anyone with a child with congenital heart disease

[garlicoliveoil]

hi all, thats it really, is there anyone out there who understands the sheer stress and heartbreak of this, sorry im feeling sad today

Ds1 is 9 and has transposition, Vsd and pulmonery stenosis, he had open heart surgery in jan this year but it failed and the surgeon couldnt perform what he needed to do and now hell need a heart transplant by his mid twenties, im slowly coming to terms with this but whats hard is trying to parent him and enforce rules on things that i know are for his own good but makes me feel a horrible mum for stopping him iyswim

he struggles with any physical activity even walking to school some mornings, he started drama class to give him something to do because he cant play football, ride bikes etc and now hes rehearsing for a show hes absoloutley shattered with headaches but i feel so unfair stopping him taking part even though i know he will be ill and he cant cope with it

sorry to ramble, im just feeling very sad today about it all

I'm sorry to hear that garlic, I'm sorry I have no experiance, hopefully someone will be along shortly who does.
take care x

garlicoliveoil - hello, I'm sorry you feel sad.

My dd has complex congenital heart disease; ALCAPA, supravalvar PS, mitral and tricuspid incompetence, RVOTO and LV dysfunction (previously DCM but not currently connsidered as such). She's replumbed but not repaired. She's 17 next week. Like your ds, dd struggles quite often and it's hard to watch.

Please come over to the message board at Heartline if you need support. Otherwise I'm happy to chat here.

I am so sorry to hear about your son garlicoliveoil.

Please don't take this the wrong way, as I can really empathise with your emotions and how hard it must be for him, and this may not be the positive reply you hoped for!

There is no easy way of saying this and you can do with it what you like, but I just wanted to share my experience as a parent to a beautiful little boy who had a serious heart condition that we were UNAWARE of - HOCM (Hypertrophic Cardiomyopathy). 4.5 years ago when he was 6 I dropped him off at school as normal, just over 2 hours later he suffered a major cardiac arrest that caused his heart to stop. To all intents and purposes he was dead, luckily for us our local air ambulance got to him in minutes and managed to get his heart started after some time and considerable efforts!

The sad part is that now my little boy (ok he's now 10 and not so little) has been left unable to see, talk, feed orally or move his arms and legs, he's also wheelchair dependant and doubly incontinent as he suffered a severe global brain injury. He does still smile, laugh and enjoys stories, books tv and films from before, and I can usually understand and read his moods and sounds, he is happier these days compared to early months following his heart attack and for that I am truly thankful and hopeful for more improvements.

I do hope you don't mind me saying this and don't think I am being insensitive, but it is sometimes very hard to know what to do in your situation and I am sure if we had been aware of jack's issues we would have struggled too, sadly we weren't, but now we constantly live with the consequences of not knowing!!!

I hope this has been of some help in helping you see the alternatives and why you need to be cautious. Happy to share more if you want, we have a website we set up in early days but it only really covers the first year. We were lucky as Jack is still here, we see loads of stories via CRY (Cardiac Risk in the Young) of children and young adults who aren't!!

Contact me if you want, I don't want to bombard or bother you if it's not appropriate.

Best wishes and good luck finding your way x

Hello

My son(14) has a complex heart condition which limits some of his day to day activities, but we've all learnt to adjust. We have always explained everything very clearly to him and he knows why it isn't a good idea to, for example, leap about on a trampoline or play rugby. This doesn't help, however, when he desperately wants to do something with his friends that DH and I think is too risky.

I haven't got any real advice, just a hand to hold. I would suggest that you talk to him about how he feels when he's starting to get tired and help him try to identify warning signs before he gets too exhausted.

Heartline's a good place to go too, as Saggarmakers says.

With love x

Hello

my son has HOCM too. we were lucky - we found out when he was a baby and he has been monitored and on medication ever since.

I almost went mad when he was younger with fear and anxiety - literally mad. I now deal with it by not thinking about it - I can't. I dread his cardiology appts with a passion and the fear of him approaching puberty and what might happen then paralyses me with fear.

I know it has affected how I parent him. people say I am too soft on him - I am thankful he is not a sporty child and positively encourage his DS obsession! I can't quite reconcile supporting him with boundries etc with the possibility that he wont see adulthood ( ihave struggled even putting that in writing)and therefore why can't he have anything and everything he wants.

I have never really put this down in writing before or shared it with others that are dealing with a similar experience. I am so sorry you are feeling sad but I am really thankful you told us. x

Hi,

I think to be worried and cautious is completely normal. As parents we do what we have to to protect our children from harm.

