Jessie May Family: Phoenix

Phoenix is 11 months old and lives in Swindon with his mum Clare, dad Damien and 9 year old sister Faye.

When Clare was pregnant with Phoenix, she found out during her 20 week scan that something wasn’t quite right. During another scan, two days later, doctors confirmed he had Hypoplastic Left Heart Syndrome (HLHS).

This means Phoenix would be born with a single ventricle instead of two, and that the left side of his heart would not form correctly. He would suffer from a birth defect which affects normal blood flow through the heart and mean the right side of his heart would have to work twice as hard.

At first, Clare and Damien were told it was unlikely Phoenix would live for very long, but a later prognosis found while he was life limited, he could live much longer than they feared.

Phoenix was born on 12th August 2017 through a planned induced labour in hospital. He was taken straight to the NICU (Neonatal Intensive Care Unit) where he stayed for the first 6 weeks of his life. He had his first open heart operation at 4 days old, and would later to go on to have 3 more, alongside other operations.

After his first surgery, Phoenix had a heart attack and had to be put on a life machine, where he then suffered from a stroke. While Phoenix recovered and was able to go home for 5 weeks, he then had to spend 6 months in and out of hospital for more open heart surgery.

Phoenix is now happy at home with his family but has to take medication 13 times a day, and is pump-fed milk and given oxygen overnight. Clare was referred to Jessie May in hospital and now has Jessie May nurses visit their home offering respite care twice a month.

Clare said: “We chose the name Phoenix mainly because we just wanted something different that would stand out. That was before we knew about his condition – and it now seems very fitting! It’s very optimistic, just like him.”

“Phoenix absolutely loves it when Jessie May come to visit. He recognises them and lights up with a big smile when they come in the room! The respite visits are amazing for me too. They give me a chance to have a break, and go shopping, get my nails done and see my mum for a few hours. Even just to have the time to clean the house is a real help.”

Phoenix’s sister Faye likes to help out at home, and always offers to change her brother’s nappies! She has had to take on some very important responsibilities since Phoenix was born, and her parents are very proud to see her act as a young carer to help support her younger brother.

Damien said: “When Phoenix was first born, we had some very difficult and traumatic times, when we were frequently told he might not make it through the night.

“Now we are back home and he’s in far better health, although he’s got some problems with his lungs, but it’s become the norm – with the help of Jessie May. We’re taking every day as it comes. The surgery Phoenix has undergone is extremely complicated but relatively new too, so there aren’t many recent or accurate statistics to suggest his outlook, but we obviously hope for the best.

“He’s an amazing boy who loves life.”

Jessie May Nurse Annette said: “During our visits we have lots of fun! We play with some of Phoenix’s favourite toys, go out for walks and have cuddles.

“This time is gratefully received by the family as it gives Mum a chance to have a break from Phoenix’s demanding daily routine of tube feeding, regular medications and the constant supervision he requires due the unpredictability of his health condition which leaves Mum with little opportunity to get on with daily tasks.”

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