Hypoplastic Left Heart Syndrome

 my daughter is 23 weeks pregnant and at her 20 week scan at hereford hosp they said she must go to birmingham as it looks like something wrong with babys heart, there they confirmed baby has hlhs we had never heard of it before it is so distressing, babys a little girl and will be her fourth child, they said about termination but she couldnt consider that feeling baby kick already, they said chances of survival 75% so were trying to be positive

we still learning more about it and its lovely to hear your daughter is doing well, its so rare here in uk most websites are in usa

my daughter is going back to birmingham for her 28week scan where she get all her questions answered it still hard to sink in as you know, she is 2 hours drive from birmingham hosp which is a worry too :(

Hi

I have no experience of this condition but I read your post and just wanted to say I was sorry to hear of the difficult time your daughter is having.  I wish your daughter lots of luck and I hope her little one arrives as healthy as possible. 

Kitty 

 hi my son is 6 months old with hypoplastic left heart, i found out what was wrong with him at leeds when i was 24 weeks pregnant he was born on the 5th of march at leeds and transferd 2 birmingham childrens hosp at 4 days old where they did the stage 1 norwood, they are absolutly brilliant at birmingham, at leeds they wernt very positive but we got 2 birmingham and they were so positive about everythin since his first op he was in hosp about 7 weeks because he needed oxygen and we had to get it sorted for him to come home on it, but hes been off it nearly 3months now, he was very small when he was born only weighing 4'5....leeds told us that they spoke 2 london and they said they dont have any survives under 5'2,....but when we went 2 birmingham they said they had a better reputation then london...steven is goin back to birmingham on sunday 13th november for his stage 2 glenn on monday morning...we are also a 2 hour drive away from birmingham and it is very stressful...but there is so much they can do,stay positive they really are little fighters xxxx

 Hi,

We have just returned from hospital where we have been told that our baby who is 21 weeks also has HLHS.

We have spent the afternoon trying to undertand the condition and researching as much as we can.  What suprises me is the few UK website relating to this condition, there doesnt' seem to be much support.

I just wondered if you could recommend any other sites in the UK that would give us more information or any parent support groups that could help answer some of the questions we have.

Your little girl has given me so much hope!  when I left the hospital today, I honestly felt there was no hope for our little one, thank you so much and I hope and pray she continues to keep well.

x

Hi,

I recommend you visit the Little Hearts Matter website at lhm.org.uk

Best of luck.

Raul