HLHS absolutely heartbreaking

[Redfluffball]

Hello, new in here so trying get my bearings where things are, posted in Pregnancy but someone adviced me to post on here 😊.

I've been to womens hospital (UK) at fetal medicine department and the news are heartbreaking something as new parents did not expect to hear. Our baby have hypoplastic left heart syndrome with means will need 3 operation as soon as it's born, then around 6months old and another one at 5 years of age and constantly have hospital routines and be on medication for rest of their life. This is my fisrt baby and currently 23weeks l, we decided to continue the pregnancy and we are fully aware that it's not going to be easy. We going to fight till the end and we not gonna give up. Hope, faith, love. My question is to anyone who's dealing with HLHS what to expect? Is there any stories would you like to share with me, I would love to hear anything and learn. We not sure why this happen or how as nobody in my family or my partner family have any genetic heart problems so not sure where the problems is. Thank you 💐

Hi, I am so sorry that you are going through this incredibly tough time. I am thinking of you and your baby. My baby was born with a CHD, not HLHS but they have had surgery and will require more in the future. I remember how anxious and overwhelmed I felt when I found out during the pregnancy so I really do feel for you. It is very scary. I know you asked to hear from people who have experience of HLHS and I don't have that but if you wanted to ask me anything please feel free to send me a message. Congratulations on your pregnancy, sending big hugs x

Hi OP, how very worrying for you- I’d recommend the charity Little Hearts Matter as they have loads of info and support for families with children with a single ventricle heart condition x