For Kids- what do you guys think is appropriate to tell them?

[delvalle6]

Ok. So my son is seven. We are going in to the cardiologist on the 9th of September. How much information should he have?
He knows he has a heart condition. He knows that someday they will have to "go in and fix it". That's all he knows. (or that's all I think he knows)

Last night, his younger brother was throwing a fit and kicking his feet in wild directions and accidentally kicked Sammy in the xyphoid process. It knocked the wind out of him. It really scared him because he started saying that his brother almost killed him... I'm wondering.. have I allowed him to hear too much? Or maybe not enough?
Last time we went to the cardiologist the cardiologist and I had a discussion about prophylactic antibiotics and how bacteria can get to the valve. (He was in the room) Afterwards, when my son got a large scrape he freaked out and said that he was too young to die.

I guess I am trying to figure out- do I need to really sit down and explain things to him or do I need to make sure he doesn't hear anymore until surgery is imminent?
We never talk about things unless he gets freaked out. The other boys know and they don't really talk about it either. My oldest son is very protective of his brother and sometimes I think they've just overheard too much- but I'm not sure if that warrants a sit down intentional discussion or if I should just let it go until we have some sort of surgery timeframe. this is so much easier when it isn't personal.

 

[Bigred]

First of all, everyone is going to have a different opinion w/regard to this post. I'll give you my advice as someone who had a congenital defect, had yearly check ups since the age of 3 and had avr at 15 yrs old...and now I'm 35.

Your son is 7, he is aware of more than you think. That being said, he's only 7 so he may not fully understand everything going on with him. I would sit down and ask him to explain his condition to you. This way you can get a good baseline as to what he knows. From there you can correct him on small bits of info that he may have wrong and add a little as well. Don't overdo it though. Remember he's 7. Don't keep the kid in the dark but at the same time let him be a kid. Make sure he knows the signs/symptoms that he's supposed to tell you and the dr about. e.g. dizziness, shortness of breath, chest pain, feeling faint.

Just giving him some reassurance will go a long way and he won't feel like he has to live in a bubble.

again, just my opinion here.

Keith

 

[Ross]

First of all, everyone is going to have a different opinion w/regard to this post. I'll give you my advice as someone who had a congenital defect, had yearly check ups since the age of 3 and had avr at 15 yrs old...and now I'm 35.

Your son is 7, he is aware of more than you think. That being said, he's only 7 so he may not fully understand everything going on with him. I would sit down and ask him to explain his condition to you. This way you can get a good baseline as to what he knows. From there you can correct him on small bits of info that he may have wrong and add a little as well. Don't overdo it though. Remember he's 7. Don't keep the kid in the dark but at the same time let him be a kid. Make sure he knows the signs/symptoms that he's supposed to tell you and the dr about. e.g. dizziness, shortness of breath, chest pain, feeling faint.

Just giving him some reassurance will go a long way and he won't feel like he has to live in a bubble.

again, just my opinion here.

Keith

I would concur.

 

[halleyg]

I agree with what Keith said about asking him what he knows, in order to see what it is he knows and/or understands about your situation. When I had both of my OHS, my kids were 4 and 6. I had been having issues before with symptoms, so trips to the ER and so forth, tried to keep away from them as much as we could but also explain to them what they saw going on. The year of my surgeries, my oldest always seemed to have "heart pains" which at first worried me but then realized she was saying this b/c of what I was going through; kind of like what your son is saying. I was really worried at the time that I had traumatized her but eventually as I healed, her "pains" went away. For months and months afterwards the two of them would ask if my scar was OK, when my heart would stop ticking or my scar would go away and you just have to tell them the truth about things but I don't feel that they need all the information. They knew at the time that I was going to get my heart fixed and that the dr. would have to cut me open to get in there. They would ask questions like, did he use scissors? I found it wasn't as scary for them if you just talk about it on their level, definitely don't leave them in the dark which causes anxiety IMO, but doesn't sound like you are doing that. Best of luck.

