A couple have each got feeding tube tattoos in support of their two young children who both need one.
Rebecca and Tom Golding’s daughter, Izzy, who was born in April 2018 with a rare birth defect affecting her oesophagus and trachea (airway), required life-saving surgery at Evelina Children’s Hospital in London when she was just two days old.
Rebecca, 35, of Sidcup, south east London, said that during her embryonic growth, her food pipe had unintentionally attached to her airway rather than her stomach.
“We didn’t know it at the time, but milk and saliva were going straight to her lungs. She was basically drowning.”
Izzy underwent life-saving surgery at Evelina London Children’s Hospital when she was just two days old.
She currently has a button gastrostomy, a tiny feeding tube placed right into her stomach that enables her to consume food without swallowing.
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 purées 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”
Will’s parents recognized there was a problem as soon as they brought him into the world in October 2019 because he was vomiting and having trouble breathing.
When the physicians told the parents that Will, who had sepsis at the age of two days, also needed emergency surgery, the parents were horrified.
We took a significant psychological hit when he also had to be relocated to Evelina London, said Rebecca, an NHS administrator.
“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 swallowing”
He was diagnosed with laryngomalacia, which is a birth defect where the larynx is soft and floppy.
When a baby with laryngomalacia takes a breath, the part of the larynx above the vocal cords falls in and temporarily blocks their airway.
Will has undergone surgery to make it easier for him to breathe, but he’s also not able to swallow as it results in chest infections.
So, just like his big sister, he had a button gastrostomy fitted before he was a year old.
Louisa Ferguson, a consultant in otolaryngology and cleft lip and palate surgery at Evelina London Children’s Hospital who operated on Will, 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.’
A gastrostomy is a surgically created access point from the abdomen’s skin to the stomach.
This opening is used to insert a feeding device, which allows feed to be administered without passing through the mouth or throat and directly into the stomach.
Medication and nutrients are given through the feeding tube if the patient is unable to get the nutrition they need. It is appropriate for people who must continually have assistance with feeding in order to develop and grow.
A gastrostomy can be used to drain stomach contents or to’vent’ gas from the stomach in addition to feeding and administering medications. This can lessen bloating.
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.’
For the Evelina London Children’s Charity, PE teacher Tom also rode a bike 400 miles across the Scottish Highlands.
He said: “I did 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 wanted to overcome these difficulties to express my gratitude to Evelina London for saving my children’s life. They will never understand how appreciative I am.”
“As a family, the Goldings have encountered some really big hurdles with the unique diseases that both Izzy and Will have,” said Mr. Iain Yardley, a specialist paediatric and neonatal surgeon at Evelina London Children’s Hospital who performed the operation on Izzy.
“It has been a massive privilege to be part of the huge team at Evelina London who looks after them and supports 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.”
