r/HLHS

Just wondering how it worked out? I have HLHS and was thinking about this.

Any restrictions in your daily life or risks in having children?

I have a 3.5 year old with HLHS, and she is having her Fontan surgery at the end of the month.

We are flying across the country for the surgery - same hospital she had her first two surgeries and she has follow ups there. Our families live in that city, so it's always fun for her to see her cousins, aunts and uncles.

She knows we are going on a trip, and I've lightly mentioned it once (doctors are going to fix her heart so she can run faster). But I really don't know where to start to talk to her about this. She's a smart kid, she remembers everything that everyone says (we have to watch what we say, in that phase!) She'll put things together.

I just don't know when and what to say, how much to say. I want her to feel brave and confident.

Help!

Afternoon, for those HLHS that are into adulthood. What advice would you offer for parents who have a child with HLHS. My son is 10 and is doing well, however, there are times when we get little scares about his liver function etc. it’s easy to overreact and overthink about the negative possibilities or outcomes. It’s almost like having PTSD as a parent. I remind myself to focus on what I can and cannot control but easier said than done. I hope this makes sense. God bless