hypoplastic left heart syndrome hlhs

[mummyofthomas]

hi all,just wanted to post on here to see if anyone else on here has a child with hlhs,my son was diagnosed at 2 days old,he has had sucessful stage one & is having cathe next week,he is 9 weeks old today,would be really grateful of any replies as really don't know anyone else with this illness,had never heard of it until 9 weeks ago,thank u

Hi,
One of my daughters has a (different) heart condition but I have heard of HLHS. Have you seen Heartline? Forums and website.

Until just over 4 years ago I knew nothing about heart conditions - my daughter was diagnosed at 12 days old.

hi thanks snorris,i have not heard of this group before,it looks very helpful so thank you,i hope your daughter is doing well.i am still finding all this very hard to come to terms with,does it get any easier with time?

Hello snorris

Mummyofthomas - come on over to the Heartline message board - loads of experience over there of children with single ventricle conditions and a host of advice on feeding and stuff.

My daughter was diagnosed with her heart condition after suffering multiple organ failure at 4 months. It's a huge shock and a steep learning curve but it does get easier in time.

thanks saggarmakersbottomknocker i have joined now just waiting to be allowed on to forums etc
i hope ur daughter is doing well

thank you too bdaonion, its good to hear success stories of hlhs, sometimes looking online i seem to only find stories of doom and gloom and really struggle to keep positive for my little man, i hope ur friends daughter continues to do well

She's 16 now - doing really well despite a very rocky start I'll say hello to you over there once you've been approved - start an 'I'm new' thread. Might see you here some more too although I don't get on MN very often anymore.