At our 20 week scan in May 2011, we discovered that our baby girl, Jessica, had a severe heart defect called hypoplastic left heart syndrome, where the left side of the heart is severely underdeveloped. We were initially told that she was unlikely to be suitable for surgery and that there was a significant risk that her heart would fail before she reached full term. We prayed for a miracle whilst accepting that our time with our daughter was likely to be short.
Just a few weeks later, however, we were offered the chance to have pioneering in-utero surgery to enlarge a hole in Jessica’s heart and potentially give her a chance of being suitable for post-birth surgery. This operation was successfully carried out at the John Radcliffe Hospital in Oxford when Louise was 28 weeks’ pregnant. Although this surgery carried a significant risk of causing pre-term labour, Jessica was able to make it to term and was born in September 2011. At just eight hours old, she had her first open heart surgery followed by a second operation just a week later. The combination of the two procedures carried out during this time is known as a hybrid procedure
Following the surgery, she was cared for at the paediatric intensive care unit (PICU) at Southampton General Hospital and later on Ocean Ward in Southampton and Bellhouse/Drayson Ward at the John Radcliffe. At four weeks old, Jessica came home for the first time.
At 14 weeks, Jessica had further open-heart surgery – the Norwood procedure - to help ’re-plumb’ her blood vessels and improve her heart function. Her first Christmas was spent at Southampton General Hospital recovering from this. At Easter, she was back in hospital once more for a Glenn procedure, another type of open-heart surgery.
During her first year she spent over three months in hospital and about a month of this was on the intensive care unit at Southampton.
For five years, we were able to enjoy normal family life with the occasional check-up and cardiac catheter procedure to help keep an eye on Jessica’s heart function. During those five years, we lived life to the full, enjoying lots of adventures together as a family. Jessica became a big sister to Sophie in October 2013 and was excited to learn that we were expecting another baby, nicknamed ‘Peanut’ due in August 2018.
In December 2017, Jessica had her final surgery – the Fontan procedure. She recovered well from this procedure and returned to school in February 2018. Shortly after returning to school, she started to struggle due to various viral infections. She was being treated for these and we hoped that she would recover. Sadly, she passed away suddenly on 14th April 2018. As yet, we do not know what caused her sudden passing.
Jessica brought a huge amount of joy to us throughout her short life. We will always be thankful for the six and a half years we had with her, although we will always wish we could have had more. Her half a heart overflowed with love and she was an amazingly brave little girl who lived life to the full. Her life taught us to take every day as it came, enjoy the moments we had and trust in God to strengthen us during the times when the journey was hard.
Thank you to everyone who supported us throughout Jessica’s journey and who continue to support us in our bereavement. This journey would have been a lot harder without your love and support.