I've just seen this. Sorry to hear about your little girl. It's hard to cope with isn't it. Especially when you have so many specialists and people giving you information.

My little boy has sluggish valves and thickening of the chamber walls. Ontop of this he has just been diagnosed as having a murmur. He also has a lung problem and a tissue disorder which is linked to the thickening of his chamber walls.

Oliver goes to Birmingham too and sees Dr Stumper and I am just waiting for his first appointment to see a genetisist in Brum too.

I agree about the rural doctors and many a time I've taken Oliver to the docs and they've reached for medical books.

I would like it so that Oliver didn't have to know and could lead a relatively normal childhood but because he has problems breathing and his valves don't open properly he will have to rest and isn't allowed to do any strenuous sport and have been told he won't beable to do athletics, football or anything like that at school so it will be obvious to him that he's different.

You do blame yourself, even though I've been assure that it's just one of those things and that the heart is such a complex muscle, things do sometimes go wrong when it is forming, you can't help but blame yourself. As a mother your job is to bring your baby into this world and when you do and there is a problem you feel responsible. Or as I said when I was sobbing in neonatal - I broke my baby.

If you ever want to chat please feel free to pm me, aidedhoney and I chat via pm. I know it helps me to off load some of the worries with someone who is going through a similar situation.


Hugs to your special girl x