Teen with severe eating disorder forced to undergo emergency liver transplant
A worried mum has said her son is "lucky" to still be alive after he needed an emergency liver transplant due to the impact his severe eating disorder had on him.
Louie Noman has ARFID (Avoidant Restrictive Food Intake Disorder) and cannot eat certain foods. Sometimes not eating at all when he is anxious, the 17-year-old mainly only eats certain brands of crisps, ice cream, and McDonald's fries.
The teenager, from North Bransholme in Kingston upon Hull, became seriously sick as a result of not eating and doctors found he had acute liver failure. After turning a "bright yellow" colour, Louie was rushed to Leeds General Infirmary for an emergency transplant, reports Hull Live.
His mum Natalie Noman, 37, said: "Louie is very brave. I'm very proud of him still trying to smile through it all, he's an absolute miracle. I would never want another child to go through what he's had to go through, that's why I would like to raise some awareness. It's been a really traumatic, terrifying time for all involved."
The mum has been fearful for her son's health since he was in primary school. However, doctors would only tell him to eat and prescribe vitamin supplements he was unable to ingest. "Telling someone with an eating disorder to eat is like telling someone who can't walk to get out of a wheelchair," Natalie said.
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Louie needed an emergency liver transplant (Natalie Noman/submitted)Natalie claims there is no ARFID support in Hull and says she struggled to get proper medical advice. "He was referred to a dietician and she said she'd write to the doctor and say he had autistic traits," she said. "When his bloods came back he was anaemic and had other deficiencies.
"Louie tries supplements, we try everything, but it was really difficult. His health has just deteriorated for years and years. In times of stress he can't eat at all. He always looked pale with dark bags under his eyes and he wore baggy clothes to hide how skinny he was."
Natalie worked with Louie to help him with his sensory issues so he could tolerate different smells but he was still unable to eat most foods. She also tried vitamin patches on Louie's skin but they didn't help. Natalie asked doctors if her son could be fed through a PEG tube in the stomach, but they refused because the teenager would have "no quality of life". Following the liver transplant in August, Louie will now have to take organ rejection medication for the rest of his life.
Louie's mum Natalie believes her son is lucky to be alive (Natalie Noman/submitted)Louie now does have a PEG tube which allows him to receive food and medicine through his stomach. But the experience has been "traumatic", according to Natalie. "CAMHS won't take it on because it's considered behavioural rather than mental health," she said. "And the doctor just told him 'You've got to eat' which is unfair for an ARFID sufferer. They [doctors] need to know when to medically intervene. We are really lucky to still have him because we could have lost him."
Louie is now at home but regularly makes trips to Leeds for hospital appointments. A spokesman for the NHS Humber and North Yorkshire Integrated Care Board (ICB) said: "We are really sorry to hear about Louie’s illness earlier this year. We take reports like this very seriously and would welcome the opportunity to work with Louie, his mother and their GP practice to understand more about their experience if they are happy for us to."
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