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 5 July 2016

A weight lifted

Last week we had a letter from Jessica’s cardiology team informing us that they had discussed the results of the cardiac catheter and were not planning her next stage surgery for another year or two.  It feels like a weight has suddenly been lifted off our shoulders and we can now look forward to the summer without the fear of the next surgery hanging over us.  


Paddling in the sea with Daddy


It’s been a busy month since the catheter took place.  We had a lovely week away at Butlins in Minehead which the girls enjoyed very much and it was lovely to see how Jessica has suddenly become more confident in the swimming pool.  We’ve had day trips to Legoland and Beale Park, been to see In the Night Garden Live, watched Jessica taking part in her preschool sports’ day and her Girls’ Brigade company display, and celebrated the fifth anniversary of the in-utero surgery which gave us that glimmer of hope back when I was pregnant with Jessica.  How amazing it is to be five years on from that point and to see Jessica doing so well!

Meeting Billy and Bonnie Bear at Butlins


We’ve had a couple of hospital appointments this month.  Jessica had a referral to the audiology team as we had some concerns over her hearing.  She has been diagnosed with glue ear.  Thankfully at present, it isn’t having enough of an impact on her hearing to need any further treatment but will be checked again in a few months’ time.  Jessica also had her regular eye check-up and her vision is still good with her glasses so just another check-up needed at the end of the year.

Enjoying some sunshine after the Girls' Brigade company parade


Jessica is now in her last two weeks of her time at preschool (sob!) and has been visiting her new infant school. She is very excited about the prospect of starting school (especially as her best friend is in the same class) and her new teacher seems very nice.  We’re in the process of putting health care plans together ready for the start of school and making sure that we give as much information as we can about Jessica’s heart condition and how it affects her day-to-day.  Her preschool have been excellent with regards to this and our conversations with school have been reassuring so far on this front too.  In the meantime though, we’ll been making the most of the summer before our big girl takes her next big step into the wider world.

Jessica's graduation photo from preschool

Little Hearts Big Love

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