A little girl with a special heart

Yesterday, we said our final goodbyes to Jessica as we celebrated her life at church with family and friends, and then laid her to rest in her forever bed. It was a day of sadness and smiles, tears and laughter and one in which we as a family felt truly surrounded by love. Our church was packed full of people coming to pay tribute to a little girl who touched the lives of all who encountered her story and who spread sunshine wherever she went. Somehow we found the strength to share our own tribute to our little girl with a special heart:


Jessica playing in the sand at Denham Country Park - "A little girl with a special heart"


“It is almost exactly seven years since the day we were told that Jessica’s heart condition was so severe that she was unlikely to be suitable for surgery and would live a few days at best. Seven years since we sat in a hospital chapel and prayed desperately for a miracle. Our prayers were answered.


We were offered the chance for Jessica to have a hole in her heart enlarged while still in the womb.


It was risky and scary, but it gave us hope.


The moment she was born was one of the most joyous moments of our lives. To see her face and hear her cry was just amazing. We knew that there was quite a journey ahead, but we held on to hope and faith and walked it.


Me and hubby with Jessica on neonatal unit on the day she was born


Over the next six and a half years, Jessica went through five surgeries – four of them in her first year of life and the last back in December. Throughout it all, she was the bravest, happiest little girl.


When she recovered well from her last surgery, we thought we could relax for a while and enjoy family life for a few years without the fear of surgery hanging over us. Sadly, it was not to be.


Seven years ago, if you had told us that we would be blessed with six and a half years with Jessica, we would have jumped at the chance. We are thankful for every day of those six and a half years whilst always wishing we could have had one more day, one more moment with our little girl. No amount of time really could ever have been enough.


Jessica brought so much joy into our lives from the moment she arrived. Her smile lit up our world; her laughter made our hearts sing. She might have only had half a working heart, but it carried a huge amount of love and she lived her life to the full.


To Jessica, having a special heart was just part of what made her special. The zip scar on her chest was a line of bravery – something that told the story of how the doctors had helped make her special heart work better. She didn’t see it as something that held her back or stopped her doing the things she wanted to do – it was just part of who she was.


Jessica having an echo at hospital


Only once did she express frustration over not being able to do something because of her special heart and that was the last time we took her swimming. She wasn’t quite well and she got cold quickly so couldn’t swim for as long as she wanted to. Other than that, she just accepted and embraced life as it was. She once turned around to Sophie and told her “you and Mummy and Daddy all have hearts, but only mine is special.”


Jessica taught us to live in the moment and enjoy it. Every day was a gift because the future was uncertain and tomorrow never promised. She was a little girl with a huge amount of zest for life. She had the sunniest smile and an infectious little giggle. Her godmother Gillian once described her as a “joy carrier”. If we had to sum up Jessica in two words, that would be it. She brought sunshine into the lives of all who knew her, and she touched the hearts of people who never met her.


She had so much strength and courage and took everything in her stride – even her last heart surgery. Right up to the moment she went off to sleep in the anaesthetic room, she was smiling away – excited about her “sleepover” at the doctors. Even when she had to undergo unpleasant procedures in intensive care, she accepted that the doctors and nurses were doing them to make her feel better and endured them bravely.


On her admission to A&E, four days before she died, she chatted away with the doctors, asking them about all the things they needed to do. As she went up to the ward, one of them told Louise that she was the politest little girl they had ever had. She was our little superstar and we were so proud to be her daddy and mummy.


She was the loveliest big sister to Sophie. The bond they shared was such a beautiful one. It was wonderful to watch them playing together – two little heads close together as they lost themselves in a world of their own imaginations. To see them cuddling up together over a book or the iPad; to listen to them giggle together; to watch them walking along hand-in-hand was beautiful.


Jessica was such a proud big sister. She was so excited when Sophie started Girls’ Brigade with her – eager to show her what to do and look after her. There were times when the roles were reversed, and Sophie was protective of Jessica – aware of the times when Jessica needed a little extra help. One of the moments that sticks in my mind was on a day out last summer when Jessica was struggling to walk uphill. Sophie took her hand and said “come on Jessica, you can do it. I will help you.” The love they had for each other was wonderful.


