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.

Saturday 7 November 2015

The end of an era

Jessica had her cardiac check-up yesterday and her last appointment with her wonderful consultant Dr Archer, who is retiring at the end of the year.  We were very sad to say goodbye to Dr Archer as he has been there since the very start of Jessica’s journey, from the day she was diagnosed, and was also a key part of the team who performed Jessica’s in-utero surgery.  He has been a huge part of this journey for over four years and we are immensely thankful for everything that he has done for Jessica that has helped her to be here today.



To start again with a new consultant next year is quite a scary thought – we don’t even know yet who our new consultant will be.  We keep reminding ourselves though that there are still people in the teams at Southampton and Oxford who have known Jessica since she was a baby and that whoever takes over from Dr Archer will be well informed about Jessica.  Although the uncertainty that comes with change is unsettling, holding on to our faith and remembering that God is always constant and bigger than all of this has helped hugely.



Thankfully, all was well with Jessica’s check-up yesterday – her heart function is still good and her sats remain in the low 80s.  She is growing and gaining weight nicely and there are no plans to move forward with regards to planning her Fontan procedure as yet.  The team are happy to continue to monitor her with the next check-up due around late March/early April.




It was very reassuring to be told that Jessica’s heart function remains stable – we had been a little worried recently as Jessica had been much more tired since starting back at preschool, and has been asking to go in the buggy when out and about a lot more.  Whilst we knew that her tiredness was probably due to being back at preschool (especially as she is now going three mornings a week instead of two), her heart condition makes it more difficult to be sure whether it is just “normal” back-to-preschool tiredness or an indication that her heart is not working as well as it was.  Since the half-term break though, she has picked up a little more energy-wise, which is also encouraging.



Jessica also had her eye check-up last month and whilst her eyesight is fine with her glasses on, she is now at an age where the team there would be thinking about offering surgery to help correct her squint.  The surgery would be mostly cosmetic rather than being necessary to improve Jessica’s eyesight, and does not need to be done at a particular age so we can wait or decline if we wish.  We have discussed it with Dr Archer who has advised that if we decide to go ahead with this procedure that it should be done at either Oxford or Southampton and that we should wait at least six months after the Fontan procedure if we want to hold off until she is older. We have another eye appointment in February and will discuss it further then.



Hospital check-ups aside, we have had a lovely couple of months – Jessica has enjoyed having a pirate day at preschool, having her face painted at Apple Day, celebrating Sophie’s second birthday and visiting our “favourite Legoland ever” for the last day of the season.   We have visited our local infant school and filled in the application form for Jessica to start school next September.  Our little girl is growing up so fast – she is becoming more and more independent every day and often tells us “I can do it myself.  I am a grown up!”  



Little Hearts Big Love

2 comments:

  1. When do you meet your new consultant?

    She's amazing isn't she to be holding her sats in the low 80%'s, she's my inspiration.

    Martha start's nursery school in February and I really want her to have morning sessions so that she can have a nap in the afternoon, I really don't know how she'll cope if with afternoon sessions because there is no way she'll go down for a sleep for me in the mornings. I'm always second guessing myself if Martha sleeps for longer than usual, wondering if it's because of her CHD or if she's just being a regular toddler needing more sleep after playing.

    I think it's something we'll do for our whole lives, when something happens or when they do something out of character we will question if it's because of their Heart. xxx

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    1. Am hoping we meet the new consultant when we have our next appointment in late March/early April although they haven't yet appointed one. If not, it will be someone from the team in Southampton.

      Hope all goes well with Martha starting nursery. It is hard when they are more tired, constantly second guessing whether it's normal tiredness due to changes in routine or because of something relate to their hearts - definitely agree that it's something that we'll probably always do x

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