Hey there, my son has the same condition TOF with PA and severe pulmonary stenosis. He's 6 months old and had his first open heart 5 days after birth. I didn't realise before we went to hospital how many non-heart complications other heart babies have - I never thought I'd be sat in a childrens heart ward, with my very poorly child, feeling outright lucky. I'm sorry to hear that you've had to go through all this - nobody deserves it.
I'm interested as to how you and your parents handled it growing up? We are still adjusting to the realities of our new life and I'm curious as to when you started to understand what was going on? When did your parents have the "So, you would've died without medical intervention" talk?
How do you feel about your scars? I so hope I can bring up my son feeling positive about them, but I remember how tough it was being a teen.
Thank you for posting :) P.S, check my history if you want a small (I didn't post much for obvious reasons) snapshot into what it's like as a parent! This is my throwaway, so it's all there.
bloodynervous40 karma
Hey there, my son has the same condition TOF with PA and severe pulmonary stenosis. He's 6 months old and had his first open heart 5 days after birth. I didn't realise before we went to hospital how many non-heart complications other heart babies have - I never thought I'd be sat in a childrens heart ward, with my very poorly child, feeling outright lucky. I'm sorry to hear that you've had to go through all this - nobody deserves it.
I'm interested as to how you and your parents handled it growing up? We are still adjusting to the realities of our new life and I'm curious as to when you started to understand what was going on? When did your parents have the "So, you would've died without medical intervention" talk?
How do you feel about your scars? I so hope I can bring up my son feeling positive about them, but I remember how tough it was being a teen.
Thank you for posting :) P.S, check my history if you want a small (I didn't post much for obvious reasons) snapshot into what it's like as a parent! This is my throwaway, so it's all there.
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