Kiddy heart probs
Discussion
The smallest PHer in my family is just coming up to 4 months old and yesterday was diagnosed with a narrowing around the pulmonary valve which is likely to require treatment by balloon dilation.
From what I can make out, this treatment has been fairly commonplace since the mid-eighties and is obviously preferable to major surgery. Nonetheless, when you look at such a tiny body you can’t help equating small with fragile and end up worrying.
Has anyone had this with any of their kids who are now perfectly OK afterwards and are thus in a position to offer any words of assurance (please)?
From what I can make out, this treatment has been fairly commonplace since the mid-eighties and is obviously preferable to major surgery. Nonetheless, when you look at such a tiny body you can’t help equating small with fragile and end up worrying.
Has anyone had this with any of their kids who are now perfectly OK afterwards and are thus in a position to offer any words of assurance (please)?
I don't have kids but a close friend's baby had a hole in his heart and when he was 8 weeks old had to have it fixed (don't know the medical stuff about it..) He was very poorly from birth (apparently it was a huge hole) but now they have the most gorgeous little two year old - all bouncy and happy and not a complication or defect in sight - the perfect little man.
I'm sure everything will be ok - it'll all be back to normal before you know it.
I'm sure everything will be ok - it'll all be back to normal before you know it.
My nephew was born with, basically, half a heart.
He had MASSIVE emergency heart plumbing surgery as a four month old...and will require another op when he gets to four years or so.
But he's two and half now and doing just fine. A normal little boy who's a total PITA when he gets near my TV.
They *can* achieve miracles, mate. Your wee one needs something significantly less invasive - and, barring vanishingly unlikely bad luck, will get through it NO PROBLEM.
Best of luck.
He had MASSIVE emergency heart plumbing surgery as a four month old...and will require another op when he gets to four years or so.
But he's two and half now and doing just fine. A normal little boy who's a total PITA when he gets near my TV.
They *can* achieve miracles, mate. Your wee one needs something significantly less invasive - and, barring vanishingly unlikely bad luck, will get through it NO PROBLEM.
Best of luck.
No experience mate, but speaking as a dad myself just wanted to add a "Hope everything is OK"
No matter how much we bleat about our health service I find that the people who do the jobs within it are first rate professionals, just not enough of them due to all the management and red tape.
The little one will be in some of the best hands in the world and I'm sure will be just fine
No matter how much we bleat about our health service I find that the people who do the jobs within it are first rate professionals, just not enough of them due to all the management and red tape.
The little one will be in some of the best hands in the world and I'm sure will be just fine
daver said:
The smallest PHer in my family is just coming up to 4 months old and yesterday was diagnosed with a narrowing around the pulmonary valve which is likely to require treatment by balloon dilation.
From what I can make out, this treatment has been fairly commonplace since the mid-eighties and is obviously preferable to major surgery. Nonetheless, when you look at such a tiny body you can’t help equating small with fragile and end up worrying.
Has anyone had this with any of their kids who are now perfectly OK afterwards and are thus in a position to offer any words of assurance (please)?
The British Hear tFoundation has information - try HERE
Basically the valve is narrowed by not developing properly, and sometimes the muscular part of the heart just below the valve is also thickened. It's called congenital pulmonary stenosis, and is easily treatable using the baloon dilatation. As long as it's the only anomaly, everything should be fine.
Can't help with the procedure but my nephew had open heart surgery at 4 years old. He is now coming up 19 years old, the best part of 6ft (which is pretty impressive in a family of short arses!) and is usually found in the company of a different stunning blonde each week. He has some residual imune weakness and has to be careful of infections but all in all he is a normal fit 18 year old.
As an aside, he did a nice line in telling his friends that the scar was a shark bite from being attacked in some exotic ocean!!
Good luck and fingers crossed for your little 'un.
As an aside, he did a nice line in telling his friends that the scar was a shark bite from being attacked in some exotic ocean!!
Good luck and fingers crossed for your little 'un.
Daver, Sorry to hear this, I know what it's like for you, my youngest Son (4 yrs) has a serious Heart Condition and has had several 'Procedures' done, including 2 open-heart surgeries, the first at 7 days old (followed with a month in ICU).
He has also had treatment by Catheter on 2 occasions, including Balloon dilation and whilst it is of course worrying (especially if it's the first time) we have had positive experiences with it; - In Hospital the day before for observation and to ensure the right food/drink before etc, procedure done next day under general anaesthetic (worst part is leaving them in the pre-op room as they go under the anaesthetic) a few hours to get over the anaesthetic and then usally stay in overnight just to be sure they have no problems, especially if they go in through a main Artery as opposed to a vein, home next day.
In the past I have criticised the NHS but I have to say our experience of the NHS care for our son has been spot on, the quality of care has been second to none, in fact many patients come from all over the world to the UK for pediatric cardiac care because of this, the surgical procedures that our son has had are only performed in a few Hospitals in the UK and hardly any at all in mainland Europe, so it was strange to see Germans, French etc families in Hospital (Birmingham Childrens Hospital) for their kids to have surgery that could not be performed in their countries - countries that have, by many accounts, 'better' Medical care than the UK.
