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.

Friday 30 June 2017

Back in limbo

Yesterday marked six years since the in-utero surgery that gave us hope for Jessica's survival. Six years on, I watched her and Sophie at the dress rehearsal for their ballet show and got a bit tearful. How amazing it is to be six years on and to see Jessica dancing on stage and living life to its fullest.


Jessica in her white tutu ready for her ballet show



Today I hit earth with a bump again at Jessica's cardiology check-up. As I had suspected, Jessica has lost weight since her last appointment. Her sats were also lower than they usually are. Our consultant has decided that she would like to discuss Jessica at the next team meeting and consider whether her Fontan needs to take place sooner rather than later.



Jessica's weight has been an ongoing concern over the last year or so. We have had brief periods of weight gain followed by weight loss and then small gains but it's mostly hovered just under 16kg. Energy-wise she's being doing well on the whole other than having a virus earlier this month which left her exhausted for a couple of weeks.




It seems we are back in limbo again, waiting for a plan and wondering whether we now have the next surgery looming on the horizon. The team meeting is a week on Monday so it will be a couple of weeks before we know more.

Jessica playing with a balloon dog at the hospital





It recently struck me again how perfect the timing of that very first surgery six years ago was and how everything just happened to be in place at exactly the right time. I suspect that if we were in the same situation today our journey would be quite a different one. I've been reminding myself that God's timing was perfect back then and to have faith that the next stage will also take place at the right time for Jessica. We will of course keep you updated as to what the plan is likely to be but any prayers for the next step on Jessica's journey would be very much appreciated.
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5 comments:

  1. Unknown30 June 2017 at 22:04

    We have our fingers crossed for Jessica, Louise - this must be such an uncertain time for you and M.

    Neil and Sandra x

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  2. Heart Mammi30 June 2017 at 22:07

    That she is almost 6 and has managed so well before the Fontan is amazing in itself.
    Thinking of you all over the next few weeks xxx

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  3. Kim Carberry1 July 2017 at 20:19

    Aww! Louise. Sending the biggest of hugs!
    What a worrying time for you xxx

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  4. elizabethinchurch4 July 2017 at 17:58

    Love and prayers to enfold you all. Thanks so much for keeping your "greater family" up to date with what's happening.

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  5. Coombe Mill - Fiona8 July 2017 at 08:36

    These appointments must be such a worrying time for you, fingers crossed for a good plan coming forth. Jessica may have lost weight but she still looks in good spirit and full of positive thought which counts for a lot, she is a strong girl in a loving family and if anyone can overcome heart issues Jessica will xxx

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