 

[bit of a chicken]

I think open honesty on level he can understand is the best way to proceed. I had surgery as a child; I was treated with honesty , never wrapped in a bubble, always encouraged and invited to question anything I felt I needed to. I think with children it is always good to encourage them to trust you and keep the invitation open always for further discussion whenever they feel they want to... Children always surprise me with their resillience . My children quite often demand to know what is what.. they like to feel they understand a situation for what it is.. I always try and direct it at the appropriate level to their age . Good luck for the future for him.

 

[Eva]

First of all, everyone is going to have a different opinion w/regard to this post. I'll give you my advice as someone who had a congenital defect, had yearly check ups since the age of 3 and had avr at 15 yrs old...and now I'm 35.

Your son is 7, he is aware of more than you think. That being said, he's only 7 so he may not fully understand everything going on with him. I would sit down and ask him to explain his condition to you. This way you can get a good baseline as to what he knows. From there you can correct him on small bits of info that he may have wrong and add a little as well. Don't overdo it though. Remember he's 7. Don't keep the kid in the dark but at the same time let him be a kid. Make sure he knows the signs/symptoms that he's supposed to tell you and the dr about. e.g. dizziness, shortness of breath, chest pain, feeling faint.

Just giving him some reassurance will go a long way and he won't feel like he has to live in a bubble.

again, just my opinion here.

Keith

A very wise respond. As keith said, just keep reassuring him as often as you see him wondering. Good luck to both of you.

 

[netmiff]

I think Keith aced this one - top of the class you go, young man !

Jus wanted to add what bit of a chicken said " I think with children it is always good to encourage them to trust you and keep the invitation open always for further discussion whenever they feel they want to... "

Just bring it up occasionally at appropriate moments - maybe when something about hearts is on the news - and keep it casual.

Before my AVR, my cardio said my heart made a "musical" noise, so any doctor or nurse that wanted to listen to it got the chance. Now I let them hear my "ticker"

"We never talk about things unless he gets freaked out." - why??? maybe it's time to change that; maybe get the cardio to explain it to him, he may have more experience than you (not trying to put you down, but the cardio deals with this more often than you do, I hope!)

 

[ALCapshaw2]

First of all, everyone is going to have a different opinion w/regard to this post. I'll give you my advice as someone who had a congenital defect, had yearly check ups since the age of 3 and had avr at 15 yrs old...and now I'm 35.

Your son is 7, he is aware of more than you think. That being said, he's only 7 so he may not fully understand everything going on with him. I would sit down and ask him to explain his condition to you. This way you can get a good baseline as to what he knows. From there you can correct him on small bits of info that he may have wrong and add a little as well. Don't overdo it though. Remember he's 7. Don't keep the kid in the dark but at the same time let him be a kid. Make sure he knows the signs/symptoms that he's supposed to tell you and the dr about. e.g. dizziness, shortness of breath, chest pain, feeling faint.

Just giving him some reassurance will go a long way and he won't feel like he has to live in a bubble.

again, just my opinion here.

Keith

EXCELLENT Response Keith based in your First Hand Experience.

To Dad: You may want to add a comment to the effect that Heart Surgery is a Highly Refined Art and that the Doctors can "FIX" just about anything that might go wrong with a Heart which is why he needs to see his Heart Doctor regularly for a 'checkup' like you do with your car to make sure everything is OK.

'AL Capshaw'

 

[RI Mom]

My son is 7 next week and has been having surgeries and procedures since infancy. We waited until one week prior to surgery to tell my son that he would be going into the hospital and get his heart fixed again. He knows (in kid terms) what is wrong with his heart and why he needed the repair. I brought it up to him while we were playing with his toy medical kit. His response was "awww man!" That was it! When his Cardiologist wants to tell me something that he knows will be difficult, he asks his nurse to take my son to get his stickers or whatever so that he can tell me in privacy. For this last surgery, Idrees did have some questions for his surgeons and I made arrangements for him to be able to ask them in advance.

