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.

Sunday 2 August 2015

Little challenges

The last few weeks have been all about completing various challenges.  We’ve been hunting for the different Shaun the Sheep sculptures around London and Bristol and have managed to find all 120 of these.  Jessica has loved finding all the different sheep and is quite addicted to the iPad app for finding them – she loves to flick through the pictures of all the sheep we have seen and name them.  




We had a lovely family holiday on the Isle of Man where we managed to find our final Olympic gold postbox and complete the challenge that Jessica’s godfather Bryan set us nearly three years ago.  It is lovely to look back on all the photos of the different postboxes and see how our family has changed and Jessica has grown up in that time.  Jessica enjoyed her holiday very much – she had fun building sandcastles on the beach with Sophie and enjoyed going on the mountain train, steam train and horse-drawn tram.



We had a community nurse visit the day after getting back home again and were a little concerned that Jessica’s sats were lower than usual at around 74-75 (she is usually around 79-81) and after discussion with the cardiac liaison nurse at Oxford, we were asked to bring Jessica in for a check-up the next day.  Thankfully all seemed to be well with Jessica’s heart function on her echo and her sats had come back up to normal levels so the team are happy to continue with the present plan to monitor with no intervention planned for this year.  Jessica also had a chest X-ray which we are awaiting the results of.  She got a certificate for being very good at standing still and having this done (and Sophie also got a certificate for waiting patiently while Jessica had her X-ray).  Our next planned appointment is at the beginning of next month but if all is well with the chest X-ray then this will probably be moved back.  



Otherwise, Jessica is doing well and continues to be a very happy and active little girl.  She is starting to get quite excited about her birthday next month and tells us every day that “it will be my birthday soon!  I going to be 4!”


It is the little blips like we have had this week that remind us again of the reality of Jessica’s heart condition and the need for future surgery but to hear her chattering so excitedly about her birthday makes us realise again just how very lucky we are to have her.  The last four years have gone by so very quickly – sometimes it seems that it was really only yesterday that she was a tiny baby and now she is getting to be quite a big girl. 


Little Hearts Big Love

1 comment:

  1. I am so glad Jessica enjoyed the holiday! Building sandcastles is such a wonderful activity! I'm sorry her sat was off, but glad it was most likely just a blip. I hope her chest X-ray comes back normal for her.

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