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.

Thursday, 18 October 2018

Six months on

It has been six months since Jessica died. Coming up to the six-month milestone has been a very emotional time for us all. We have had some of our hardest days since Jessica’s funeral. This year’s Little Hearts Matter autumn memorial walk took place on 13th October. It felt like an appropriate way to spend the half-anniversary of Jessica’s last day. Sophie enjoyed decorating paper hearts to hang on the LHM tree and planting bulbs around the bench. It was also lovely to hear how popular Jessica’s heart operation books have been and to know that her story is still helping others.


Louise, Michael, Sophie and Thomas at the Little Hearts Matter tree in the National Memorial Arboretum


This morning, we received a letter from St Peter's hospital informing us that they are carrying out an investigation into the care Jessica received shortly before her death. This process is expected to take about four months. One of the many questions that we have asked ourselves since Jessica died is whether she would still be here had she not been discharged that day. Perhaps this is a question which may now be answered. The findings from the investigation won't bring Jessica back of course, but perhaps there are improvements in care which could be made as a result.


We have also spoken again to the team at Southampton and are hoping to meet again with them to discuss the findings of Jessica’s post-mortem. The information we received was very limited and we are hoping they can obtain a few more details.


Louise has continued to blog about life after Jessica and our grief journey over on her blog and has found this helpful. Last week, her blog won a Brilliance in Blogging award in the Inspire category.


This weekend Louise's brothers and nephews are running the Great South Run in memory of Jessica and fundraising for Little Hearts Matter. We will be going along to cheer them on. If you would like to support them, you can find their JustGiving page here.


The Little Hearts Matter running vest with a picture of Jessica

No comments:

Post a Comment