Family stories

Tiger-Lily’s story

Meet Tiger-Lily! At just six weeks old, Tiger-Lily was fitted with a tracheostomy after doctors discovered she had Congenital Central Hypoventilation Syndrome (CCHS), which means she stops breathing as soon as she falls asleep and needs constant supervision. The condition is so rare that it’s thought to only affect 100 families in the UK. For mum, Vicky, and dad, Ricky, it’s been a journey they never expected to go on. But with the guidance and support of Chestnut Tree House they live life to the full and enjoy every moment with their cheeky, sociable and fun-loving little girl.

Vicky tells their story

Montage of pictures of Tiger-Lily and her family

“It was touch and go from the moment Tiger-Lily was born”

Minutes after Tiger-Lily was born, she turned blue and was whisked away. I still remember the silence. She was surrounded by doctors, and no one could tell us what was going on. Her dad and I were in complete shock – it was our first baby together, and the pregnancy and birth had all gone smoothly. The next time we saw Tiger-Lily she was in intensive care with wires everywhere and a tube to help her breathe. I thought we’d be in hospital for a week while they worked out what was going on – I had no idea that it would be seven months before we’d go home again.

It wasn’t until Tiger-Lily was a month old that she was diagnosed with CCHS. The condition affects how the autonomic nervous system manages breathing. Basically, her brain wasn’t telling her body to breathe when she was asleep. And at six weeks old she was fitted with a tracheostomy and fully ventilated.

Tiger Lily and a montage of animals

“I was fearful of everything”

We were desperate to get home, but little did I know that would be when the real hard work would start. Suddenly, we were on our own with a baby who was on a ventilator every second of the day and needed loads of equipment and constant monitoring to keep her alive. I’d barely left her side when we had a visit from Ruth, a Chestnut Tree House community nurse. She told us about the support that was available for us at home, but I turned down her offer. I was determined that I would be able to look after Tiger-Lily on my own. Ruth was understanding and told me that the hospice would be there if I changed my mind.

Tiger-Lily as a baby and her mum

In the weeks that followed, my world shrank. I’d gone from being a busy hairdresser with loads of clients to feeling like I had a new career as a nurse. I realised I hadn’t left the house for a whole month. That’s when I picked up the phone to Chestnut Tree House.

“Accepting help made such a difference to our lives”

With no support network of friends or family around because we’d only just moved house, visits from Chestnut Tree House nurses became a lifeline. I could step out the door knowing Tiger-Lily was safe and happy. One day I drove into town to get my nails done and I’ll never forget just walking around, breathing in the air, and thinking – so this is what the world is like!

Four years on, and I am still so grateful for those moments. Tiger-Lily now has a Chestnut nurse called Laurie who she adores. Before Laurie even steps through the door, Tiger-Lily will be looking in her bag as she knows it’s full of games, arts and crafts and other fun stuff. And while they play and Laurie looks after all her medical needs, Ricky and I might go out for dinner. Just being able to have a long shower, listen to music and take my time getting ready is such a treat.

Montage of pictures of Tiger-Lily and her mum

“Tiger-Lily is full of energy and loves to explore’”

Now Covid is less of a worry and Tiger-Lily is a bit older, she enjoys going out for the day with Laurie. There’s always a lot of medical equipment to pack, but just like any four-year-old, Tiger-Lily loves to cuddle the guinea pigs at Blackberry Farm, run through the fountains at Princes Park or say hello to all the animals at Knockhatch Adventure Park.

She also looks forward to visiting Chestnut Tree House. At first, I felt massive guilt dropping her off at the hospice, but she’s totally spoilt there and has loads of kids to play with. She loves smashing the drums in the music room, painting with the activities team and going on treasure hunts in the woodland walk. And when we pick her up a few days later, we’ll all have lunch together and chat and play with other families. The last time we were there, it was amazing to meet another family with a baby who also has CCHS. The condition is so rare that being able to share stories and get support from other parents means a lot.

Tiger-Lily being a superstar

For any other families who have little ones with CCHS, I want them to know it does get easier. As Tiger-Lily has got older she only needs to be on her ventilator at night and there’s nothing that she doesn’t do – I take her horse riding, to festivals and loves playing with friends.

“It’s been a crazy journey, but we’ve been supported all the way”

There’s still a lot to think about and sometimes we do end up in hospital as her tracheostomy makes her vulnerable to infections, but every year she gets a bit stronger. She’ll always have to live with the condition, but there may come a day where she doesn’t need her tracheostomy and can just wear a ventilation mask at night when she’s sleeping.

Whatever the future has in store, it’s comforting to know that we have the support and expertise of Chestnut Tree House to guide us through.

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