In Memory of Jessica- Little Hearts, Big Love ❤

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, In Memory of Jessica- Little Hearts, Big Love ❤

I never truly feel comfortable sharing someone else’s story on our blog but some people touch our lives so deeply that we need to write about them.  Just over two weeks ago I came across shocking, tragic news.  The darling Jessica, daughter of Louise (Little Hearts Big Love)  and Michael, older sister of Sophie had passed away during the night.  At first I just kept reading and rereading Louise’s post as I really couldn’t believe it (and didn’t want it to be true).   Every time I think of Jessica I remember her so full of life-  running around and giggling with Sophie or cuddling and climbing on Louise and Michael and I will never ever be able to think of her another way.  Unfortunately, the reality is all too true and a little girl has lost her life too soon.  This is Jessica’s story:

Day 104 – I am grateful for six and a half amazing years with this little girl. We are utterly broken-hearted right now. Jessica passed away in the early hours of this morning. She brought us so much joy and we are thankful for every moment we got to have with her. It was more than we thought we would have in the early days but it will never be enough. Fly high my beautiful girl xxx

A post shared by Louise (@littleheartsbiglove) on

For those who don’t know, Jessica was diagnosed with Hypoplastic Left Heart Syndrome, half a heart, (the same heart condition as Danny) while still in the womb.  Jessica’s parents were told that she wouldn’t be suitable for the surgeries needed to keep children with this condition alive.  Initially they thought that there was a significant risk that her heart would fail before she even reached full term.  Louise and Michael prayed for a miracle and a few weeks later were offered the chance to have pioneering in-utero surgery to enlarge a hole in Jessica’s heart and potentially give her a chance of being suitable for post-birth surgery.  This first pioneering fetal surgery  took place successfully when Louise was just 28 weeks pregnant.

, In Memory of Jessica- Little Hearts, Big Love ❤

Jessica was born in September 2011, she had her first open heart surgery at 8 hours old, followed by more surgery a week later (a hybrid procedure).  She came home from hospital at 4 weeks old and returned at 14 weeks for the Norwood procedure, then a few months later for the Glenn.  During her first year, Jessica spent over three  months in hospital.  You can read all about Jessica’s Journey on her dedicated blog.  

I first met Jessica and her family at a Little Hearts Matter Open Day in 2016.  We were preparing to return to Birmingham Children’s Hospital for Danny to have his new stent and repair work in the following days and Jessica’s family were starting to prepare for her Fontan operation.  It was wonderful to meet this lovely family and then to discover that they blogged too and to follow them online in this way.  Jessica reminded me of Rebecca when she was the same age- so dreamy, kind and giggly- just a wonderful girl who had been through so much in her short life.  

At the end of last year we all followed Jessica’s journey closely as she was given a date for her Fontan.  Unfortunately, as is often the case when it comes to surgery, this operation was cancelled not once but twice.  The good thing about this meant that Jessica got to celebrate Christmas home with her family.  They were then given a new date of December 27th for her Fontan.  I remember on New Year’s Eve when we were home celebrating the new year with our family thinking about Jessica, Louise and Michael bringing in the new year on PICU.  For every day that is a normal day for one family, there are families in hospital with their seriously ill children.

I was so happy to hear that two weeks later Jessica was allowed home and her recovery was going well.  It was wonderful to see Jessica enjoy days out with her family once more.  We were pleased to bump into the Georges at the LHM Open Day in March.  We actually spotted them at breakfast in our hotel before making our way to the venue.  We ate our lunch together before heading back to more sessions (I say “we”, my kids were in the youth groups and Dave spent most of lunch time in the queue!).  Again the girls enchanted me as they played together happily and enjoyed their food.  I remember having a conversation and telling Louise that I was glad that the Fontan was now over for them.  It’s a huge hurdle that hangs over heart families for such a long time in the early years.  I hoped that Jessica would now get a hospital free couple of years before surgery was needed once more (special HLHS hearts can not be fixed instead they are replumbed and regular repair work is needed over the years and sometimes eventually a heart transplant).   That conversation keeps coming back to haunt me as for Jessica this wasn’t meant to be, which is so unfair.

