Heart Conditions

[sandy25]

7yr old ds with heart problems from birth, anyone else out there?

Hi Sandy 11 year old dd with significant heart disease, plus ds1 and ds2 both healthy.

How is your ds?

Had open Heart surgury last december, doing better but still has problems. ds2 ok, but has asthma, ss1 and 2 going great.

What was/is his defect Sandy?

Dd has ALCAPA (rare coronary artery anomaly), mitral regurg, pulmonary stenosis, and pulmonary valve regurg. She had surgery at 4 months following two heart attacks and collapse. On daily meds but doing OK. Which hospital are you with?

Luckly for ds1 he was only born with VSD ( ventrical septal defect) but after surgury to correct this and his leaking vaulve, he now has residual vsd and weakend vaulve and slight diastolic disfunction. No meds since came of fluid tablet after surgury. Had surgury at Melbourne Childrens hospital in australia. Am member of a support group so i know what most of your Dds conditions are, thats not real good. Tell her to keep her chin up, she is one of the special ones.. thats what i tell ds1 when he gets down about being "different"

Dd has done really well considering they were considering transplant when she was tiny. And thankfully only the one open heart so far plus a few cardiac catheters.

Is your ds feeling pretty fed-up at the moment? Surgery at an older age must be pretty shocking for them (and you too!) I'm hoping we will be able to avoid more for a while yet. There is a good UK based message board at www.Heartline.org.uk, you'd be welcome there if you feel the need for more support.

He's not so bad now, but after surgury, when he could not do anything for weeks on end, he was bored silly(took quite a while for his ribs to heal properly, try to explain that to a 7yr old!!). back on his push bike now (thank god) and loving it. surgury at seven was ok, at least i could prepare him, and lets face it, it was no picnic for me but we must be strong for our kids. I couldn't let him see me being a blubbering mess. He was soooo brave though, i could not get over it, still can,t. He did not break down and really cry once. he had a few tears when he woke up with ventolator in but after that was out he was a real trouper. i was really proud of him.

That must have been a real tough time for you and your ds Sandy. I just don't know how I'd cope with all that. Your ds sounds a really brave boy. Ecxellent that he's off his medication, Is he likely to encounter further problems as he gets older?

My 5 year old ds has a 50% chance of developing hypertrophic cardiomyopathy. He's going to be checked again in January at Great Ormond Street, and I'm already becoming nervous and anxious about it.

Correct me if I'm wrong but is VSD an actual hole in the septum? Has he had previous surgery?

Macwoozy my son has just been tested for hypertrophic cardiomyopathy he had a chance of having it as it runs in my dp's family and family members have lost there lives to it.

He was checked last week and all was ok but he does have to be checked once a yr from now on

Why a 50% chance for your ds? I was never given a percentage! do yourself or partner have it?

I hope your ds is ok and you get the outcome you want.

Sandy you sound like a very stong women and i hope your ds is ok he sounds like a very very brave boy it must have been heart breaking going through that for both of you

AngelCakeUmm, I bet you were relieved last week, to say the least. Isn't that one of the most tensive moments waiting to find out if your ds has developed it or not. Do you think about it alot? How old is your ds?

Yes I have the condition, and its a 50:50 chance of passing it on from parent to child. Has your dp got the condition?

Hello to all the other heart children
My dd (4 in June) also had a VSD. It was repaired December 2002, and she is doing well

Hi im back, had busy day... yes a vsd is a hole in the septum, ds1 has his near his vaulve wich is not good but he's a trouper. it was no picnic going through open heart surgury but we had lots of love and support from our family.

