A little boy who was born “inside out” now spends up to 20 hours a day connected to a machine so he can stay alive.
Henley Mountford-Farmer was diagnosed with gastroschisis – a birth defect that meant his intestines were outside of his body on his stomach when he was born – in August 2019. The five-year-old was left with less than 50 per cent of his bowel – after part of it “died” and had to be cut away during an emergency surgery just two hours after he was delivered.
Despite being able to eat and drink orally, Henley is left in pain from passing water or acid up to 22 times a day – with his bowels unable to digest food properly. Despite his rare condition, the youngster is determined to “live like a normal boy”, and his family is committed to helping him achieve his dreams.
Henry cannot survive without a total parenteral nutrition (TPN) drip, which feeds via a central line into his heart the essential nutrients and fats he isn’t able to absorb from food. The litre-sized bag is in a little suitcase that Henley carries around everywhere. His mum, Kali, 32, who lives in Maidstone, Kent, said her son takes “everything in his stride” but needs help to enjoy his passions.
She said: “If he can make himself like normal, he will do that, despite the pain. If he is not well enough I will carry him and the bag. It’s just me and him and we are very, very close – I dote on him, he dotes on me. Out and about, he’s happy, smiley, caring, loving, cares about everything and everyone else and takes everything in his stride.
“You will never see him look sad or in pain but at home, it’s: ‘Mummy my tummy hurts, the pain’s too much’.” Henley has multiple conditions including short-gut syndrome, ketonic hypoglycaemia, a growth hormone deficiency, multiple skin allergies, eczema, hyper mobility, enlarged liver and spleen and can’t control his body temperature, alongside PTSD from everything he has been through and still goes through.
He is prone to infection and suffers from febrile convulsions, fatigue, dehydration and anemia. Despite this, his mum pushed for Henley – who wants to feel like a “normal” boy – to attend mainstream school, but he has only been able to make nine days this year so far because he often feels unwell or has to visit hospital.
Henley suffers quite high amounts of pain on a daily basis but his mum says he has a very high pain threshold. She said: “Out and about, he’s happy, smiley, caring, loving, cares about everything and everyone else and takes everything in his stride. You will never see him look sad or in pain but at home, it’s: ‘Mummy my tummy hurts, the pain’s too much’.
“Or he will be on the floor or sofa and won’t move as he is in absolute agony and won’t want to leave the house, just snuggle. It’s not nice to watch. Even though he’s only five he is very smart and very understanding. He knows he’s got a condition. He gets it but to the outside he just wants to be seen as a normal boy even though when he comes home he is drained, doesn’t feel well and is struggling.”
A surgery in September to try and lengthen his bowels had complications which has led to Henley struggling with more pain, internal bleeding and hospital trips. It put a stop to the family’s much-loved camping holidays, where they would hike and see waterfalls and sunsets.
Kali said: “Henley can’t walk much so if he’s tired I will chuck him on my back so he can see everything. If he is too poorly I would be able to get him in the garden. We went to Scotland last year camping and stayed a couple nights with my friend’s mum and dad who had chickens on their land.
“Henley was first of all terrified of them but the next day he was going: ‘Can I go see the chickens?’ He fed them, collected their eggs and they were very friendly. They sat down and wanted him to pick them up. Since then all I have got is: ‘Can I have chickens?’” The pair initially lived in a flat but moved last year into a house with a garden to provide more space for his medical equipment.
Kali said: “He can’t eat dairy or meat but wants to collect the eggs to give to his mum and neighbours, he says.” His conditions mean Henley requires around-the-clock care – hourly checks throughout the night by his mum or carers who visit six times a week. He needs medication for the pain he is in, nappy changes and checks to ensure he hasn’t tangled himself in the wires connected to his body.
Unfortunately, the TPN drip comes with side effects including organ damage, with some users ending up needing liver transplants. Kali said: “We have got to take each day as it comes. It’s hard but as long as he’s happy and smiling that’s all I can ask for, is to see a smile on his face and make each day for him better.
“My friends and my dad live in Essex and so most of my life, I do it all on my own. You have got to be trained to deal with Henley as well and I’m the only who is. Where I go, he goes and wherever he goes, I do. He misses out on a lot. There’s no social life, no girls’ nights, but it doesn’t actually bother me because my whole world is him.
“I wouldn’t change it for the world; to me, he is a miracle and my inspiration.” Kali admits she is “stubborn” and wants to try to do everything on her own but said she was “so grateful” for the support of her neighbourhood. Kali – who is unable to work – said: “It feels amazing. I’ve only lived in Leeds Village since last May and they absolutely idolise Henley and dote on him.
“They think he’s incredible and say the same about me with everything we do. To know there are amazing people like that out there who want to do whatever they can to try to help is heart-warming.”
A GoFundMe campaign has been organised by the family’s neighbours, who wanted to help Kali and her son build Henley’s dream garden.
He would like a soft area in case he falls as he has weaker bones, a seating area for him and his mum and a barbecue area where they can do the camping activities they liked to do before he became too sick. He would also like a special seating area just for him next to the coop to watch the chickens.
Anyone who wishes to donate to Henley’s family’s campaign can do so on GoFundMe.
