Hypoplastic left heart syndrome

[Emberfoot]

Heya, so my 22wk redo of my anomaly scan found our little baby has this. I know it's quite a rare condition so it may be futile asking, but anyone else in here got or ever had a baby with hlhs? I see the specialists in two days but that feels like a lifetime rn. Thanks. Also, please send hugs 🤗

I don't know I'm afraid OP but bumping for you in the hope that someone who does might see this.

Sending lots of hugs to you, when you see the specialist you will get some answers of what will likely occur following birth. In my experience depending on where you are in the country you will most likely need to see someone at GOSH during your pregnancy or wherever your specialist children’s hospital is. They will make a plan with you and it will probably be that little one will be transferred out.
Have a read of this, GOSH link into the BHF about this condition xx

www.bhf.org.uk/-/media/files/publications/children-and-young-people/c81117understandingyourchildshearthypoplastic-left-heart-syndromeweb.pdf

Thanks both, yes we have to travel to a specialist hospital, luckily not all the way to London (very south coast here) but we do have an appt Monday which is great, just feels like forever atm lol

Hello there, I read a blog written by an American woman called Meg McElwee, who gave birth to a boy with HLHS in 2011. He’s now nine .

blog.mamaliberated.com/sew_liberated/2011/03/welcoming-lachlan.html

She’s also on Instagram instagram.com/mamaliberated?igshid=6eytvuxrltnr

Her little boy is beautiful. I hope her words give you some comfort at this stressful time.

That's a lovely blog @WhaeaFire!