Day 76 – I am grateful for a lovely day meeting up with other heart families at the Little Hearts Matter open day. I was very excited to see this poster in the coffee area too saying that my book has received funding and will soon be made available to other heart families! #365daysofgratitude #project365 #heartfamily #mybook #heartwarrior #capturingtheday #tribalchat #coolmumclub

A post shared by Louise (@littleheartsbiglove) on

 Heading downstairs after lunch we spotted Louise’s book on the Little Hearts Matter stall.  I thought how amazing  it was that while preparing to go through this difficult procedure with Jessica, Louise had managed to produce such a useful resource for heart families also about to embark on this journey.  She is such an inspiring woman I’m sure you’ll agree.  This resource will go on to help future heart families for many years to come.

At the party two years ago Rebecca had the chance to play with Jessica and Sophie, but this year she was old enough to attend the “Pizza and Film” social instead.  If we had bought our two younger girls they would have loved to have played with the girls.  

Day 102 – I am grateful to be back home again with both my gorgeous girlies. Jessica is doing well, still got a nasty cough but we’ve come home with a big bag of meds (and a complicated schedule to follow over the next few days!) which should hopefully help get her well again. Cardiac check-up has also been moved forward to the end of the month. Looking forward to sleeping in my own bed again tonight after two nights in a chair next to Jessica’s bed! #365daysofgratitude #project365 #myheartkid #hearthero #siblings #heartfamily #heartwarrior #hlhs #chd

A post shared by Louise (@littleheartsbiglove) on

Unfortunately, Jessica continued to be ill on and off.  In April she had a worrying episode and ended up in High Dependency.  All Jessica’s supporters gave a sigh of relief when we heard that Jessica was now at home (albeit with a huge bag of medicine) and hoped that she would now fully recover and be able to enjoy summer (always an easier few months for our heart kids who struggle during the cold winters).

But tragically, the next update was the news that Jessica had passed away.  This breaks my heart.  It is of some comfort that Jessica died at home while snuggled in-between her beloved parents, Louise and Michael.  She was born into such love, lived a full, happy life and died peacefully nestled between them feeling their eternal love I’m sure.  

It’s #meandmineproject day over on the blog today and we have a little bit of news to share… #myfamilyphoto #myhappycapture #capturingtheday #rememberingthesedays #babynumberthree #heartfamily #coolmumclub #tribalchat #joyfulmamas #happylittlebuttons

A post shared by Louise (@littleheartsbiglove) on

Jessica was excited to  be expecting a new baby sibling this summer.  I love the photo above which shows how happy the girls are about this news.  It’s not fair that Louise and Michael have lost their eldest daughter, it’s not fair that Sophie has lost her big sister and it’s not fair that Jessica never got to meet “Peanut” and vice versa.  But I know Jessica lives on forever in her families hearts and many more.  I know Peanut will be told all about their big sister Jessica and will say her name.  I know Jessica will be watching over her wonderful family and would want to see them smiling and happy.

There will forever be a Jessica shaped hole in Louise, Michael, Sophie and their family’s lives and for everyone whose lives she has touched.  

, In Memory of Jessica- Little Hearts, Big Love ❤

It’s testament to how much Jessica is loved that when a fellow blogger Katie, Mummy in a Tutu set up a fundraising page for Little Hearts Matter in honour of Jessica it very quickly hit 100% of the target.  So far over £5000 has been raised.   Little Hearts Matter offer support and information to all families affected by half a working heart.  We have been supported by them over the years too.

Please take time to read Jessica’s Journey and Little Hearts Big Love where Louise writes about Jessica and her family far more eloquently than I can.   Many years ago I used to take part in a “gratitude” hashtag on Instagram but for me that fell by the way.  As readers know I also used to take part in the Siblings and Me and Mine family projects and again drifted away from this.  Louise and the wonderful memories she has captured over the years have reminded me and inspired me to start again as it’s so important to have these memories to treasure.  I enjoy reading Louise’s #365daysofgratitude daily gratitude challenge which she commits to every day, even though at times it’s not easy and would also like to start taking part in this.  Follow Little Hearts Big love Daily Gratitude Challenge on Instagram here:

As Louise said, they were lucky to have Jessica for longer than they expected but it will never be enough.

I’m sending all my love to Louise, Michael, Sophie and family.  You are always in our thoughts.

Fly high Jessica!  You are so very loved and will be remembered always!

Donations can be made to Little Hearts Matter in honour of Jessica here:

, In Memory of Jessica- Little Hearts, Big Love ❤

1 Comment

  1. , In Memory of Jessica- Little Hearts, Big Love ❤
    Margaret Gallagher
    May 1, 2018 / 6:54 pm

    My heart goes out to the family Their strength and courage has totally blown me away – have been following their journey An inspiration to all Jessica may not be here but her spirit and smile live on – always

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