Milton Keynes mum whose baby was in a coma for weeks says thanks to the charity that helped her cope
Lily spent Christmas alone in hospital with her seriously ill son
A grateful MK mum has thanked the charity that supported her while her baby son was seriously ill in a coma for weeks.
Lily, a teacher from Olney, had a normal pregnancy and birth with her third child Teddy. It was only when he was 10 days old that a midwife noticed something was amiss during a routine check.
"She noticed recession in his chest. That’s when our world completely changed.," said Lily. "We were rushed round to the ward and had six doctors and consultants all staring at him trying to work out what was wrong."
Teddy was referred to the John Radcliffe Children’s Hospital in Oxford and diagnosed with interstitial lung disease.
In December his condition deteriorated after he caught a cold and he was blue lighted to hospital and put on oxygen.
“It was such a shock. Teddy was so unwell. Things got really bad on Christmas Eve when Teddy was taken into ICU," said Lily.
The baby was put in an induced coma to rest his tiny lungs. Lily stayed at his side while her firefighter husband looked after their other children at home.
“We were so terrified, and it was so difficult with the other young babies at home to cope and stay strong, we were told it was unlikely Teddy would live to be one year old. Saying it was a horrible, horrible nightmare doesn’t even do it justice, it was so much worse than you could ever imagine," said Lily.
"Emily, a play specialist using resources from Starlight - the national charity dedicated to the protection of play for seriously ill children - promptly pitched in to help.
"Emily brought books and toys in for me. I read the books to Teddy, and Emily really was a shoulder to cry on. It is so much more than ‘Play’ - and really made such a difference to Teddy and I," said Lily. "Without her and the help she gave me, it would have been such a lonely Christmas."
When Teddy was brought out of his coma, his muscles had wasted and he had no head control.
"Emily also had such amazing knowledge. When he woke from the coma, Emily gave us some tips on how I could strengthen his neck muscles. She is so knowledgeable and taught us so much as his development was set back due to the coma."
Emily adorned Teddy's hospital his cot with sensory lights, musical mobiles and homely toys to encourage his development and movement.
He was finally discharged in mid February 2020, only to face a new danger - the coronavirus pandemic.
Today Teddy is two years old and Lily had given up work to look after him full-time. She is still in contact with Starlight and Emily.
"When Teddy and I visit the hospital she still makes time to come and see us. Emily is so much more than a play specialist. Emily, quite simply, saved me," she said.
This Christmas more than half of all UK hospitals will be without the budget or resources to make play happen for the seriously ill children in their care. When facing treatment away from home and separated from their friends and family, this is the time that play is most important.
Starlight is calling on the public to help bring play to some of the many children who will be in hospital during the festive season.
The charity is highlighting how play and the role of Health Play Specialists are integral to the delivery of medical treatment for seriously ill children in hospital, and never more so at Christmas - a time that should be happy, full of excitement and spent with family.
"Play can help a child cope with the anxiety of their treatment – and reduce the long-term emotional damage of serious illness. However, despite the significant impact of play for seriously ill children, a recent report from Starlight showed the huge inequalities in the provision of play in hospital settings. For many seriously ill children, they will receive no play services whilst in hospital, depending on where they are treated," said a spokesman for the charity.
Starlight’s research shows half of all hospitals in the UK have no budget for play and a third of hospitals do not have dedicated play professionals. The charity is therefore committed to providing essential toys, games, books and immersive entertainment to an additional 300 hospitals that don’t currently have play resources and are most urgently in need of support.
As 2021 comes to an end, Starlight is urging people to back their Time to Play Christmas campaign.
Cathy Gilman the charity's CEOt said, “Every day, children across the UK endure hospital treatments away from home, separated from family, and the anxiety that comes with facing serious illness. This will continue through Christmas.
“Play can free a seriously ill child from that fear and anxiety for a few precious hours. However, more than half of all UK hospitals don’t have the budget to make play happen for their children. It is shocking to see the inequalities that exist in hospital settings. This is why we aim to raise funds to provide 300 more hospitals with books, toys and resources to help seriously ill children - and we are urging the public to help us do this”.
Cathy added: “Play is so important, and the Play Specialists are incredibly dedicated. We simply need more resources, budget and recognition of the importance of play and how it can completely change the hospital experience for seriously ill children”.
You can find out more about Starlight’s Time to Play campaign and make a donation here,