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 14 April 2018

Journey's end

This is the post that I always feared I would one day have to write. It breaks my heart to be writing it now. Our beautiful Jessica passed away in the early hours of this morning. She had been unwell on and off for several weeks after returning to school. We had several doctor’s visits, a couple of trips to hospital and an emergency admission earlier this week. When she was discharged on Thursday with a big bag of meds, we thought that these would finally help her start to get better. Sadly, it was not to be.


Last night, she woke up coughing and came for a snuggle in our bed. She complained that her back and tummy hurt and then suddenly she stopped breathing. We called 999, tried CPR which the paramedics and A&E staff continued but to no avail. Our beautiful Jessica was gone.



Jessica wearing a butterfly headband


To say we are heartbroken is an understatement. We are devastated beyond belief and yet thankful that we had six and a half wonderful years with this beautiful little girl of ours. Seven years ago, we were told that she would not survive for more than a few days. To have had so long with her was a huge blessing. We thank God for every day we had with her. No amount of time would ever have been enough though.


Sophie, Mummy, Daddy and Jessica sitting in a garden on holiday


We were lucky to be able to enjoy a family holiday with Jessica in the last couple of weeks and we made some wonderful memories which we will treasure forever.


Sophie has been our little ray of sunshine. We don’t think she fully understands yet – she knows that Jessica is in hospital and that Mummy and Daddy are sad and miss her, but I don’t think that she yet realises that Jessica will not be coming home again.


Our beautiful girl is now out of pain – no more breathlessness, no more struggles with energy. Her special heart is whole again but ours will always have a big Jessica-sized hole which can never be filled.


Jessica sitting in her buggy and smiling



Thank you so much for all your kind messages of support and love on social media today. We know that we are surrounded by love and prayers and we are eternally grateful for that. Please, please keep talking about Jessica. Don’t ever feel afraid to mention her name. She is our little girl, she is part of our family and we will want to talk about her, to remember her, to relive all those beautiful memories. We know that many of you feel that you have no words, that you may not know what to say. The fact that you are letting us know that you care is enough.


One of Louise’s blogging friends has kindly set up a JustGiving page in Jessica’s memory to raise money for Little Hearts Matter. They have supported us so much through this journey and we know they will continue to do so in our bereavement.


Jessica will be going to the John Radcliffe on Monday for a post-mortem to determine the cause of her death. It seems appropriate that the hospital where this journey first started; the hospital that gave us that first glimmer of hope is the hospital to give that final piece of information about her life.


We will update again when we have more information. Thank you all again so much for your support and love. It means a lot to know that Jessica touched so many hearts in her short life. She was truly a joy-carrier and we were so blessed to have been her mummy and daddy.

Jessica snuggling her Kerry dolly

23 comments:

  1. I'm so sorry you had to write this post. Like others I am in shock at this devastating news. Jessica touched the hearts of so many people over the years. She was so loved. We will always remember her. Lots of love to you all. xxx

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  2. So very sorry to read this post, sending much love xx

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  3. I am so sorry to read this. Sending so much love to you all xx

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  4. Our condolences. In our thoughts and prayers Louise. Much love for you and your special joy giver 💕

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  5. Oh my goodness. I’m just so sorry to hear this news. Sending all my love to your family at such an awful time!

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  6. Much love to you all, I've just read your story xxx

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  7. Love you little one. So many hugs

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  9. So much love to you all. Jessica was such a special little girl and an inspiration to so many people. You are such an amazing family and we are heartbroken for you xxx

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  10. no words...really. So so sorry or your loss :(

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  11. Sending strength, peace and love at this difficult time xxx

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  12. Awww it is a blessing you had Jessica in your lives for that long. It’s nice that she came to your bed for cuddles, she was safe and loved when she left this world. Sending love and my deepest condolences xx

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  13. I'm so so sorry for your loss xx

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  14. I'm so sorry Louise, I don't know what you say and I can't even begin to imagine what you're all going through. Jessica was such an incredible little girl and I feel privileged to have read about all her wonderful adventures with her wonderful mummy, daddy and sister on your blog.xx

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  15. Tracey @ Mummyshire15 April 2018 at 11:48

    Jessica was a joy carrier, I love that phrase and looking back you have some wonderful memories which will always be with you. Love to you all at this very difficult time

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  16. So sorry to hear about Jessica. I followed her journey from the start through my friend Gillian and I'm heartbroken for you all. What a wee star she was x Lorna x

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  17. So sorry to hear this, our thoughts are with you

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  18. So much love to you all at this time xxxx

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  19. So sorry to hear about ur loss.I'm one of the girl in jessica's girl brigade.I'm so shock to hear the news Jessica is gone to a better place but will never be fogetten.Love Aaliyah Brown xx

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  20. I am so very sorry to hear about Jessica. I have been following your blog for a while as my daughter has HLHS, and I always loved seeing the photos of Jessica as she had such a gorgeous smile. Thinking of you, and your family x

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