Little Heroes - Amélie O

Amélie has been in hospital since the day she was born, but thanks to life-saving treatment at Great Ormond Street Hospital (GOSH), she will soon be able to go home with her family.

A resilient child

“She’s the most resilient child, as lots of children in GOSH are," says Amélie's mum, Natasha. "She’s happy, she smiles all the time and she’s got a lovely little personality. I think everyone who meets her really falls in love with her."

Amélie, aged one, was diagnosed with a laryngeal cleft at four weeks old. The rare condition means that when she eats or drinks, it passes into her airway instead of her stomach. 

“We never had an indication that anything was wrong throughout the pregnancy. Our scans were normal and she had a very strong heartbeat,” says Natasha. 

But after being born six weeks prematurely, Amélie would start gagging and going a grey-blue colour when Natasha tried to feed her. 

Amelie O, a little hero at GOSH

Getting the diagnosis 

"She was being fed through a tube into her stomach and she wasn’t really putting on any weight," continues Natasha. "But until that point we had just thought it was because she was premature. "Hers is one of the more severe cleft issues. When you read the consequences of that and what can happen, it makes your mind go in a complete spin and it’s hard to process. We didn’t know whether we’d have her here today or not, it was quite an emotional time. 

“I had a four-year-old little boy at the time to look after and trying to explain to him why his little sister was in hospital was quite tough. I had family and friends asking questions, which were hard to answer when we didn’t even know what was going on ourselves." 

Because of the rarity of Amélie's condition, she was referred to GOSH for specialist treatment. 

Coming to GOSH 

“You hear about Great Ormond Street, it’s an amazing hospital," says Natasha. 

“We met our consultant who immediately put us at ease. She explained what the condition was and what it meant. 

“My husband and I were relieved. We felt like we had someone we trusted, and she was very open and honest. 

"The nurses and everyone that works here are so loving and caring, not just to Amélie but also to us as parents. They’re always looking out for you, they ask the right questions, and they really care for you. 

"Everyone from the cleaners to the consultants say hello to her, make that effort with her, and that makes a difference. They’re not just here as a job, they’re here because they really care." 

Next steps 

"The first part of our journey was really tough, We were in intensive care for a very long period," says Natasha. “I think people who work there are amazing, to deal with that amount of pressure and stress every day. 

"During our time in intensive care, I was still wondering whether our daughter would make it. But then with the subsequent operations, she got better and stronger." 

Amélie later moved onto Kangaroo Ward where she was able to focus on her development. 

“We underestimate how much children who have been in hospital all their lives haven’t been exposed to," says Natasha. "It amazes me when we go outside that she gets excited by a pigeon or a balloon. 

"She’s got a really nice room, we’ve set it up with a little play space and as soon as she wakes up in the morning she plays with the play worker who has been invaluable in helping Amélie reach her development milestones. We try to encourage her to do the things she should be doing, like peekaboo, blowing bubbles, singing hands." 

Looking to the future 

Because of the care she has received at GOSH, Amélie has recently been discharged from hospital. "I couldn’t wait to have her at home. I think we hadn’t allowed ourselves to feel like it's happening," says Natasha.

"We know we’ve got many years of procedures to come but right now the focus is on getting her settled, getting her into nursery, and building a normal family life. 

"I think we forget how little she is and that her body can only cope with so many operations. When she’s bigger and stronger they’ll have a look at what her airway is doing, work on that, and work on her vocal cords. 

"In the long term, they’ll try to remove the breathing apparatus she needs currently." 

Supporting Great Ormond Street Hospital Children's Charity

We raise money to enable GOSH to provide world-class care for its young patients and families in many ways, including supporting expertise in rare conditions affecting children like Amélie. The dedicated team of doctors and nurses at GOSH interact with more than 160 patients and siblings each day. 

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