As far as the "oh no, I'm gonna die" comments.....I don't know whether those are related to the CHD or not. My son is VERY dramatic and will frequently say these kinds of things in order to get attention. Sometimes, it can be just because he didn't get what he wanted.....it is hard to hear as a parent (especially because you know his health is a bit more fragile than his healthy peers) .....but you may consider ignoring it unless he comes to you with a concern. I guess if depends upon how he's using it. Idrees has never been concerned that he would not survive his heart surgeries. I'm more likely to hear about dying if he didn't get the popsicle he requested (apparently you can die from starvation if you don't get a popsickle...LOL)

The Children's Heart Foundation has a book called "It's my Heart" that has some good information for parents in it. You may be able to find some of that on their website www.children'sheartfoundation.org They have a whole chapter on preparing your kid for a hospitalization and lots of the more common procedures are explained.

Best wishes!

 

[terodac]

My daughter was 15 when I had my surgery, I let her know up front what was going on. She went to the first surgeon's office visit and she asked him questions. She was one of my goals to live through this!! She will be 18 this year and wants to go to medical school thinking about being a cardiologist? I think she was ok with my surgery, she knew I was never scared and she knew my strong faith I have with God. I guess younger children I might not tell all, but prepare them for anything and everything. The biggest would be how much they will have to help you after surgery. No fighting LOL!

 

[delvalle6]

First of all, everyone is going to have a different opinion w/regard to this post. I'll give you my advice as someone who had a congenital defect, had yearly check ups since the age of 3 and had avr at 15 yrs old...and now I'm 35.

Your son is 7, he is aware of more than you think. That being said, he's only 7 so he may not fully understand everything going on with him. I would sit down and ask him to explain his condition to you. This way you can get a good baseline as to what he knows. From there you can correct him on small bits of info that he may have wrong and add a little as well. Don't overdo it though. Remember he's 7. Don't keep the kid in the dark but at the same time let him be a kid. Make sure he knows the signs/symptoms that he's supposed to tell you and the dr about. e.g. dizziness, shortness of breath, chest pain, feeling faint.

Just giving him some reassurance will go a long way and he won't feel like he has to live in a bubble.

again, just my opinion here.

Keith

Last night I was sitting with him watching some kids sitcom when he mentioned to me that he was tired a lot. I thought that it was the perfect time to have a little "talk" with him since he brought it up. I asked him to explain his condition and he kind of got this funny look on his face- almost shy, and said that he was fine, that he had to take medicine and that the medicine made him better and that was it. I paused and then asked him if he had any questions. "Nope" was his answer. Then he changed the subject. I mentioned that if he ever felt funny, like the floor was moving when it really wasn't or like the room was spinny that he should tell me right away, or if he had any pain in his chest or felt like he couldn't breathe to let me know... but he just kind of shrugged and said ok.

The wierd thing was that he didn't really seem interested or in the mood-whatever, to talk, but my older son pulled me aside and asked if we could set aside time to talk about it. I was really surprised.

 

[delvalle6]

That was it! When his Cardiologist wants to tell me something that he knows will be difficult, he asks his nurse to take my son to get his stickers or whatever so that he can tell me in privacy. For this last surgery, Idrees did have some questions for his surgeons and I made arrangements for him to be able to ask them in advance.

As far as the "oh no, I'm gonna die" comments.....I don't know whether those are related to the CHD or not. My son is VERY dramatic and will frequently say these kinds of things in order to get attention.

The cardiologist hasn't given me the option to have him step out. Last time I took my mom with me and had her walk with him for a little bit, but the MD has never offered that.

That's funny that your son is dramatic. I have four boys and Sammy's twin, Giovanni, is dramatic like that. Sammy isn't usually dramatic- if he is crying and telling me he's too young to die he really believes he could. I wish Sammy was a little more dramatic- then I would know when he's having issues. He doesn't complain about his symptoms- once in a while he will mention something off-handedly. But for the most part, he is in real pain or very full of fear when he mentions something to me.

