When baby Louis was born with a rare skin disorder, his parents began a journey they never thought they would take.
Now, however, Louis has finally come home after three weeks in hospital, just in time for England’s first match in the World Cup, and to mark the occasion, mum and dad even got him a very special onesie for his ‘going home’ outfit.
Louis was born on Monday, October 31, at the University Hospital of North Tees to parents 36-year-old teaching assistant Leanne Moffitt and 38-year-old stay-at-home dad Ryan Baxter from Yarm.
When their midwifery team spotted what looked like a burn on Louis’ leg, he was admitted to the hospital’s special care baby unit, which looks after premature and poorly full-term babies.
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After some investigation, Louis was found to have epidermolysis bullosa (EB), a rare skin disorder that causes the skin, both internally and externally, to be very fragile.
The lifelong condition means that any trauma or friction to the skin can cause painful blisters.
Mum Leanne said: “It was a real shock finding out. It’s super rare so we hadn’t heard of it before.
“But the support we’ve had at North Tees has been amazing – we wouldn’t be home right now if it wasn’t for the team up there.”
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A specialist EB team visited the family in order to teach them about the special care that Louis needs.
This includes how to safely pop blisters, dress his wounds and how to manage his pain.
Leanne and Ryan very quickly and confidently rose to the occasion, learning as much as possible about the condition and how best to prevent break outs, for example, dressing Louis in soft clothing without seams, using soft teats if bottle feeding and taking care in how Louis is moved and where he sleeps.
Leanne continued: “At first it was daunting – all the lotions and potions and different kinds of bandages – but now I feel a lot more confident. And dad is a dab hand at cutting the bandages. He stays up at night doing it so we’re ready.
“But Louis’ not just a baby with EB. He’s more than that, he’s a beautiful little boy and he’ll have every opportunity and be able to do anything he wants.”
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On Monday 21 November, exactly three weeks to the day Louis was born, he left the special care baby unit and made the journey to his home in Yarm to join his elder brother and sister; 11-year-old Sam and 2-year-old Willow.
Dad Ryan said: “We could not, for a second, fault the teams at North Tees and the specialist EB team who visited.
“They’ve not just looked after Louis but they’ve looked after us as well.
“And the team on the special care baby unit all got really attached to Louis and even got a bit emotional when he left. It’s a little family up there – they’re just too amazing to put into words.”
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While the special care baby unit at the University Hospital of North Tees is more widely known for looking after premature babies, it also cares for full-term newborns who are very poorly, like Louis.
It is open 24-hours a day, seven-days a week to encourage parents to spend as much time with their baby as possible.
Janice Atkinson, ward manager on the special care baby unit, said: “We’re so proud of Leanne and Ryan – they very quickly rose to the challenge they faced and became absolute experts in Louis’ specialised care.
“They’ve gone from learning about a condition they’d never heard of to this week being able to take Louis home after three weeks in hospital, ready for their continued journey ahead.
“We’ll miss seeing Louis’ little face but we know he is in the best possible hands with mum and dad.”
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