Sophie holding Jessica's hand and helping her to walk uphill


When we told the girls that we were expecting another baby, Jessica was so excited. She was so looking forward to being a big sister to “Peanut”. She adored babies and was so gentle with them. It breaks our hearts that Peanut will never get to know what a wonderful big sister Jessica would have been, but we are sure that she will be looking over us all and we will keep her memory alive.


Sophie, me, hubby and Jessica sitting on a bench with me holding a scan photo


Thank you, Jessica, for six and a half amazing years. You taught us to be strong, to have faith, to love deeply and to live life to the full. We thank God for every single moment we had with you.


You brought us joy every single day of your life and we will miss you every day for the rest of ours. Although you are no longer here with us physically, we carry you in our hearts wherever we go and we have so many beautiful memories to look back on.


We will love you forever and one day we will be with you once more. Until then, goodnight darling girl and thank you for everything you brought to our lives.”


A smiley Jessica on a fairground ride

13 thoughts on “A little girl with a special heart

  1. Hi Louise, my heart was breaking for you as I read your post. I never met Jessica or any of your family, but I can honestly say that your story has touched my life. The strength and courage you have shown since your sweet girl left you is something I greatly admire. Jessica was the brave little girl she was because of you and your family. Jessica may have led a short life, but what a fantastic life she had. Your posts showing her and Sophie living life to the full despite her heart condition. She’ll never be far from your thoughts, always in your heart and her short life has touched so many from all over the world, much more than most people do in a lifetime…. I wish you all the best as you start a new chapter in your lives. And I’m sure Peanut will grow up knowing what a wonderful girl she was.


  2. She was a miracle, in a million ways. Though I have not met you, I will never forget her face, and the wonderful moments with her that you have shared. Thinking of you and sending so much love.

  3. Jessica was an amazing young lady and an inspiration to all….We should all be more like her. Live in the moment and enjoy it. Even though I have never met you it has saddened me so much that you have lost your beautiful girl.
    Thinking of you all xx

  4. Louise, this is heartbreaking, but so beautiful as ever. She was an amazing little girl in so many ways – in how she coped and thrived with her problems, but also in the way she cared and loved and brought smiles to so many faces. She was a very lucky little girl to have you as her family and you were very lucky to have her. I just wish you could have had her for a lot longer. Sending thoughts and strength as ever for the future. x

  5. This is such a beautiful post Louise, Jessica has surely touched the hearts of so many through your beautiful words and sweet photographs. I’m so sorry that her last operation didn’t give you more time with her, but I know that whatever time you did have you made the most of in every single way. Sending much love to you all xxx

  6. It is so sweet to see that bond between Sophie and Jessica and Jessica’s story is so inspiring – how she was always positive and embraced life. Such a sweet little girl who has touched the lives of so many and will never be forgotten.

  7. Tears in my eyes writing this, so sorry for your loss. I lost my little girl at 10 hours so in some ways I do know what youre going through. Hugs to you and your beautiful family xxx

  8. All though I do not know you your story has seriously touched me . I’m literally crying while writing this . You have such courage and bravery putting your story and feelings out in the world for all to see . Your special little girl will be smiling down on you all . I will never forget that smiling face . You should feel very proud of yourselves . You have so much love to give . We have a baby boy who is 2 year old next month , he has had 10 ops so far and I pray for him everyday . Your story has gave me courage that it’s ok to talk about how I feel and for that I thank you .
    Feel free to contact me back . It’s Tylerdaddy2010@hotmail.co.uk
    John (Tommo)

    1. John, thank you so much for taking the time to comment. I find writing so helpful especially with trying to process my grief at losing Jessica and it has helped capture so many memories. It must have been so hard for you seeing your baby boy go through so many ops and I’m glad that our story has helped you feel able to open up. Hope that your little boy is doing well and that he has a lovely birthday next month x

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