‘Christmas is going to be magical’

Danny and Katie Phillips at home in Drayton with (left to right), Louis (18 months), Jacob (six), and Charlie (18 months)
Danny and Katie Phillips at home in Drayton with (left to right), Louis (18 months), Jacob (six), and Charlie (18 months)
Lloyd and Karen Clewer, the founders of Farm4Life, at Haslar Hospital, Gosport, where they store goods ready to send to Africa  (Picture by Habibur Rahman)

Ghana trip changed Fareham couple’s lives

  • Charlie and brother Louis were born at 38 weeks
  • Parents noticed immediately that something was wrong with Charlie
  • He spent last Christmas in hospital
  • Family looking forward to a ‘magical’ Christmas together at home this year
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As they play together with Christmas decorations twinkling above them, mum Katie proudly watches her twins Charlie and Louis. It is hard to picture a happier scene for the Phillips family.

But last Christmas was so very different.

We can’t wait to see them playing together with all their toys on Christmas morning. It’s going to be magical

Katie Phillips

Born at a 38 weeks in June, 2014, the twins were much longed-for little brothers for Jacob.

But happiness quickly turned to despair for Katie and husband Danny as they realised something was wrong with Charlie.

Katie, of Copsey Road, Drayton, says: ‘We noticed something wasn’t right as soon as Charlie was born but it wasn’t picked up for a long time.

‘It was his mobility and the way he held himself. We were very worried.’

Although the family GP recognised there was something in the couple’s concerns, it took weeks for doctors to understand and he was admitted to hospital several times with respiratory problems.

Katie, a 33-year-old teacher, says: ‘He was almost banana-shaped, bending backwards.

‘We know now that he was trying to open up his airways to breathe.

‘Every time we tried to give him a bottle he went blue because he was not getting enough oxygen.

‘He looked so poorly. I just knew something was seriously wrong.’

The family went back and forth between the hospital and GP surgery until October when a check of Charlie’s oxygen levels showed they were at just 65 per cent – when they should have been 100 per cent.

From there things moved very quickly and he was taken from Katie for probes, scans and X rays.

Little did his parents realise it was the start of a five-month stay in hospital and they would miss their first Christmas together as a family of five.

Katie says: ‘They pulled a screen around him so I couldn’t see what they were doing. It was horrible.’

Charlie had to undergo scores of tests at Queen Alexandra Hospital and Southampton General Hospital so doctors could try and get to the bottom of what was wrong with him.

For Katie and Danny, 38, it was incredibly difficult trying to juggle looking after Louis, who was just a few months old, Jacob, and being with Charlie in hospital.

‘Logistically it was really hard,’ says Katie.

‘Poor Jacob. Not only had his world been turned upside down by having two babies come along when it was just the three of us for five years.

‘But I pretty much lived in hospital with Charlie.

‘I wasn’t seeing Louis and Danny works in Lymington.

‘It was a case of just doing it. You don’t really think about it.

‘I don’t know what we would have done without our friends and family. We would have been absolute wrecks.’

Christmas was particularly painful for the family.

Katie says: ‘We were not looking forward to it at all. Fortunately the staff on Starfish ward in Southampton were amazing.

‘They absolutely loved Charlie and I felt I could leave him for a little while and he would be okay.

‘They had decorations up and a Christmas tree. They did everything they could have done to make him feel special.

‘I was able to go to the church Christingle service with Jacob and get home for the other two boys.

‘I would have loved to have had Charlie here as well. It just wasn’t the same without him.

‘We went to hospital for a couple of hours on Christmas morning and took up bacon rolls for the staff.

‘Then we went to my mum’s for lunch but it did not feel right.’

Charlie eventually left hospital in February.

He has a number of diagnoses for his problems but doctors have not been able to get to the bottom of what is causing them all. He has very low muscle tone but extensive movements which they believe is a neurological problem.

His larynx and pharynx are floppy and they close, meaning he cannot breathe properly.

At night a machine called a bi-pap blows pressurised air through his airways to keep them open.

Katie has to carry oxygen with her all the time.

She says: ‘He’s awaiting an operation for a gastrostomy which is a peg in tummy for feeds, and a muscle biopsy to try and gain the unifying diagnosis.

‘He’s also a candidate for a brand new medical research project called 100,000 genomes at Southampton General, another way of trying to find answers.’

Since February The Rainbow Trust has been helping the family, offering practical and emotional support.

Katie says the fortnightly visits from the family’s support worker has been a lifeline to them.

Now that Charlie is home they are looking forward to spending their first Christmas together.

‘Just to be home and to wake up on Christmas Day with all the boys is all we’ve ever wanted.

‘They’ve just started to interact with each other now.

‘We absolutely can’t wait to see them playing together with all their toys on Christmas morning.

‘It’s going to be magical.’

To see a video of Katie, Louis and Charlie, go to portsmouth.co.uk.

THE RAINBOW TRUST

Katie and Danny Phillips say they could not have got through the past year without the love and support of their family and doctors and nurses who treated their 17-month-old son Charlie.

But they have singled out the Rainbow Trust children’s charity as being a lifesource to them at a time when they worried how they would juggle everything.

The charity provide expert social palliative care to families when their child has a life threatening or terminal illness.

They offer emotional and practical support and assistance is available for families 24 hours a day.

The Phillips’ family’s support worker visits once a fortnight and provides a listening ear to Katie as well as bathing the children and even cooking dinner.

While Dawn looks after Jacob and Louis Katie is able to take Charlie to hospital appointments and take in all the information doctors give her, uninterrupted.

Katie, a teacher, says: ‘Dawn offers a lot of emotional support to me.

‘She asks how I am. I feel I can tell her things I don’t want to put on my family or friends. Her support for Jacob, my eldest, is brilliant. She takes him off and does activities with him.

‘When she comes round I feel I can let out a sigh of relief. Just having that extra pair of hands is so good. There are other families out there that desperately need their help but people don’t know about them. They are simply amazing. Things would be a lot tougher without Dawn.’

The charity relies almost entirely on donations. Go to rainbowtrust.org.uk.