Sophies's mum and dad Sarah and Les sent their story to Left Heart Matters.

Sophie was diagnosed HPLH at Sarah's 21 week scan. It was devastating news but we were given the life-line of the Norwood procedure at Guy's hospital, London. We already have two healthy girls but that did'nt seem to make this any easier to come to terms with.

Sarah was induced at 39 weeks and Sophie was born at 17:27 on 27th May 1997. She seemed a perfect baby and it was hard to believe her heart could be so mal-formed. There were some very worrying times in the 24-48 hours after surgery for various reasons but as time went on Sophie became stronger and stronger. Sarah left hospital with Sophie about 3 weeks after birth.

The only significant problem we had after getting Sophie home was her scar not wanting to heal properly. After a course of antibiotics it did.

We are now over 6 months down the line and on Monday 15th December we are due to take Sophie back to Guys for a cardiac catheterisation. Even though we know this is supposedly fairly routine we are concerned about her having a general anaesthetic and having this done.

We do not yet know when the stage II operation will be performed, initially we were told it was likely to be within the first 6 months, now it seems this will be within the first year. In a recent trip to Guy's it was disclosed that they are reviewing the need for the third stage operation, although at present it is still being performed as standard. Even though the risk associated with this is far lower than that associated with Stage I, the way we look at it is - if it's not necessary don't do it.

One of the topics Sarah and I discuss is that of possible causes. As far as we are aware there is no history of this condition on either side of the family. We are told it is likely to be a genetic thing that is triggered by 'something'. I wonder what that something could be ? Sarah had a flu type virus in early pregnancy and that's about the only thing we can think of. We are both healthy, do not smoke and certainly do not drink to excess and Sarah never drinks when pregnant. I guess we always look for reasons but we accept that we may never know.

As you will see from the photograph Sophie is a happy little soul and we love her dearly. We thank all those at Guy's for helping to make this possible so far. We pray this will continue.

Sarah and Les Green