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.

Tuesday, 4 November 2014

CHD awareness, check-ups and celebrations

It’s been another busy month for us all with lots of fun days out as well as fun indoors now that the weather is getting colder.  We have had trips to various parks collecting autumn leaves and feeding ducks, a day trip to London to see the poppies at the Tower of London, fancy dress play sessions over half term and fun with painting and printing with autumn leaves. 





Jessica’s latest check-up with the community nurse was encouraging – she is gaining weight well and staying above the 25th centile which is great and her sats are still up in the mid 80s which is really good for Jessica.    We have now registered Jessica’s place at preschool and she will be starting in January and going for two mornings a week.  She looks very grown-up in her preschool jumper!



Jessica’s story has been featured in the Big Tick – a campaign by the charity Tiny Tickers to raise awareness of early detection of congenital heart defects by providing expectant mums with information so they know what questions to ask at the 20 week scan.  If you are expecting a baby or know someone who is, pop along to their website and request a card – we were very lucky that Jessica’s heart condition was picked up at her 20 week scan as we have no doubt that she would not be here today if that hadn’t been the case.


Jessica’s photo was also featured in this month’s issue of ‘Let’s Knit’ magazine as Little Hearts Matter are their featured charity of the month.


We celebrated Sophie’s first birthday last week and Jessica enjoyed seeing friends and family and playing with her cousins at Sophie’s birthday party.  She also thoroughly enjoyed helping Sophie to open her presents and cards (or more accurately, opening most of them for her!) and was quite excited at having new toys to play with (not sure if she thinks most of them are for her but thankfully Sophie is quite happy to share!)  Auntie Maxine came to stay for a few days after Sophie’s party and then we had a trip down to visit family again when Auntie Maxine went home so both Jessica and Sophie have had lots of time catching up with family lately, which has been lovely.




We had one final trip to Legoland yesterday as it was the last day before it closed for the winter and Jessica enjoyed seeing the pirate show (her favourite part of Legoland)and going on all the rides in spite of the rain (which just meant having lots of puddles to splash in which is always fun!)  


Little Hearts Big Love

2 comments:

  1. You've been busy! How lovely and encouraging for you all that Jessica's check up went well too. Must be such a relief that she's going in the right direction.

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    1. Thanks Philippa - yes, so glad that she is doing so well at the moment x

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