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.

Monday, 19 February 2018

Seven weeks on: post-Fontan check-up

Jessica has been recovering well at home over the last few weeks. Her energy levels are now back up to where they were before her surgery and hopefully will continue to improve. She has enjoyed having “school at home” with Mummy since coming home and it has been lovely to have that one-to-one time with her.


Jessica out and about in the buggy


We were back in Southampton today for Jessica’s second post-Fontan check-up. She coped well with the echo and ECG and surprised herself with how well she coped with all the stickers being taken off her chest afterwards too! She’s doing quite well – her heart function looked good on the echo and she can now come off the diuretics which leaves her with just aspirin and Vitamin D on the medications front.



Her sats are still a little on the low side though. Today they were around 78 which is about the same as they were pre-Fontan. Hopefully they will start to improve over time but if not, Jessica may need to have an MRI to have a closer look at her heart to see if there is anything else causing the low sats, such as extra blood vessels bypassing the Fontan circulation. In the meantime, she will continue to have monthly sats checks with the community nurse as she did before her surgery.



A very smiley Jessica having an echo


Our other slight concern has been with Jessica’s voice. She’s quieter than she was before the surgery and still sounds hoarse at times, especially when she tries to raise her voice or shout. We’ve been reassured that this should gradually improve but if not, Jessica will be referred to an ENT specialist for further investigation.



Sats and voice aside, she seems to be doing well though. Her appetite has noticeably improved over the last couple of weeks and it was nice to see a weight gain in clinic today! She has also been given the green light to go back to school again tomorrow – starting back on half-days this week and then hopefully going back to full days next week if she copes well.



In other news, as many of you already know, Jessica and Sophie are very excited at the prospect of having a new sibling who is due in August. They have known about baby “Peanut” since Christmas and other than Jessica telling all the doctors and nurses about Peanut while she was in hospital, have done very well at keeping it a surprise. It’s lovely though to finally have our news out in the open and be able to share it now. Jessica has already asked whether Peanut will have a special heart like her. We should be having some extra heart scans over the coming week to find out the answer to that one.



Sophie, Mummy, Daddy and Jessica with Jessica pointing at the scan picture Mummy is holding


As far as Jessica’s special heart goes, we’ll be back in Southampton again in four months’ time for her next check-up. Hopefully there’ll be some improvement in her sats levels between now and then. In the meantime though, we’ll make the most of being able to enjoy normality once again.
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