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care for so long it had become accepted Arlo would be staying indefinitely.”
The couple begged intensive care doctors at South London’s Kings College Hospital, Denmark Hill, to give the youngster the chance of a normal home life.
Tummy
Arlo’s oxygen comes from a giant machine that sucks in air and turns it into pure oxygen which is then pushed into his lungs by a ventilator.
He was born a healthy 7lb 1oz but developed breathing difficulties. After tests, medics hit on the rare diagnosis of surfactant ABCA3 deficiency.
Dad Mike said: “It’s one of the rarest forms of child interstitial lung disease. His specific strain is so rare it has never been seen in the UK before, with only 200 documented cases globally.”
Arlo’s situation will not change without a lung transplant when he is older. Chantal said: “In every other way Arlo is perfect. It’s just his lungs. We hope he might one day go to school on oxygen but we don’t really know. He may have to be home schooled.” Mike said: “The hospital have been absolutely brilliant with us.
“But I think we put in a very strong case that we could safely bring Arlo home and were prepared to do all we could to make it happen.”
Chantal said: “We’ve learned everything we need to know about feeding him through a tube into his tummy and how to resuscitate him if anything goes wrong and how to give him his drugs.
“At the moment he’s confined to the home but there’s a chance we might be able to get him out on short journeys. His oxygen needs are so great we’ll need to take out at least six bottles for it to be safe.” Before Arlo arrived home in Chislehurst, Kent, engineers installed four concentrator oxygen machines – two upstairs and two downstairs – so he is always plugged in. Chantal said: “He has a 15- metre tube that allows him to move around without having to be stuck in one place. In hospital he was stuck in one little corner. Here he can reach out further. He’s not walking yet but we hope that will follow soon. “Being in hospital has left him behind on that front but now we hope things will change.” Dr Akash Deep, head of paediatric intensive care at King’s College said: “Arlo is such a happy smiley baby who we will miss seeing on the ward. If ever I felt down I would go and see Arlo and he would give me a lift.
“He has the most magnificent parents who were absolutely devoted to his cause.
“We’ll always act in the best interests of a child but we were convinced by his mum and dad that they could cope at home and that Arlo would be safe.”
Arlo breathes through a tube which can be briefly adjusted so he can talk.
Chantal said: “We’re delighted to have him home. The amazing thing is, that despite his breathing problems, he’s a normal kid. We’re going to give him as many chances as possible.
“At first we were told he would always been in hospital. So for this to happen is our Christmas miracle.”