22 weeks pregnant and son been diagnosed with hypoplastic left heart syndrome

[Joannar86]

Hi, im looking for someone who has been in the same situation or even living with the condition to help put my mind at ease. I dont fully understand the diagnosis my son has been given and googling doesnt help.

At my 20 week scan my son was diagnosed at the fetal medicine unit for suspectd complete avsd, then i was sent to southampton to see specialists. With this their scan concluded a much worse outcome for my unborn baby.

They have diagnosed him with having hypoplastic left heart syndrome with mitral atresia, a ventricular septal defect and hypoplasia of the aortic arch.

The medical names scare the life out of me which no guaranteed outcome for my son.

I am being hopeful there is someone out there that can help me and comfort that they themselves or their child or loved one has survived the above condition.

[laura_dropstitch Heart Star]

Hi, Joannar86. I don't really know what to say. I can only imagine how scary and difficult it is to deal with news like this. I'm not particularly knowledgeable about HLHS but I do follow (on Instagram) an amazing young woman who lives with the condition. You might like to read some of her posts - instagram.com/fragments_of_... She's from Germany so maybe some treatments etc are different, but she posts in English and is very positive, so hopefully there's something useful there for you.

I hope someone with a bit more knowledge than me can offer you some reassurance here soon. There were a couple of parents posting about their babies (with various conditions) on here a few months ago but I haven't seen any posts recently.

Sending lots of love to you and your family xxx

[Jellybelly2016]

Hello Joanna, it has been some time since your post. I hope everything is ok. I just wanted to say hello because my daughter age 3 has hlhs. Have you joined little hearts matter? They are a great source of information and support xx