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 27 July 2011

32 week scan update

Since the surgery four weeks ago, we have been having regular scans to monitor Jessica's heart condition and to assess what the plan is likely to be when she is born. The hole that was enlarged with the surgery seems to have closed up slightly since the surgery but there is still blood flow through it and the blood flow through one of the pulmonary veins still seems to have improved when compared to what it was before the surgery. Jessica is continuing to cope very well with everything - she is very active and there are no indications on scan at present that her heart condition is causing her a problem (in fact she is so wriggly that it makes assessing the blood flow through various vessels quite a challenge at times!) She is also growing well - estimated weight at yesterday's scan was 4lb 2oz, which is fairly average for this stage.


Our plan since the surgery has been for Jessica to be born at John Radcliffe and if surgery was an option, then our preference was to go to Southampton for this. The team at Oxford work closely with the team at Southampton and they have been aware of our case for some time and have seen photos and information from our scans. Until yesterday's scan, the plan was for comfort care only after Jessica was born - it would have been too early to do anything in any case if she had been born before this stage. However, now that we have reached 32 weeks, we have now moved from an automatic 'no' to further surgery to a position of 'maybe'. The team at Southampton are now willing to consider if they would attempt surgery after Jessica is born which is very encouraging news. Obviously though, this would depend on Jessica's condition at birth and how the blood flow through the heart is at that point so any final decision on whether surgery would be an option will have to wait until after Jessica is born.

If Jessica arrives at any point from now onwards, the plan would be to give her prostaglandin which would keep one of her heart ducts, called the ductus arteriosus open (this allows blood flow between the artery providing blood flow to the body and the arteries going to the lungs and normally closes after birth). The team at Oxford may also consider repeating the atrial septostomy (the procedure that she had done in the womb) after birth to improve the chances of surgery. Then if Jessica seems well enough for surgery to be an option, we would be transferred to Southampton for the surgery to take place there. At this stage we don't know exactly how much risk there would be to her with the Norwood procedure (which is the first stage of surgery performed in children with hypoplastic left heart) although it is quite a risky procedure in itself.

We still have quite a way to go yet though and each day with Jessica still being active and wriggling is a huge blessing and gives us a little more hope. Please keep us in your thoughts and prayers if you are able to over the coming weeks. If all continues to be well, our next scan appointment will be in two weeks' time.

1 comment:

  1. I'm so thrilled to hear that things are looking a little better for you and Jessica.

    Thinking of you all,
    Rach

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