Charlie Eoin James Jones was born on 12 May 2009 to very proud parents, Donna and Dean Jones. At his 20 week scan, he was diagnosed as having a Coarctation of the Aorta and possibly 22q Deletion Syndrome (aka DiGeorge’s Syndrome).
A subsequent scan at 28 weeks clearer images now showed that he had Aortic Stenosis with a possible CoA. Other than his heart problems, he was growing fine in his mummy’s tummy and the doctors asked to see them again at 36 weeks.
It was at this scan that it was evident that Charlie’s heart had got significantly worse than at 28 weeks and the decision was made that it was time for him to be born. Following 22 hours of an induced labour, Charlie was born. However, Charlie was very poorly and was immediately taken to be stabilised on a resuscitation unit and then on to the Neonatal Unit at the Princess Anne Hospital, Southampton.
He was transferred by the Southampton General Hospital’s PICU retrieval team at around lunch time and at around 2pm, the decision was made that Charlie needed urgent lifesaving cardiac surgery. He was due to have cardiac catherization for Atrial Septostomy (this is essentially where they make a hole between the top two chambers of the heart) and Pulmonary Artery (both sides) banded (tiny rubber bands are placed on the tubes that come out of the heart, towards the lungs; to reduce the amount of deoxygenated (blue) blood). However, they tried for several hours to unsuccessful do this and decided the only way forward was to complete it via open heart surgery. He was 12 hours old.
Donna finally got to see her little boy 24 hours after he was born on PICU. She and Dean were told at 36 hours old that Charlie may not survive the night but thanks to the staff and determination of Charlie, he did. It was somewhere in the early days following Charlie’s birth that Donna and Dean were told that Charlie had Hypoplastic Left Heart Syndrome (HLHS) and it was explained to them what the condition meant. At 2 weeks old, they finally got to hold Charlie.
Charlie fought so hard and his first stay on PICU didn’t run smoothly but eventually, at 4 weeks old, he made up to Ocean Ward at Southampton General Hospital. This is the specialist children’s cardiac unit. His first stay on Ocean Ward was a brief one as just one week later, the surgeons and consultants decided Charlie should have Stage One. Also known as the Norwood Procedure.
Charlie had his Stage One on 15 June 2009 and he bounced back so quickly. He only stayed in PICU for 5 days this time before going back to Ocean Ward.
At 7 weeks old, he was discharged home. A day that his parents thought would never come. He was discharged with a NG Feeding Tube but true to Charlie’s character, he pulled it out 5 days later. As if to say ‘I don’t need that anymore’; the hospital were happy as he was bottle feeding well.
Charlie was discharged on various different medicines - Captopril, Aspirin, Clopidogrel, Frusemide, Domperidone and Ranitidine.
Charlie began to grow and he stunned everyone with his excellent progress. On 17 September 2009, he went for a routine Cardiac Catherization, to check the function of his heart, internally. They found that he function was good but would discuss with the surgeons about when to do Stage 2. However, like us, they anticipated it would be sooner rather than later.
Charlie had a follow up appointment at the cardiac outpatients’ clinic on 29 September 2009 and was again given the all clear. Surgery hadn’t been discussed at this point but earlier insight was it would be within a month or two.
On Thursday 1 October 2009, the day started like any other. It happened to be Dean’s day off from work so after his morning bottle, it was cuddles in bed as a family. At 9.30am, Charlie suddenly took a turn for the worse. Despite CPR by Donna, the Ambulance Crew and the resuscitation attempts by the PICU doctors in attendance at A&E; there was nothing more that could be done. Charlie was placed in his mummy’s arms as they extubated him and allowed him to become an angel and the brightest and biggest star in the sky.
Charlie’s post-mortem showed that he went in to quick heart failure caused by HLHS.
Six weeks after Charlie’s death, Donna and Dean found out they were pregnant. Sadly, Kian Aden James Jones was born at 17 ½ weeks gestation and his post-mortem should he also had HLHS but a different variant as well as other complications.
Both Charlie and Kian are buried together.
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