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.

Wednesday 30 August 2017

The wait continues…

Since our last update, we’ve been waiting to hear about the date for Jessica’s next surgery. We have now had a call but the proposed date (15th September) coincides with the start of one of Michael’s busiest periods work-wise. This was something that we mentioned to the surgeon at Jessica’s appointment back at the start of the month, and we were reassured that although the surgery was needed, it was not urgent. We are hoping therefore that we can hold off for a few more weeks so that Michael can focus on being there for Jessica without trying to juggle too many balls on the work front too.


We are now waiting to hear again from Southampton with regards to a different date for the surgery. In the meantime we have been focusing on enjoying family moments over the summer. It has been lovely to be able to enjoy the whole of the summer holidays. We’ve had weekends away, spent time with family and enjoyed lots of days out. Living in limbo has been hard at times but it has also meant we’ve focused on enjoying the moment as much as possible.


A collage of photos from our summer - Jessica with Sophie on a ride-on Little Tikes bike; the four of us with the Gruffalo; Jessica sitting on a tree stump at the Devil's Punchbowl; Jessica paddling in the sea; Jessica playing with water; Jessica with Auntie Fizz, cousins Ebony and Erin, Mummy and Sophie outside a beach hut; Jessica and Sophie with Godmummy Gillian; Jessica and Sophie with a fairy at Trentham Gardens and Jessica and Sophie standing outside a door at Upton Court


Jessica had her routine check-up with the paediatrician at Wexham Park yesterday. She has managed to gain some weight since her last check with the community nurse and is now up to 16.7kg which is encouraging.


Earlier this month, Jessica’s story was featured in the Daily Mirror, helping to raise awareness of congenital heart defects and the work of Tiny Tickers in helping to improve early detection. It is amazing to think that next week she will celebrate her 6th birthday and start Year 1.
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