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Hyperplastic left heart syndrome confirmed at 21 weeks

6 replies

user1485778793 · 22/02/2017 23:51

I'm devastated. I've just had the above confirmed after a detailed ultrasound scan. Does anyone have any experience of this? I've scoured the net and read as much as possible but would like to speak to people who have practical experience of the condition.

Also does anyone know about getting referral to another hospital. I'm now supposed to deliver at LGI but I'd prefer Birmingham as they seem to have a better reputation for the surgeries the baby would need. Is it even possible to go to a different hospital to give birth?

Thanks

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Littlebelina · 23/02/2017 07:58

Little heart matters specialise in single ventricle heart condition support and have a helpline. They might be able to put you in touch with some parents and advise on the hospital.

Really sorry to hear this. Was on your other thread and was keeping my fingers crossed for you that it would turn out to be a more minor condition.

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SockQueen · 23/02/2017 09:58

I have a friend whose son has this - he's almost 2 now and is a gorgeous little boy! He's had his first two operations (at Birmingham, she can't praise them enough) but still has a long road ahead of him. You can ask to be transferred to a different hospital, but do bear in mind that as well as inpatient stays for operations, you will have to go for lots of follow-up appointments etc, so need to think of those practicalities as well. Second the suggestion of contacting Little Hearts Matter.

Sending you and lots of good wishes for you and your baby.

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element19 · 23/02/2017 10:14

Hello OP. I have recent experience of this and can certainly hold your hand through the coming weeks and offer practical advice if you'd like to DM me. However I must make you aware that we only got to experience the first operation. I can empathasise with how you are feeling right now and sending you hugs

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user1485778793 · 23/02/2017 10:50

Hi, thanks for replies. I've spoken to little hearts matter, they were really nice and are getting someone to ring me later.

They've said that the left side of the babies heart is larger whereas normally they are under developed which makes me think why can't they still use those chambers if they are big enough?

I don't mind travelling for the right treatment.

Element19 how do I dm you?

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elpinguino · 23/02/2017 10:57

Can you ask to meet the children's cardiology team and surgeon to get more information and hopefully reassurance regarding the local expertise? Sorry I have no personal experience of this condition but I used to work in leeds children's hospital and the team there seemed very good. As far as your question above, I understand that the size of the chambers isn't the only concern it's how effectively the muscle works - in adults with hypertrophy of a heart ventricle, the pump doesn't work as well because the muscle is too thick. I agree with pp that there can be lots of follow up etc needed and its always helpful to have local support even if you were to decide to have the neonatal care elsewhere. Best wishes for you and your little one.

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element19 · 23/02/2017 11:06

If you are on a phone then there should be 3 dots at the end of my post and you can message me from within there