The only time that was different was in 2006 when he first realized he had an issue. That summer he would say things like "Mama, my heart needs a bottled water.." or "Mama, my heart needs a cookie". I was really happy when that phase ended. (cause when he said it like that he got whatever he asked for)

 

[Lynlw]

My daughter was 15 when I had my surgery, I let her know up front what was going on. She went to the first surgeon's office visit and she asked him questions. She was one of my goals to live through this!! She will be 18 this year and wants to go to medical school thinking about being a cardiologist? I think she was ok with my surgery, she knew I was never scared and she knew my strong faith I have with God. I guess younger children I might not tell all, but prepare them for anything and everything. The biggest would be how much they will have to help you after surgery. No fighting LOL!

Her son is the patient

 

[MarkU]

My valve was first diagnosed when I was five years old.

Growing up I always knew I would eventually have to have surgery. I guess I accepted it okay, but it certainly helped that I didn't have any restrictions on my activities. I was able to lead a very "normal" life and participate in sports, etc. I had my first cath at Riley Children's Hospital in Indianapolis when I was 15 - I was mad because I had to miss a couple days of football practice.

Looking back, I'm glad I knew and it really didn't bother me too much. I did make sure my girlfriend/future wife knew about my condition before we got engaged. I wanted her to know what she was signing up for.

Fortunately I was asymptomatic until I was 47.

After I started to feel bad I went to my cardiologist and we made the decision to have the surgery almost immediately - within two days.

One of our big concerns was that our daughter was away at her first year of college and preparing for her first semester finals. We decided not to tell her until she got through her exams so she wouldn't be distracted by worrying.
The worst part was that I was in ICU when she got home for Christmas and was shocked and upset to find out about my surgery. She understood the reason for our decision, and I still think it was for the best, but it was very difficult for us at the time.

Mark

 

[delvalle6]

I'm not sure what changed, but Sammy came up to me the other night and started asking questions. I was a little stunned by how articulate he approached the subject. It makes me think the boys have been having discussions of their own.
I told him what I could, what I thought he needed to know. I told him he had a valve in his heart that didn't work very well, that it leaked and didn't open the way it should, that had to work harder to open.

I tried the "car repair" idea that AlCapshaw2 suggested...maybe coming from me wasn't as good as it would have been coming from Dad, but it got the point across. It scared him a little, but I told him that once you fix a part in a car that the car runs more smoothly and you can take it out for more rides- like the 4wd we have. I told him to remember when I couldn't run the Montero through the mud because it needed some parts- bearings and tires- then how once we fixed those things we could take it up steeper hills with more mud. He was smiling a little then.

you've all been so helpful- thank you. The boys are opening up and asking questions. It feels better to talk about it rather than have it be a stressful situation that everyone knows about but nobody discusses. It's taken a little of the "scary" of it for them I think.

I'll just field the questions as they come. My oldest son is the hardest. He gets so angry about it sometimes. He was telling me that if the Dr. messed up that he would be angry. I'm not sure where he got that from, but I told him that we would have a really good doctor and that wouldn't happen. He's asked me a couple of times what would happen if the surgery didn't go well. I just tell him that we don't have to worry about that, the surgery will go fine. I guess I'm not up for that discussion yet.

 

[scrappy47]

I was diagnosed with BAV at age 8 and read my own medical journals (dad was a cardiologist and I had access to his library) to understand it all. It terrified me that my mom chose the approach NOT to talk about it with me. My imagination ran away with me and I STOPPED telling anyone about my symptoms for fear that my active life would be restricted. If I were a parent of a child with this problem, I would be calm, caring, available, and discuss matters as age appropriate with your child based on expert advice. I would TALK about it as something completely fixable and for whom many people lead perfectly normal lives. I would NOT recommend avoiding the topic with a child at age 7 or 8. NO WAY.