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 14 November 2011

Cardiac catheter investigation

We are now back on Ocean Ward in Southampton as Jessica was admitted on Sunday ready for her catheter investigation today. It was a busy weekend for Jessica as we were at a fundraising concert and dinner in Southampton on Saturday night – Michael was helping out with sound at the event – and so Jessica had her first sleepover as we stayed with our friends Nick and Charlie overnight.

All the excitement of the concert meant that Jessica had a bit of a late night and with all the checks that had to be carried out after we arrived on the ward, didn’t manage to get much sleep until late afternoon and so unsurprisingly was quite vocal in her objections to being poked and prodded. She had to have a chest x-ray, a heart scan and ECG as well as having blood taken so it was quite an eventful day all round for her.

We were second on the list for theatre so Jessica was taken down to the cath lab around 11.45am. We were able to go with her to the anaesthetic room and so Louise could cuddle and sing to Jessica whilst she was given the general anaesthetic. It was quite an anxious wait whilst the catheter procedure was taking place, but after a couple of hours, Jessica was finally ready to be brought back to the ward from recovery. She was doing well, although needed a little bit of extra oxygen as her oxygen saturation levels were a little lower than usual following the procedure.

It was a while before Dr Gnanapragasam came to see us to discuss the plan. The catheter procedure had gone well – the stent in her duct was still open and there was good flow through it. The bands on the arteries in Jessica’s lungs were looking fairly tight which was to be expected as she was growing well. Due to the tightness of the bands, Dr Gnanapragasam was unable to measure the pressures in the lung arteries directly as they didn’t want to risk blocking them trying to feed the needle through the narrow bands; however they do not appear to be too high when measured indirectly. The overall anatomy and cardiac function looks fine for now. There is much discussion needing to take place within the team as to exactly what they will do next and when. As she grows, the fixed bands will restrict the flow to her lungs and she will gradually become more blue in colour and that will dictate how long they can leave it before she needs to be operated on. This would probably be around mid December or possibly into January.

However there is a choice of whether to do the next phase in one or two stages. She didn’t have the Norwood procedure during her first stay in hospital, but rather a ‘hybrid’ procedure which was in effect the more minor half of the Norwood type operation. This was mostly due to not wanting to risk major reconstructive surgery on her when she was so small and undergoing physiological changes of neonatal development. The next phase will require the major Norwood type procedure and could also include the following Glenn stage as well in a combined operation. Her growth and tightening bands will determine how long they can leave her before the Norwood must be undertaken but they would normally want to leave the Glenn till a bit later. They need to weigh up the risks of two separate stages versus one more major operation performed slightly early (in terms of the Glenn).

We are hoping to go home sometime tomorrow afternoon and will keep you updated with further news about the next stage when we know more. The team here will be discussing the plan with our consultants in Oxford at their next team meeting in a week’s time and hopefully we will find out more when we next have our check-up in Oxford.

Thank you to everyone for keeping us in your thoughts and prayers once again. We have taken another small step along Jessica’s journey again today.

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