We were actually at Hospital yesterday for a check-up and to arrange for his next surgery (his condition requires a 3-stage surgery to make the best of his condition) and we are now looking at surgery to be sheduled for around april/may 2006, What Hospital will you be going to?
Feel free to ask anything, email me through profile if you want, I'll be happy to answer any questions/concerns if I can, by phone if you want. I am not an expert but have got 4 years of 'in-at-the-deep-end' experience of Heart problems with a young child and I know that when we first started down this route (when our son was 5 days old) we could have done with more information, it's not an easy road to travel but not neccessarily as hard as you may think and there are many different support groups that can offer useful and friendly advice.
He has also had treatment by Catheter on 2 occasions, including Balloon dilation and whilst it is of course worrying (especially if it's the first time) we have had positive experiences with it; - In Hospital the day before for observation and to ensure the right food/drink before etc, procedure done next day under general anaesthetic (worst part is leaving them in the pre-op room as they go under the anaesthetic) a few hours to get over the anaesthetic and then usally stay in overnight just to be sure they have no problems, especially if they go in through a main Artery as opposed to a vein, home next day.
In the past I have criticised the NHS but I have to say our experience of the NHS care for our son has been spot on, the quality of care has been second to none, in fact many patients come from all over the world to the UK for pediatric cardiac care because of this, the surgical procedures that our son has had are only performed in a few Hospitals in the UK and hardly any at all in mainland Europe, so it was strange to see Germans, French etc families in Hospital (Birmingham Childrens Hospital) for their kids to have surgery that could not be performed in their countries - countries that have, by many accounts, 'better' Medical care than the UK.
We were actually at Hospital yesterday for a check-up and to arrange for his next surgery (his condition requires a 3-stage surgery to make the best of his condition) and we are now looking at surgery to be sheduled for around april/may 2006, What Hospital will you be going to?
Feel free to ask anything, email me through profile if you want, I'll be happy to answer any questions/concerns if I can, by phone if you want. I am not an expert but have got 4 years of 'in-at-the-deep-end' experience of Heart problems with a young child and I know that when we first started down this route (when our son was 5 days old) we could have done with more information, it's not an easy road to travel but not neccessarily as hard as you may think and there are many different support groups that can offer useful and friendly advice.
daver said:
Some of you and your families have obviously experienced a lot worse than us
That might be true, but as you said earlier these things really bring home to you just how much fragility there is in your life. But you carry on without paying it much attention until something like this comes along. It's obviously very important to you and right now, that's what matters. So good luck and best wishes. You'll soon be looking back on this thinking - phew, that's over so lets have a beer!
littlegreenfairy said:
I don't have kids but a close friend's baby had a hole in his heart and when he was 8 weeks old had to have it fixed (don't know the medical stuff about it..) He was very poorly from birth (apparently it was a huge hole) but now they have the most gorgeous little two year old - all bouncy and happy and not a complication or defect in sight - the perfect little man.
I'm sure everything will be ok - it'll all be back to normal before you know it.
Again, I just wanted to say, Dave, that one of my friends has a boy who had multiple holes in his heart from birth and by all accounts he shouldn't be here today, however, he is a thriving, happy and bouncy 6 year old who leads a normal life.
I won't say don't worry because as parents that's what we will do for the rest of our lives, but try to remain as positive as you can and look to a bright future full of toddler tantrums and teenage turmoil (and the years inbetween aren't much better!).
Best wishes.
Yes catso have had experience of this condition but it wasn't a good outcome.Nothing to do with the surgeons skills etc but a very rare complication very unique so not to panic others who's children need this type of procedure or others like it ie the fontan which I understand is used for other heart conditions.We only got to stage one.
Sorry to hear that BSA 500, as you say this condition is particularly serious and the outcome is not always good, we have had problems but have also been lucky and so far doing OK, fortunately it is a rare condition which is why I wondered how you'd heard of it, many Doctors we meet don't even know anything about it.
Life can be cruel sometimes and it can be hard to get through, but it's taught us a valuable lesson of living for today - because life is precious and that is what really matters.
Our thoughts are with you.
Life can be cruel sometimes and it can be hard to get through, but it's taught us a valuable lesson of living for today - because life is precious and that is what really matters.
Our thoughts are with you.
Reading about the condition is frightening enough but, when it's your own child, it must be very worrying.
I said earlier that I didn't think that the stent bit was major surgery in itself but, in all honesty, you must be going through hell with all this.
Fingers, toes and eyes crossed that it will be alright for you.
I said earlier that I didn't think that the stent bit was major surgery in itself but, in all honesty, you must be going through hell with all this.
Fingers, toes and eyes crossed that it will be alright for you.
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