brussel sprouts, asparagus, brocolli, and everything Dr. Gourmet will tell you to stay away from! Oh yeah, forgot to say, drinking my CRANBERRY JUICE TOO!

The only thing is, I know from Justin, playing in organized sports, with heart issues, pacemaker and most likely coumadin is very hard if not impossible. Both the school and leaugue have all kinds of rules mainly to cover their butts in case someone gets hurt because of lawsuits. You can fight it but sometimes the child doesn't want to stick out. Justin had 2 heart surgeries before he even went to school but I guess no one paid attention until he was 10 and had surgery and got the pacemeaker, the town basketball leaugue really did not want to let him play with his pacemaker, even thos we had doctors permission, I just about had to threaten to take them to court, because I heard since we insisted Justin could play they were going to send a letter to every other parent letting them know their kid would be playing in a league with a kids with heart problems and a pacemaker, (my guess is to get them to make us feel like we should just give up). Then you deal with coaches just not picking them, because THEY don't want to deal with what happens if they get hurt ect. Of course officially they won't say thats why they didn't make the team, but we were told that by other coaches.

Now playing for fun, at recess after school is different, but to play competively can be a problem. I know it isn't right and is frustrating, but that is how it is.

 

[bethann]

Thanks for the warm welcomes and advice. I appreciate the push back on baseball, and I will admit it's one decision I revisit. We've had 2 different opinions from the cardiologists. Of those that said yes, one also cautioned that Nathan couldn't get hit in the chest with the baseball - that the valve may stop. Well 11 year old boys are at an age where their reflexes and control are not developing as fast as their strength. There is a good chance he'll get hit somewhere in his chest.

I've researched like crazy to try and understand all of this more, but there is very little out there other than listing 'no contact sports' - what does that mean? Something different for everyone.

We've been told he needs to avoid being hit in the chest and jarring motions - like diving boards, amusement parks etc. Both of these cautions I haven't seen elsewhere, so I don't know if it's over-cautious or not.

We're trying so hard to not be overprotective - I took him camping 7 weeks after surgery, while on lovenox shots (due to a very low inr reading) - but maybe we're wrong on this.

Lynn, thanks for your perspective as a parent and on the league issue. I hadn't even considered that the league wouldn't let him play. And it's comforting to hear successful stories of repeat surgeries.

Bethann

 

[Lynlw]

Thanks for the warm welcomes and advice. I appreciate the push back on baseball, and I will admit it's one decision I revisit. We've had 2 different opinions from the cardiologists. Of those that said yes, one also cautioned that Nathan couldn't get hit in the chest with the baseball - that the valve may stop. Well 11 year old boys are at an age where their reflexes and control are not developing as fast as their strength. There is a good chance he'll get hit somewhere in his chest.

I've researched like crazy to try and understand all of this more, but there is very little out there other than listing 'no contact sports' - what does that mean? Something different for everyone.

We've been told he needs to avoid being hit in the chest and jarring motions - like diving boards, amusement parks etc. Both of these cautions I haven't seen elsewhere, so I don't know if it's over-cautious or not.

We're trying so hard to not be overprotective - I took him camping 7 weeks after surgery, while on lovenox shots (due to a very low inr reading) - but maybe we're wrong on this.

Lynn, thanks for your perspective as a parent and on the league issue. I hadn't even considered that the league wouldn't let him play. And it's comforting to hear successful stories of repeat surgeries.

he wore Bethann

I'm a little confused, I thought with coumadin the main concern was head injuries or internal bleeding, and truthfully never heard if you got hit in the chest it could hurt a valve. Now I'm just a Mom, not medical professional, but I was always told the concern for getting hit in the chest, amusement rides ect, didn't have anything to do with coumadin, but with chances of going into deadly rythm or any heart that had surgery, stopping.
With that being said, Justin did have a pacemaker in his abdomen that could get broken if he got hit or at least the leads could break, BUT he was allowed to play baseball (as a catcher) , soccer and basketball as long as he wore a chest protector (a small thing you wear under your shirt) WE had to have an extra medical letter from his cardiologist and sign some legal waivers and in OUR experience, as far as sports with medical problems, soccer and basketball are considerred contact sports. He could never play football or lacrosse (not a problem were we live)
As for 11 year olds and sports, yes it is amazing how much contact can be in even baseball, my fear for Justin when he was catching wasn't the kids sliding into him and trying to take him out, but the kids that would hit the ball and get so excited they would really throw the bat. I think how "safe" baseball is has alot ot do with what position you play, pitchers can really get hurt when balls come back at them fast and catchers get pretty banged up, but other positions are probably safer. Altho at that age, when pitchers are getting speed, but still not that consistent with accuracy, there are alot of batters that get hit by pitches. Even with helmets I've seen kids go down after getting hit in the head, but usually the chest is pretty safe since they tend to get hit on the side.

