Ran into another OHS survivor

[Martin_W_Riley]

I went to a "road hockey birthday party" this weekend. My eldest son (9yrs) was invited and on the invitation it said to "bring brothers and fathers too..." And so, my youngest (4yrs - but he's BIG) and I went as well to play.

While we were there I noticed a chineese kid playing and he was quite good.

During the reception afterwards, I mentioned that I had OHS two months ago (...ok - a cheap attempt to explain my poor performance during the 90min game to the other adults who had played...) and I was told that the young chineese kid I had seen on the field also had OHS. But he had it when he was 4.

They brought him over and we compared scars. He explained to us that he had to have a valve repaired in China before the Canadian government would allow his adoption. It was a touching story and I nearly cried because just I can't imagine a 4 year old child going through OHS.

Anyhow, it was my first encounter with another OHS survivor outside of the hospital and I was touched.

Cheers

Martin

 

[gijanet]

Okay, what about a three year old then?

Okay, what about a three year old then?

Well, if the thought of a four year old undergoing OHS makes you cry, what about a three year old who has had three? Well, to be truthful, only her last one was truly open heart...........that's okay..........makes me cry all too frequently, too.

I am glad to hear that the little boy is doing well. I know of several Chinese children who have been adopted here in the U.S., and they have had to undergo further surgeries in an attempt to try and repair the botched up jobs that were performed in their homeland. If you see his parents again, and they are interested in an online pediatric congenital heart group, please feel free to give me a shout, or they can go to www.tchin.org .

On another note, I am also glad to hear that you are up to a 90 minute game of road hockey just two months out from your open heart. That is no small feat for any adult, much less one who is recovering from surgery. Good luck on your continued recovery.

Take care and God bless..............

 

[Abbanabba]

I had my first surgery at 18 months and my OHS at 5. While I probably had much better conditions to those available in China, as an adult I really don't remember much of it at all. I remember going in to the OT, a vague memory of being strapped into the bed from shoulder to knees (..I had somehow opened my stitches, so they strapped me down for my own protection..), all the grown ups that had to hold me down to administer the foul tasting medicine, and playing with the kid in the bed next to me (..Noddy Felt Figures..).

I don't remember any of the pain, or ICU, or much else. I know my first grade teacher made quite a fuss of me, but I don't remember missing much school, or not being able to do much afterward. It really is amazing how resiliant we are as kids.

Cheers
Anna : )

 

[Harpoon]

First surgery, OHS, was at less than 3 months...


Yesterday I was up to see my cardiologist and he had me get an echo. he had a couple of resident "shadows" along and was giving them a whole bunch of information on what had happened to be with the first OHS, being put on ice and how the TGV was fixed.

Then he went into how Dr. Mustard's repair for TGV often lead to valve problems later in life, just like what happened to me...

Was rather interesting to listen to him talk like that. Kind of wish I had a real chance to sit down with the guy over coffee or something and just chat about my heart condition.


Back on topic. There's a little girl here in town (I think she'd be about 4 or so now) who has the same condition I have along with the associated package of birth defects. I bump into her and her parents every once in a while. First met them during a pie auction at a local arts and crafts festival, it was fund raiser for her and her family.

My advice to them then (before my valve tanked) and now to anyone who's got a child (or is a child) with a heart condition is not to let it stop you from doing anything.

The more active a kid with a heart condition can be, the better. Eat right, develope STRONG, healthy habits, and keep with it.

And if you're a parent of a child with a heart defect, let them run and find their own limitations. No child is going to run themselves so hard their heart fails, there's an inborn survival mechanism that prevents that, just like it would prevent you from bashing your own head up against a tree until you crushed your own skull.

You just can't do that willingly.

Kids are smart and they'll stop when they need to and don't need you telling them to slow down for them. =)



Kids with CHD's are pretty special. ANY child with a "mortal" defect or illness like that is special and they grow up to be pretty well grounded, more so than the "average" teenager (and older) anyways...

 

[Abbanabba]

I just got all the medical notes from my original surgery, which I have never read before - and wow! - even I feel sorry for the little girl I was.

Sounds like I went through hell before my reparative surgery and had a number of complications post-op. Boy, am I glad I can't remember any of that!!!!

A : )