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Darcie and Hunter's Story

Darcie and Hunter both have vocal cord paralysis and have had a tube inserted through their neck into their throat to keep their airway open

When Hunter was born we were devastated. It was obvious straight away he had the same condition as his sister Darcie.

It was a huge blow to me and Ben because we had thought, had hoped, that Darcie’s condition was just a fluke, just one of those things. I was a complete mess and couldn’t stop crying.

Darcie has vocal cord paralysis and has a tracheotomy – a tube through her neck into her throat - to keep her airway open. Without it, Darcie panics which makes her breathing worse – a bit like when someone has an asthma attack.

Hunter was wheezing away, fighting for every breath. He ended up having a tracheotomy when he three and a half months old.  No-one knows what the future holds but it is possible they may both have tracheas for the rest of their lives.

I was terrified about how I was going to cope with two poorly children to look after. Thankfully the Julia’s House nurses and carers are calm in a crisis. I can panic when things go wrong, so having them around makes me feel more relaxed.

 

Taking a baby or toddler out is a struggle for any parent – prams, buggies, car seats and all that kit – nappies, feeds, and changes of clothes.  Travelling is such a challenge it can become overwhelming.

You wouldn’t believe what we have to cart around every single time we go out the door: 3 suction machines, each the size of a car battery – one for each child and a spare in case one breaks; two emergency rucksacks packed with medication, two metal 5-litre oxygen tanks, two SATS monitors to check their blood-oxygen levels and a milk pump, because Hunter is tube fed.

Then there’s the challenge of travelling with two children with tracheotomies. I had to carry out my first emergency trachea change on Hunter when he went blue on a car journey.

Julia’s House are so helpful and flexible. I can just text if I need some help and they will get back to me straight way with an answer. If they can do it, they will. Nine times out of 10 they come back with a yes.

When Julia’s House are coming the children get so excited; they literally jump up and down. The care team do baking, bubbles or play outside with them.  We have weekly care sessions at home and then once a month I take them to the hospice.

I choose to have Darcie and Hunter’s care sessions at the same time so that I can get a complete break. Julia’s House sends a nurse and two carers because of the risk of something going wrong with their tracheas.

Life is exhausting. I look after both children while Ben works part-time and when he’s at home we look after one child each. We are rarely alone and never get any time to think about each other as a couple.

There is a daily routine of cleaning round the trachea tube and changing the ties that hold it in place. It’s important to keep the tube clear too. If the tube gets blocked or needs changing it becomes an emergency situation.

And the care doesn’t stop at night. They go to bed at 7pm and I got to bed at 8, but that’s because I am up for an hour every four hours to put the children on a nebuliser, a mask that they wear for 20 minutes at a time to keep their airway clear of secretions.  I can never have a night off.

You will always get stares and attention when you are out with the children and a pushchair laden with oxygen and suction equipment, but we try and ignore it.

We were at a soft play centre and some parents pulled their children away and said:  ‘Don’t play with them’. I felt like shouting at them:  ‘you can’t catch a trachea!’

That’s the best thing about Julia’s House - the people there are totally non-judgmental. They are caring, reassuring and supportive. They make you feel great about yourself and proud of how you are coping. And that yes, actually, you’re good parents doing a really good job.

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When Julia’s House are coming the children get so excited; they literally jump up and down. The care team do baking, bubbles or play outside with them.  We have weekly care sessions at home and then once a month I take them to the hospice.

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