HLHS - Hypoplastic Left Heart Syndome

[MkyaB]

Hi all,

Having just found out my unborn baby has this heart defect, I'm trying to explore and understand everything I can about her condition. It's extremely sad news to have been given and with the few options I have, I'm wandering if anyone on here has children or has themselves, this diagnosis, and would be happy to talk about this.

Thank you so much, it would mean a lot to hear from someone with knowledge already.

[Milkfairy Heart Star]

Hi MkyaB

I am so sorry to read your post about your unborn baby.

It must have been such a shock to receive this news.

You may find some support from Tiny Tickers

tinytickers.org/

[MARION7]

I hope someone is able to advise, support and comfort you soon.

Thinking of you and baby.

xx

[Fortepiano]

There are only a very few people who have posted here about their children's heart conditions -it's basically an adult forum. Jellybelly2016 has a 3 year old with HLHS, and Nanny72 has a 23 year old granddaughter. Joannar2016 posted in the same situation as you. You could try sending them a private message.

I think the most likely place to find UK forums are closed Facebook groups, e.g. the one run by Heartline families heartline.org.uk/aboutheart...

You probably know Little Hearts Matter which is the charity for HLHS lhm.org.uk. They have a facebook chat site for members and a support phoneline.

The charity AnteNatal Results and Choices arc-uk.org/ also supports women who are faced with these terribly painful situations.

I'm so sorry you are faced with this and hope you find the support you need.