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.

Monday 5 August 2019

Investigation report and JoGLEing for Jessica

We have now received the report from St Peter’s Chertsey after their investigation into the care that Jessica received there shortly before her death. They have concluded that Jessica’s care there was appropriate and acceptable and the cardiology team at Southampton were happy with the care that Jessica received and the decisions that were made. The only thing that might have been done differently would have been to transfer her back to Wexham Park instead of discharging her home as she was known to the medical staff there but they feel that this was unlikely to have made a difference to the outcome. The one area that was identified as needing improvement though was with regards to communication between the trusts involved in Jessica’s care as St Peters should have been informed of Jessica’s death at the time and not six months later.



The report did give us one new piece of information – that Jessica’s death was from viral pneumonia and was unlikely to have been caused by an arrhythmia. It doesn’t really explain why she collapsed so suddenly or the mysterious back pain that she complained of in those last few moments but we are resigned to the fact that we know all we are ever going to know and that the only explanation we have is simply that her heart could no longer cope with the viruses she had. It seems surreal that this is the last new piece of information we will have about Jessica.


A smiley Jessica sitting on a rocking horse at the park



Sixteen months on, how are we doing? In many ways this second year of loss has felt harder than the first. We miss Jessica so very much and the ache for one more moment feels unbearable at times. But we keep going as best we can. Sophie has enjoyed her first year of school and Thomas is now a year old and increasingly on the move - cruising around the furniture and full of smiles. He is very much like Jessica in temperament.




Sophie holding Thomas who is sitting in a trug

Since our last update, Jessica’s memorial has been put in place at her forever bed. We are so thankful to Lillyfee Woodcarving Studio and the skill of their team at recreating Jessica with her Kerry doll. They captured her so beautifully and the level of detail is incredible. I can recognise exactly what outfit she is wearing and the way she is sitting and has her little plaits one forward, one back is so characteristic of her.


Jessica's memorial at her forever bed



Jessica's school have also put up a memorial for her. We were invited to school along with some of Jessica's classmates to open her memorial and to write a memory of Jessica on a ribbon. These ribbons were then tied to a beautiful butterfly which is fixed to a wall in the school playground. There is an outdoor arts space dedicated to Jessica, which is very appropriate given her love of drawing, and her photo hangs in the school corridor. The mosaic butterflies which surround it were put together by her classmates and Sophie.



Jessica's memorial surrounded by mosaic butterflies; cakes with pink butterflies; Jessica's butterfly with ribbons decorating it; a butterfly with "in loving memory of Jessica George. Fly high" on Jessica's easel; the outdoor art space in memory of Jessica



Later this month, we will be travelling from John O’Groats to Land’s End by train and bus – our “JoGLE for Jessica” to raise money for Little Hearts Matter in memory of our beautiful big girl. We did this journey the other way round three years ago with our girls and it was quite an adventure. No doubt it will be very bittersweet to do it again and it will certainly be challenging with a 12-month old in tow but hopefully we will have fun too!


Me, hubby, Jessica and Sophie at John O'Groats


If you would like to support us and help us raise money for a fabulous charity that is very close to our hearts, you can do so via our JustGiving page.



We’ll update again to let you know how we get on!