 

[OldNick]

Hi Bethann,

Your experience in diagnosing Nathan's problem parallels my own, though I was retired at age 63. After months of examinations by several doctors, and treatments for "sinus infections, etc", I continued to have "fever of unknown origin". When I was hospitalized for this condition and kidney stones, my heart problem was not diagnosed as endocarditis until a young female resident, with very sharp ears, discovered a heart murmur. Once it was determined that I had an infection on my mitral valve, the older doctors listened and said, "Oh yes, I can hear that, too". It is not a condition that most doctors quickly diagnose.

 

[Lynlw]

Hi Bethann,

Your experience in diagnosing Nathan's problem parallels my own, though I was retired at age 63. After months of examinations by several doctors, and treatments for "sinus infections, etc", I continued to have "fever of unknown origin". When I was hospitalized for this condition and kidney stones, my heart problem was not diagnosed as endocarditis until a young female resident, with very sharp ears, discovered a heart murmur. Once it was determined that I had an infection on my mitral valve, the older doctors listened and said, "Oh yes, I can hear that, too". It is not a condition that most doctors quickly diagnose.

Justin had 2 heart surgeries BEFORE his BE and it still took a while for his old peds to diagnose it, he went from, sinus infection to stomache virus to something else each time we went back, they decided since he was run down he was just catching everything that was going around the school. The fact he had a dfferent doc in the practice each time I took him didn't help, but it wasn't until I insisted it was all the same thing and demanded bloodwork was his BE diagnosed. We had a new ped group before he was discharged from the hospital since I lost all faith in them.

 

[Ross]

Thanks for the warm welcomes and advice. I appreciate the push back on baseball, and I will admit it's one decision I revisit. We've had 2 different opinions from the cardiologists. Of those that said yes, one also cautioned that Nathan couldn't get hit in the chest with the baseball - that the valve may stop. Well 11 year old boys are at an age where their reflexes and control are not developing as fast as their strength. There is a good chance he'll get hit somewhere in his chest.

I've researched like crazy to try and understand all of this more, but there is very little out there other than listing 'no contact sports' - what does that mean? Something different for everyone.

We've been told he needs to avoid being hit in the chest and jarring motions - like diving boards, amusement parks etc. Both of these cautions I haven't seen elsewhere, so I don't know if it's over-cautious or not.

We're trying so hard to not be overprotective - I took him camping 7 weeks after surgery, while on lovenox shots (due to a very low inr reading) - but maybe we're wrong on this.

Lynn, thanks for your perspective as a parent and on the league issue. I hadn't even considered that the league wouldn't let him play. And it's comforting to hear successful stories of repeat surgeries.

Bethann

Bethann a lot of what you hear is mere fear mongering. As Lyn pointed out, if he has an ICD, then no, you don't want him getting hit in the chest, but other then that, we have people doing Tae Kwondo and other such sports, so I don't see where the "Can't get hit in the chest" part comes into play except in the case of recent surgery or ICD implant. Sounds like someone is trying to scare the daylights out of all of you for no real reason.

 

[njean]

Just wanted to welcome you & your son to this forum. So glad you found us. Hopefully by reading our posts & the active lives that some OHS survivors lead, will help disspell some of the fears you & your son might have. Some of us feel that we actually didn't start living until AFTER OHS so I pray this is the case for your son as well.

Like others have said, don't dwell on the "what-if's" or try to be too protective of your son's activity. Off course I would strongly advise against extreme sports such as bullriding, peragliding, skateboarding, etc., but there are a lot of wonderful & safe sports out there like tennis, ......archery?......

Best of luck to you & Nathan!

 

[Doug]

I played and coached in little league (of course not both at the same time). I played catcher and when the batter slings the bat, it will typically hit the catcher in the back. It would have hurt a lot less getting hit in the chest because of the protector.

As a coach we were taught to be extremely careful of kids getting hit in the chest by a hard hit or thrown ball. There have been cases where the heart stopped. How much more it would affect the valve or sternum, I don't know. Maybe if he wore a small protector under his jersey?

Other than that, I would say pack some pads and tape in his bag for the cuts and scrapes that will come. I have some nifty scars from chasing foul balls and such.

 

[Ross]

I played and coached in little league (of course not both at the same time). I played catcher and when the batter slings the bat, it will typically hit the catcher in the back. It would have hurt a lot less getting hit in the chest because of the protector.

As a coach we were taught to be extremely careful of kids getting hit in the chest by a hard hit or thrown ball. There have been cases where the heart stopped. How much more it would affect the valve or sternum, I don't know. Maybe if he wore a small protector under his jersey?

Other than that, I would say pack some pads and tape in his bag for the cuts and scrapes that will come. I have some nifty scars from chasing foul balls and such.

Hey, aren't you the guy that allowed the line drive straight into my face?

 

[bethann]

Thanks so much for the responses.

Ross, you've made us think - which is really important. We remain determined to not overprotect, so I appreciate it.

Doug, That is good to hear from someone who understands the sport. Thanks for taking the time to respond.

Nick and Lynn, your comments are hugely appreciated. I must admit to feeling a significant degree of maternal guilt that I didn't recognize something big was going on sooner and get him help. Knowing that it is missed regularly, while it doesn't change the outcome, relieves the guilt a bit.

bethann