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, 8 August 2011

34 week scan update

We have had another scan at Oxford this afternoon. Jessica is still growing well (latest weight estimate is 4lb 13oz) and is as active as ever. At our last scan, the hole that was enlarged through the surgery appeared to be fairly similar in size to how it was before the surgery and this is still the case. Since then, the team at Oxford have come to the conclusion that repeating the atrial septostomy and enlarging this hole with a balloon after birth is unlikely to be possible and any attempt to enlarge this hole would need a full-blown surgical procedure. The plan for birth has therefore changed and is as follows: if post-birth surgery remains an option, we will be going to Southampton for the birth. If the option of surgery is ruled out and we are back to the original plan of comfort care, we will go to Oxford.

At present, as far as we know, the Southampton team are still willing to consider attempting surgery after Jessica is born. We are due to have another scan later this week in Southampton and to meet the team there so that this option can be discussed further with them. We have been advised by Dr Manning (our cardiac consultant in Oxford) not to raise our hopes too high – the odds of Jessica being suitable for post-birth surgery are still fairly low due to the severity of her heart condition. At the moment, we are just thankful that it is still considered to be a possible option although as the due date gets nearer and nearer, we are feeling a little more anxious about where this journey will lead us.


On the plus side, Jessica still appears to be coping well with everything and we got to see her little face on scan today which was just amazing. We will update again after our appointment with the Southampton team.

1 comment:

  1. My heart goes out to all 3 of you, lots of love Brian x

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