Swindon mum sets up support group for children with feeding tubes

A mum from Swindon whose daughter uses a feeding tube has set up a support group for other parents to share advice and information.

Claire Wilcox was inspired to set up Beautiful Tubies after her daughter, Hope, was born prematurely and relied on a feeding tube, which she had not had to use before with her other children.

Despite support from nurses and dietitians, she felt as if there was not enough guidance or information available to support her at home and she began to feel isolated.

Claire's Facebook group can be found here: https://www.facebook.com/groups/1140266387213363

Claire said: “Not only is it scary bringing home a tiny baby but to have to feed her every three hours and having to use the tube was scary. I’ve got three beautiful children all who have different SEN needs. Hope is my 19-month-old, born with some difficulties at eight weeks premature.

“She spent six weeks and three days in the neonatal intensive care unit and she was sent home with an NG feeding tube as she was not having enough milk to put weight on. Hope is doing well now, she is delayed but slowly hitting her milestones.

“When it was time to wean Hope it seemed daunting and I quickly found out there were no weaning groups for babies with NG tubes or any feeding tubes. I carried on doing what mums do and got on with it.

“This inspired me to do something about it so I decided to set up a group for parents, carers and people with feeding tubes. I spoke to all the people involved in Hope’s care and they were on board with it, so that’s how Beautiful Tubies came about.”

She added: “Beautiful Tubies is in its early stages, it’s there to help me and others in similar situations to get a safe space to meet up and talk to each other, ask advice and receive advice and also for our little ones to meet and see others just like themselves and play together.

"Everyone involved in their care can come and talk to the group and do demonstrations and give us information."

The first meeting will be on Wednesday, July 3 at the Pattern Church on Penzance Drive at 10am and Claire hopes to meet other people in a similar situation over tea, coffee and biscuits to discuss what they hope to get from future sessions.