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.

Thursday, 15 December 2011

Completing the Norwood

Jessica is now back on PICU and currently stable after a very long and anxious day for us all yesterday. We had some lovely cuddles and smiles before Jessica went off to theatre around 9.45am and then we had an anxious wait for news. In the meantime, Michael helped decorate the ward ready for Christmas (being tall enough to hang the baubles from the ceiling without needing a ladder!) and Louise added some more photos to Jessica’s memory book.

We received regular updates from the anaesthetist to let us know that things were progressing and at 6pm we finally heard that Jessica was off bypass and would be ready to go to PICU around 8pm, although it was 10.15pm before we were finally able to head down to PICU and see her.

The operation was much more difficult than anticipated. The aortic arch repair was successfully carried out but there was a lot of fibrous tissue around the pulmonary bands which caused problems with removing these. The wall of the pulmonary artery was very thin and split which meant it needed to be patched. Mr Haw, our surgeon, attempted to insert the Glenn shunt and this was done but the pressure gradient across the lungs was too high for Jessica to be able to cope with this in place and so it had to be removed and the site where it was inserted re-patched. It meant that he needed to insert a Norwood shunt which uses arterial pressure to help blood flow around the lungs (the Glenn shunt uses venous pressure).

Basically, what this has meant is that instead of being able to carry out the two operations as hoped, Jessica has only had the first stage (Norwood) operation and will still need the second stage (Glenn) operation at a later date. Her pulmonary blood vessels have been quite damaged and will need time to repair and re-grow before this can happen.

Because of the length and difficulties involved in the operation, and being on heart bypass for a long time, we were warned to expect a stormy ride with regards to Jessica’s recovery. Our feelings of relief after seeing her on PICU immediately after the surgery and seeing that she was stable did not last very long. We had just taken our suitcases to the family room opposite PICU when we received a phone call asking us to come back immediately. Jessica’s oxygen saturations were dropping and Mr Haw needed to open her chest immediately as this was likely to be due to a blood clot in the shunt.

As the team carried out the emergency procedure on PICU, we waited anxiously in the family room. Thankfully, we did not have too long to wait for news – after about 45 minutes, we received a call to say we could come back to PICU. Mr Haw informed us that there had been a blood clot and after removing it, Jessica’s saturations had picked back up. Jessica’s chest had been left open with a membrane covering it in case the procedure needed to be repeated, but if things remained stable, the plan would be to close the chest on Friday.

Overnight, Jessica has remained stable although we may have a bit of a rollercoaster ride as she recovers from this latest surgery. She is on the ventilator at the moment and heavily sedated but it is just so good to be able to be with her again. We will continue to post regular updates over the next few days.


  1. Gosh Louise it's incredible that they can do all this and that she is strong enough to cope with this. I hold my breath just reading it but you are there living and breathing it. This message comes with love, strength, peace and prayers god bless you all snd your very large extended families who are going through this too.

    All my love Pippa xxxxx

  2. Continuing to think and pray for you all. Lots of love from NZ. Sally (Gillian's friend).

  3. We are all praying for you and Jessica. She is such a beautiful little fighter and a very precious gift. Lots of love, Rach, Barry and Jonah xx

  4. I'm praying and I don't usually pray...LOTS of love to all three of you XXX

  5. Jessica is so strong and been through so much, she is fantastic and so are her supportive family around her.
    Roma xx

  6. Thank you all - she is a little fighter and we are so thankful that she has managed to come through another step on her journey. The support we have had from everyone has been wonderful - thank you so much x