Feeding Tube Awareness Week: Ruby's Story

This Feeding Tube Awareness Week, hear from Ruby's Mum, Sarah, about her daughter's experience using a feeding tube and how your donations have improved their time in hospital.

Ruby's Journey

'Our daughter Ruby was born on the 7th December 2016 at the Queen Elizabeth University Hospital in Glasgow.'

'Prior to her arrival, we were made aware that she had a blockage in her bowel and that she had only one kidney but, other than that, all appeared well!'

'She was born at 40 weeks at a healthy 8lbs. We were allowed a quick hug before she was whisked away for treatment.'

'Life changed indescribably from that moment onwards.'

Sarah, ruby's mum

'Ruby was diagnosed with a rare condition called Total Intestinal Aganglionosis which causes blockage in the bowel.'

'Her blockage was severe and she was very close to having a perforation. They got to her just in time.'

'An ileostomy was formed almost immediately and she was given a gastrostomy and a central line.'

'Ruby spent four months in the Neonatal Unit and a further two months on Ward 3B. Many surgeries followed to try and uncover any functioning areas of her intestine as her stoma refused to work.'

'All waste had to be pulled through her gastrostomy. Her stoma eventually started to work after a hairpin bend was straightened out and she was left with 25% of her intestine. Her ileostomy is permanent.'

'We received fabulous training from the gastro and stoma teams.'

sarah, ruby's mum

'We had to learn how to connect Ruby to her Home Parenteral Nutrition (HPN), which she was on for 20 hours a day initially, and how to navigate the day to day while she is on her line.'

'Changing her stoma bag was trickier – not the actual act of placing it on but actually keeping it on her.'

'At times we were doing 10 bag changes a day when she became mobile. At this time, her button was being used to give medication numerous times a day and to give small doses of specialised milk.'

Heading home

'We took Ruby home a few days shy of her being 6 months old.'

'It was quite overwhelming, but at the time we lived in Glasgow and knew that support was only a phone call or short car journey away.'

'We really missed everyone in 3B!'

sarah, ruby's mum

'The nursing team was fantastic. Everyone was so caring and efficient. They all knew Ruby and she loved all the attention. But it was finally time to take her home!'

Life now

'Ruby is now 7 years old and in P3!'

'Her stoma is functioning normally and we no longer give her milk. She is only on her line every second night for 12 hours.'

'She gets a lot of her calories orally which we are so happy about. There was a time where we thought she would never eat and she was living on Parenteral nutrition (PN) and ice chips.'

'As a family of food lovers, the potential that she could be nil by mouth was quite devastating. Now she loves pasta and cheese sandwiches and eats as many sweets as the next child!' 

sarah, ruby's mum

How your support helps

Thanks to your donations, Ruby has benefitted from a number of charity-funded services that have improved her experience of the children's hospital.

'We still make numerous visits back to the children's hospital in Glasgow, but fortunately the majority of them are pre-planned (other than a nasty run in with sepsis and a couple of line changes).'

'Ruby has very little fear of surgery which is down to the lovely Jane at the Teddy Hospital and also the wonderful manner of the paediatric surgeons who do so much to involve Ruby and keep her calm.'

'Somehow between them, they manage to make a surgical procedure ‘fun’?!'

'Ruby loves going back to the hospital which makes life so much easier for us. She has spent Christmas and a birthday in hospital and has enjoyed them both!'

'During our longer hospital stays when Ruby has an issue with her line, the play team comes in to their own.'

'Ruby has so much fun crafting with Claire and sometimes gets a whole toy kitchen delivered into her room for a borrow!'

'Another highlight for us was when the charity organised for some superheroes to abseil down the outside of the main hospital building. It was quite the sight!'

sarah, ruby's mum

'We are also indebted to the team of bikers who deliver supplies and take samples up to the labs on our behalf.'

'We moved down to Ayr to be close to family when Ruby was one and occasionally it can make things logistically more difficult.'

'These volunteers go above and beyond to make this aspect of our lives easier and they always do it with a smile.'

'We are so grateful to Glasgow Children's Hospital Charity for this fantastic service.'