Hello

[Julie121]

Hi my daughter has hypoplastic left heart syndrome we are lucky to have made it to this stage as we thought we were going to lose her so many times she had been in hospital for over 25 weeks she is HAPPY 1 year old now but we really struggle with weight gain,also her other side is not functioning properly wondering if any1 has been in the same boat

[Sina-6491]

Can't really help on advice for your beautiful little girls issues I'm afraid.

But I think you'll find you will get lots of replys of support tomorrow as this forum goes a little quiet at the weekends.

You and your family must be a your wits end right now, bless you.

I hope things start to improve for your little girl. Sending best wishes and hugs, Jo ☺

[Sonnysmummy2016]

Hi Julie

I can relate to everything. My little boy who is 9 months. Is hypoplast also but on the right side but he has pulmonary atresia and a few other things. I was also told 2 times he was never going to come home.

We also struggle with weight gain he had to take specialist supplements to gain weight.

He is now 9 months and at home. His left valve is very small to causing some issues there. I understand everything you are going through. My 10 year old daughter has set up an awareness page on Facebook. If you would like to see what struggles we have as son many mum's don't know this illnesses exsist.. which is so sad..because it affects so many..The only issue we have now is he is just 14lb on weight and trying to walk. Yet again something I was told may not happen. Due to his right side being weak.

Feel free to message anytime.

She is beautiful by the way

Nell x

[Hidden]

What a lovely pic! So happy that she's doing well

[JENN-]

My Emily has a complex congenital heart disease. She is 20 mth now 1 op done. She is 20 wk and just started wearing 12 to 18mth clothes . She was slow to put on weight as a baby but she got there slowly but surely . It was like slimming world when she ate really well the scales showed the opposite or she would have a massive poo before she was weighed 😂

[JENN- in reply to JENN-]

Sorry 20mth old not wks 😂

[Julie121 in reply to JENN-]

I sit there like come on we must me going up no stayed the same so frustrating as a mum cause every one says aww she is so cute how old is she 6 months and I go in to the hospital and they say we were hoping she would have gained a bit more than that it's like I am feeding her I'm trying everything but also so frustrating for me as well cause I fill like I'm at a forever battle x

[laura_dropstitch Heart Star]

Hi. Totally different situation, but my daughter was premature (delivered early because my heart failed while pregnant) so weight gain was an issue for her too and I remember the frustration of weigh-ins and the unhelpful comments when she hadn't gained as much as she "should" have. It's so tough when you are working so hard to look after them, doing everything you can for them and then it feels like all your efforts get shot down in flames. I couldn't help feeling responsible for the failures (as the health visitors seemed to see it) but never gave myself credit for the many successes. Looking back, I can see I was doing a bloody brilliant job, all things considered! I hope you are able to take a step back from the situation now and again and give yourself a big pat on the back for all you are doing, she certainly looks very happy with the life you are giving her. Lots of love x