Home in time for Christmas

Baby Thomas King whilst at Evelina London.

Thomas King was born with a heart defect and relies on specialist equipment to breathe. After spending all his life in hospital he was able to go home just in time for Christmas and his first birthday.

Thomas has been cared for at Evelina London Children’s Hospital for most of his young life. His parents, Emma Page and Ryan King, from Dover in Kent, were delighted when the specialist teams said he was well enough to go to home earlier this month. They celebrated his first birthday on 21 December and spent Christmas at home with relatives.

Emma says: “We had been at Evelina London for so long that it started to feel like home and the staff there became our family. So even though it was lovely to go home, it was also hard to leave. On our last day the play specialists threw us a leaving party and we thanked everyone – it was a very emotional send off. We will miss them all.”

Thomas was born with a severe heart condition, half of his heart was underdeveloped. The right side, including the chambers, valves and blood vessels were small, meaning he was not able to deliver enough blood to his lungs. The condition can be known as ‘Hypoplastic Right Heart Syndrome’.

He will need a series of three complex heart operations, the first took place shortly after birth and the last is expected to take place around the age of three.

Thomas was given a 30% chance of survival and weighed less than four pounds when he was born. He spent his first Christmas in Evelina London’s neonatal unit. When he was a month old he had the first stage operation procedure, where blood flow was directed to his lungs through a small tube known as a shunt.

Ryan says: “Having Thomas home for Christmas is the best present we could wish for. It’s wonderful to think how far he has come since last year. We will never know how long he will be here so our time together is precious and we want to create memories as a family.”

In June Thomas had surgery to insert a plastic tube, known as a tracheostomy, into his windpipe to create an artificial airway helping him to breathe.

Emma said: “At first we didn’t want him to have a tracheostomy because we didn’t class him as severely ill and that’s the impression having one gave. I don’t think we realised how seriously ill he was at the time - we were in a bubble.

“As soon as we saw him after he left the theatre and he was more alert, playful and had a better colour. He seemed more like a healthy baby – it was an amazing feeling and we were so glad he had it. Since then Thomas has got much better and he has loved interacting with the team at Evelina London, from the physiotherapists and the speech and language therapists to the play specialists and music therapists. He really benefitted from the music and had great fun playing with the guitar and drums.”

The specialist team at Evelina London trained Emma and Ryan how to use the ventilation equipment safely to prepare them for when Thomas was able to go home. The family needed to have a care package in place because children on long-term ventilation need to be cared for 24 hours a day in case there are any blockages in the breathing tubes.

They also had their home assessed to ensure it was suitable for Thomas’s needs and his equipment before he could be discharged. It is likely that Thomas will need his tracheostomy at least until he starts school.

Emma said: “We can’t fault the care he has received and the staff were always there for us all. Even after his first heart surgery, his surgeon phoned us at 11pm from home to check how he was. It’s not just a job – the teams here really care. He adores the nurses and they love him as if he was their own. It’s an amazing place.”

Dr Sadia Quyam, consultant paediatric cardiologist at Evelina London, was one of the team of specialists who looked after Thomas. She said: “Thomas and his family have been through a great deal, his parents have been incredibly patient and brave throughout his stay.  Seeing Thomas so much better is, of course, very rewarding and I’m excited for his family that he can finally go home.  It’s been a privilege to be involved in his care.

“I’ll continue to see the family in our outreach clinic in Margate and Thomas still has challenges to face, but he is certainly getting stronger by the day.

“At Evelina London it’s a real team effort. We are proud of the care we deliver, which is made possible by dedicated and skilled individuals who are able to make a potentially stressful and scary experience as pleasant as it can be.”

Find out more about heart services (cardiology) at Evelina London.