My little boy was born with complex heart issues ( in addition to any other complex issues). He had open heart surgery at 4 weeks old to repair Double Outlet right ventricle ( similar to transposition but not quite the same) ASD and a-typical VSD.

He has been really lucky in terms of his cardiac issues in that it is hoped that his heart is completely repaired. He is still reviewed regularly and has occasional bradycardic episodes but recently had a cardiac catheterisationa and full cardio check and all is well.

That said, even though we're told it's repaired, I do still worry about his heart, so I can imagine your conern must be huge compared to ours.

Sending lots of hugs xx

Hi thanks for all your kind words, im feeling a little better today, he seemed better yesterday after school so i actively encouraged him to play on his computer before tea which of course he loved so he ahd lots of rest.

SMBK- thanks, yes DS1 is replumbed but will never be repaired, its heartbreaking, i feel so sad for him and all his struggles,
Have you ever come to terms with your DD's heart problems and how did/does she cope now as a teenager knowing shes different from her peers, Ds is quite cyanosed and he has clubbed fingers and toes which do look different and i think hes just starting to notice this difference now hes getting older plus that he cant do what others do too
Ive just joined heartline yesterday so im still waiting for a moderator to activate my account so hopefully ill find lots of support on there over time,
thanks again and hopefully speak to you over on heartline

Wright469- im so sorry about your son, its so heartbreaking, were you totally unaware about your DS's heart problems before this happened?

Hellantha- thanks again, we try so hard to instill into him about his energy levels and breathlessness but he is so strong willed and he will just battle on and on then have a major headache and vomit, bless him,
I feel so awful telling him to stop chasing the dog or playing in the garden with his brothers when that is just what is normal for children and we struggle with so many family activities such as swimmimng and bike riding,
Have you any other children? how do you enforce rules about activities and exercise when your other children are full of energy and your heart child just wants to keep up and join in?

FND, I struggle with the fact that DS might not reach adult hood too and i do find it has altered my parenting towards him, i feel more guilty disciplining him over trivial issues such as leaving his bath towel on the floor when there are more important things happening to him but at the same time i dont want to bring him up to be lazy and rude iyswim

Shaz298- my ds heart problem was originally able to be corrected and he had a normal life expectancy and i only found out about him needing a heart tranplant in january this year so i suppose im still coming to terms with this and grieving over him

well this is a long post but thanks again for the kind words
i just feel hes been ill fo so long, he contracted septecemia in lanzarote in november 08 which developed into endocarditis and he was in hospital for three months recovering, god knows how i got through it, hes fully recovered from that infection now but it still scares me to death that it will happen again

Any others with children that have suffered with endocarditis as im aware its very rare

OP - That must be so hard for you. I do worry that something will go wrong with the repair or he'll grow out of his patch or something. Sending lots of 'be well' vibes to your little boy and hugs to you

xx

Hi

My DS does have brothers. We have always tried to set up activities that they all can do, but won't limit him too obviously. For example, if we go for a bike ride, we stop frequently to 'look at the view' or 'give mummy a rest'. His brothers have always been aware of his condition and were careful with him when they were all little. We have sometimes had to be quite frank with him about the possible consequences of over-exerting himself - he began to understand this at about 9, so hopefully your DS will too x

garlic - if you don't get activated shortly let me know your user name and I'll give admin a nudge.

dd has a really good attitude to her heart problem. She knows her limits but tends to push them a bit which means I have grey hair and bitten nails. She has had some tough times coping with the emotional stuff but is currently in a good place and long may it continue. I think her attitude helps me - she really 'lives' her life IYKWIM and just makes the best of what she has.

dd is on this video from last year. Several of the children on it have single ventricle conditions and will likely need transplants in the future. They've all had really tough times but it's lovely to see them enjoying each others company and doing stuff they never thought they'd be able to do. Try not to think too much of the future (it's hard) and make the best of today. x

Hi, I'm new here.
My son is coming up to 2. He was born with pulmonary atresia with VSD. He recently had surgery in December for a new BT shunt and is due for a repair at some point this year. Since surgery he has become very aggressive, has nightmares, clingy and very destructive. I know part of it is being traumatised by surgery but I know he is probably playing on it being a 2year old. It's hard for me to find a middle road with him. I hate disciplining him because it makes me feel guilty because he has CHD. But in some ways you just have to put the CHD to the back of your mind and deal with them like they are a healthy heart child. But I will never come to terms with my sons heart condition. You need to remember that heart surgery is always improving and myabe they will find something to improve your childs condition.

Endocarditis isn't too rare in heart patients and they need to do their best to prevent it by not having tattoos and brushing their teeth properly.