Just like to give you all some hope,my dd2 had a vsd it was found when see was about 10mths,took her back for her check up 12mths later and it had disappeared which was a huge relief.She's now 2.5yrs old and more than fine.

ds1's hole was supposed to close. the dr says most of them do, guess we just werent that luck... wonderful that your dd2 is doing great, always love to hear about heartkids that are doing a-o.k.!!

when dd's VSD was diagnosed we were told it was only tiny and would close and even if it didn't she would never have any problems and would never need surgery

Then when she saw a paediatric cardiologist (she had only seen a normal paediatrician before) when she was 6 months, we were told she needed further tests to find out how much of an effect her VSD was having on her becuase even though she seemed to be coping, there were subtle signs that her heart was working too hard. At 10 months she had a cardiac catheter (probe up femoral artery) to measure the pressures in her heart. This showed there was far too much blood going to her lungs and that she needed surgery before she was two to prevent permanent lung damage. Her VSD was now classified as "moderate"

After 7 months on the waiting list she had surgery. Luckily for us she had a straight forward operation and recovery. The surgeon told us her VSD was actually "quite large". we were told she was just lucky that she coped with it so well, another baby could have had a hole the same size, but presented with serious problems.
All dd had was fast breathing which gave her a funny shaped chest, and she was a bit skinny!

Thanks for listening If you want to see a picture I posted one on member profiles

Aaaww they look brill Wallace. Glad dd is doing so well!

They are beautiful... glad hers was fixe early, thats why myds is having extra probs now, as in his weakened vaulve, because his heart was let to work too hard for too long... he was a skinny baby too. and looked funny in the chest when he breathed, especially when feeding, which he did EVERY 2 hours seven days a week 24 hours a day for the first twelve months. i forgot what sleep was...(grin) will put up some photos if i can work out how...bit new at this computer stuff.

my dd also had a VSD & PDA, both were done via open heart when she was 7 weeks old. She didn't really have a wall between her ventricles so was in a bit of a sorry state beforehand. Took a long time to recover due to complications but all is well now, no murmur and she's been put on 5-yearly check-ups.
It was such a difficult time - so glad it's all behind us.

How old is your dd now? must be nice to hear a heart that goes thumpthump instead of whooshwhoosh, dd1 says his is like a washing machine

hi sandy she's 4.

Gosh sandy that was a lot of hard work feeding. Why did they leave him for so long?
I know exactly what you mean about the heart noise. After my dd first had surgery I actually missed that whooshwhoosh noise! But it is so nice to hear the thumpthump now.

We are on 3 yearly checkups. The last one was 6 months post op, so she is due another one June 2006 (can you tell I am dreading it already!)

Thank you everyone for admiring my two little darlings

Hello to all the 'hearty' mums.

Sandy - Dd says hers makes a 'swishy swashy' noise . If she's unwell you can 'feel' the murmer when you put your hand on her chest.....it's a really weird sensation.

Thats just reminded me about feeling dd's murmur! If you put your hand on her chest it was like a cat purring!

dd1 born with complete Atrial venticular Septal Defect - leaky AV valve. Had two open heart surgeries at 8 weeks old. now almost 3 - except for scar - no sign she has this. We have annual check ups just to keep an eye on the valve. May need surgery when she is a teenager to further repair the valve.

We had some setbacks and she spent 3 weeks in hospital in London but once home recovered quite easily although we did not have to try and keep her quiet as you did sandy.

Sandy - when did they discover your ds's heart problem?

Dd was pump fed overnight so I only had to get up to do the meds. It was lovely to get a break from those 2 hourly feeds. How did you manage that for a whole year?

Sorry girls, had to get dinner and put boys to bed.... d1's hole found at 7 weeks but they wanted to leave it to see if it would close... they monitored him as out patient for 6 and a half years when they finally took some notice of me saying that he was getting too tierd after school for a six year old. thats when they found his leaking vaulve... god was i none too impressed with that!!! he had surgury on the 7 of december last year.please god i never have to go through that again.although there is talk of a vaulve transplant later if his weakens any more it wasnt just the surgury that was hard, i had to leave my other son behind with my dp as he was still in school.not an easy task,as for feeding 2 hourly for 7 months,we all do what we gotta do,after all its only sleep right.who really needs it....