Parents get feeding tube tattoo to match their children

The Golding family

Parents, Rebecca and Tom Golding, have tattooed images of a feeding tube on to their stomachs to support their two children who have both been fitted with one.

Daughter, Izzy, was born in April 2018 with trache-oesophageal fistula and oesophageal atresia. This rare, life-threatening birth defect affects a baby's oesophagus (food pipe) and trachea (airway), requiring emergency surgery as a newborn baby. 

Rebecca, from Sidcup in south east London, said: “During her development in the womb, her food pipe mistakenly connected to her airway instead of to her stomach. We didn’t know it at the time, but milk and saliva were going straight to her lungs, which meant she was basically drowning.”

At just two days old, Izzy underwent emergency life-saving surgery at Evelina London Children’s Hospital.

Rebecca said: “She was admitted to hospital 16 times in her first year and even now can only eat what you would give to an eight-month-old, like purees and some fruits. She can’t swallow fluid and she can’t eat sandwiches, chicken nuggets or ice cream – the things that other four year olds like.” 

Izzy has a button gastrostomy, which is a small feeding tube inserted directly into her stomach so that she can receive fluid without swallowing. It gives her a safe and long-term method of getting nutrition. The button is held in place by a balloon inside her stomach which is inflated with water.

When the couple’s son, Will, was born in October 2019, they immediately knew that something was wrong as he couldn’t stop vomiting and had trouble breathing.

He was diagnosed with sepsis, a life-threatening reaction to an infection, and was transferred to Evelina London Children’s Hospital for specialist treatment at just two days old.

Rebecca said: “We took a massive psychological hit when he too had to be transferred to Evelina London. He stopped breathing twice and had to be resuscitated – it was a really frightening time. Will spent three months in the hospital, where multiple tests were carried out which revealed that he too had a problem with his swallow.”

Will was diagnosed with laryngomalacia, a birth defect where the larynx (voice box) is soft and floppy. When the baby takes a breath, the part of the larynx above the vocal cords falls in and temporarily blocks the baby's airway.

Will underwent surgery to make it easier for him to breathe but is still unable to swallow liquid as it leads to chest infections. He had a button gastrostomy fitted, just like his sister, in August 2020 at 10 months old.

Louisa Ferguson is consultant in otolaryngology and cleft lip and palate, who operated on Will. She said: “It is quite uncommon for two children in the same family to have such complex swallowing issues and for both to need a button gastrostomy. At Evelina London, we have a huge team of specialists who are experienced in dealing with complex and rare conditions, so we’ll continue to be there for Will and Izzy for as long as they need us.”

Rebecca said: “They both have a button gastrostomy so Tom and I decided to get matching tattoos. We wanted to symbolise what we have been through as a family and show Izzy and Will that having a button is something to be proud of. Izzy is obsessed with the tattoos, always asking to see them and saying ‘now we are all matching’, and Will has expressed his disappointment that ours don’t move!”

Iain Yardley, a consultant paediatric and neonatal surgeon, operated on Izzy. He said: “As a family, the Goldings have faced some really significant challenges with the complex conditions that both Izzy and Will have. It has been a massive privilege to be part of the huge team at Evelina London who look after them and support them as a family. Watching children like Izzy and Will overcome these challenges to grow up and blossom is why we do what we do.”

To thank the team who looked after Izzy and Will, dad Tom has completed a 400 mile bike ride across the Scottish Highlands to raise money for Evelina London Children’s Charity.

Louisa Ferguson continued: “We are so grateful to families like Tom and Rebecca Golding who go above and beyond to support Evelina London so we can be there for even more children in the future.”

Tom said: “I am doing the ride for three reasons. Firstly to raise awareness of Evelina London Children’s Hospital and what they do – they are unsung heroes who save lives every day. Secondly, to raise as much money as possible for this incredible hospital so that those who work there can continue to carry out amazing treatment for children who need it most. Finally, I want to put myself through these tough challenges in order to thank Evelina London for saving my children’s lives – they will never know how grateful I am.”