Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Saturday, 19 January 2013

Jessica makes her stage debut




Jessica made her stage debut this afternoon in ‘You’ve Gotta Have Heart’ – our fundraising concert for Friends of PICU.  She came on stage briefly for a poem written by Alan, one of the performers in the concert and then in the finale for ‘When You Believe’ (there can be miracles… when you believe) She has coped so well with all the rehearsing today and with the performance and was just delightful when lots of our audience came up to say hello to her after the show, bless her.  Thank you so much to everyone who braved the snow to come and see the concert and to all our friends and family who performed in the show or helped out behind the scenes – we have raised around £560 for Friends of PICU which is fabulous.


Jessica had her first trip to the hairdressers earlier in the week although wasn’t quite so impressed about having her hair cut!  Nor has she been particularly impressed by the snow over the last couple of days – we took her out in the garden and whilst we did manage to get a couple of photos with a half-smile, she didn’t seem to particularly enjoy the experience!


Another tooth has appeared this week so we are now up to seven teeth.  The last few weeks have seen quite a lot of disturbed nights with the combination of teething, colds and chestiness but hopefully we’ll start getting some good nights soon!  Jessica seems to be much better from a winter bugs point of view at the moment which is great.

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2 comments:

  1. Anonymous8 February 2013 at 10:55

    Hello,
    We stumbled across your lovely blog through a twitter link. We're HLHS parents-to-be and our little one is also under PAH / Ocean Ward. Big thank you for sharing your story - its fantastic to see Jessica do so well.
    Freya

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    1. Louise8 February 2013 at 21:12

      Hello Freya - thank you for stopping by and your lovely comment. I hope all is going well with you at the moment - it is a very uncertain time waiting for your little one to arrive when you have had a diagnosis of HLHS - I remember it all very well! Your little one will have fabulous care at PAH and Ocean Ward - the team there are wonderful and you will get so much support from the other heart parents that you meet on the ward. I will hold you and your family in my prayers over the coming weeks and really hope that all will go well when your little one arrives.

      Louise x

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