Darcie is the picture of health. Smiley, bright-eyed, cheeky and incredibly active, at first glance she is like any other mischievous toddler.
Look again and you realise something isn’t quite right. For round her neck are cotton strips, like a mini bandage, holding a tube into her throat – a tracheotomy in place.
It’s not an uncommon sight in children that are referred to Julia’s House. Many youngsters who develop breathing problems as part of their condition can end up with a tracheotomy – usually temporarily – to keep their airway open.
For 18 month old Darcie, however the trachea conceals a very usual condition indeed, for she was born with a ‘missing link’ between her brain and her vocal chords, a disconnected nerve. Vocal chords are a bit like bellows, expending and contracting – Darcie’s are paralysed in a half open position, pushing into and narrowing her airway.
Without the trachea Darcie starts to panic as she fights for breath – “a bit like what happens to someone during an asthma attack”, said mum, Lydia. “And the panicking just makes things worse until she is fighting for every breath.”
Her difficulty breathing was apparent from the moment she was born. She kept turning blue and needed oxygen. There was another, more unusual symptom.
“With every breathe she made a high pitch squeaking noise, like a guinea-pig. It was the sound of the air squeezing out of the tight airway.” Doctor’s made a decision to ‘blue light’ her by ambulance from Poole to Southampton hospital for further tests.
Said Lydia: “It was rush hour, and we had to make our own way there as the ambulance was full with a doctor and nurse – plus, they said they did not want us to travel with them in case something happened. It was terrifying.
We had never been to Southampton hospital before so I didn’t know where to go – then I heard Darcie squeaking – we just followed the guinea-pig noises to find her.”
Four weeks of tests followed. Scans, neurological tests – “they thought it might be brain damage” – it was a scary time. “Cameras down her throat, wires all over her body, 15 litres of oxygen minute being pumped into her to keep her airway open. I tried so hard to be strong for her sake, but it was awful. Just seeing a doctor would set me off crying.
Said Darcie’s dad: “We are a young couple, this was our first child. We had watched One Born Every Minute on TV went to ante natal classes and then suddenly this. Everyone else in our group had had their babies and they were all fine, We didn’t know what to say when people asked. You just aren’t prepared for this, you know it happens, you know people can have sick children, but you’re not expecting it to happen to you.”
Once doctors realised it was Darcie’s vocal chords that were causing the problem she was given a tracheotomy at six weeks old and things improved. She still spent more than five months in hospital though while Lydia and Ben became proficient in all the medical procedures which were to become part of their daily round of care for Darcie.
“Ben had lots of time off work, but eventually he had to go back. I would stay in hospital all day from 7am to 10pm then come home to sleep. I hardly ever saw Ben. We had no life together.”
Eventually Ben had to go part-time – with the loss of status and income – to enable the family to cope.
Not surprisingly, with all the pressure and worry cracks began to appear in their relationship: “We were so grouchy with each other. It took a massive toll on our relationship. We lived in the same house, but all we ever thought about, talked about was Darcie. You really need that time together as a couple – even just for a few hours – and we just weren’t having that.”
Then Ben and Lydia were told about Julia’s House. The couple, who live in Bransgore, would visit the nearby Julia’s House shop. “But back then Julia’s House didn’t mean anything to me beyond being a charity we liked to donate stuff too now and again,” said Lydia.
“Our family help out, but they are hyper-protective,” said Ben. Lydia agrees: “It’s great that they support us, but I wouldn’t call it respite – I get disturbed all the time by calls from grandparents asking if Darcie is Ok to do this or that! The brilliant thing about Julia’s House carers is they just get on with it and they are so flexible.
“I can just text on the off-chance 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. Ben and I have had a couple of evenings out – going to concerts – while Julia’s House looks after Darcie. It was amazing to get a night out together doing something just for us.
“It is also brilliant to have an extra pair of professional hands to help with jobs we find difficult. Darcie hates having the ties on her trachea changed – we have quite a battle sometimes which is upsetting and exhausting.
“If I struggle and the trachea falls out it turns into an emergency situation. Her nurses are happy to do that for us. Nothing is too much for them.
“For the first Julia’s House sit I stayed in the house. To be honest, I wasn’t sure what to expect. I soon realised Darcie was in good hands. Now I go out and meet a friend for coffee, do some shopping – or sometimes, if I have had a bad night with Darcie – I just go upstairs for a sleep. When I do, the carers will take Darcie out to the park or somewhere exciting to give me some peace.
“It’s good for Darcie to get out as she doesn’t have many opportunities to mix with other children. Although we many have home support from Julia’s House once a month I take her to the hospice for a session instead.
“The first time I visited I was terrified, worried about what to expect. The minute Darcie gets to the hospice she just legs it without giving me a second thought – she loves it! That interaction with other children is so important to her. Poorly children can get isolated.”
Darcie and her mum and dad have also enjoyed some of the ‘extras’ – Housemates social mornings for families to meet up – and the complementary therapy.
For Ben, massages have been about helping him with his bad back. For Lydia, who is expecting her second child in November, it has been some extra special ‘me time’.
As Darcie approaches her 2nd birthday, doctors had hoped that she might be able to cope without the trachea. But so far the attempts have ended in failure.
“She did go for 45 minutes the last time, but then she started panicking and couldn’t breathe. I don’t want her to keep going through that.”
So for now, the trachea stays. Worst case scenario, Darcie will need the trachea for the rest of her life. One option the couple is looking at is surgery in France with the one surgeon in the world who might be able to reconnect the nerve ending to the vocal chords.
In the meantime they are trying to give Darcie as a normal a childhood as possible.
“You will always get stares and attention when you are out with Darcie in a pushchair laden with oxygen and suction equipment, but we try and ignore it.
“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.”