Our amazing fighter….Joel Baines
Nathan and Claire Baines’ five-month-old son Joel was born at University Hospital with a laryngeal cleft – a gap between his food and wind pipes which
means he runs the risk of food and liquid getting into his lungs. When he was just two weeks old he had an operation at Birmingham Children’s
Hospital to repair half of his cleft and a tracheostomy was fitted to give him a safe airway.
Nathan and Claire say Joel will have to be fed nil by mouth until his cleft is fully repaired. Only then will Joel be able to be taught for the first time how to swallow. After five months in hospital the couple were able to bring home their son. Now he needs care around the clock – making sure his tracheostomy is working, that he doesn’t choke and he’s breathing ok.
While Claire was pregnant she had no idea anything was wrong. She said: “Finding out as a mum you kind of go ‘what did I do wrong? If he didn’t have a trachy you wouldn’t know there was anything wrong. He’s a happy little baby and he’s coping really well.” When Joel was born he didn’t cry but it wasn’t until an attempt was made to cup feed him it was known there was something wrong. Joel doesn’t make any sounds because the tracheostomy means air in and out of his lungs bypasses his vocal chords. A feeding tube is attached to him all the time and he will be nil by mouth until the rest of the cleft is repaired when he has grown big enough.
Father of Joel, Nathan said: “He’s the most resilient human being I’ve ever met, he’s awesome. We’re really fortunate this is the only thing wrong with him. I genuinely think we’re blessed to have Joel the way he is, what we see him go through, he honestly is perfect. When Joel was about three months old University Hospital referred him to the charity Zoe’s Place Baby Hospice.
Claire said before being introduced to the hospice the couple’s lives had been turned upside down with Joel’s condition, which is so rare it only affects one in 20,000 people. Joel was ten days old when he was diagnosed. She said: “It has been a difficult journey, a really traumatic time. We can’t enjoy all the normal activities young, healthy babies do as we have to consider the risks – he could pick up a chest infection really easily and in addition to all the normal baby essentials we have to carry extras – such as oxygen tanks or suction machines. And of course we couldn’t just leave him as other family or parents aren’t trained to treat Joel.”
She said the support from Zoë’s Place had been invaluable – with trained professionals who know how to deal with conditions such as Joel’s allowing herself and Nathan peace of mind during their periods of respite. She said: “We are lucky that Joel’s condition is fully treatable so there is light at the end of the tunnel, but in the meantime Zoë’s Place has been a gift from God as without the respite care the hospice provides we know we wouldn’t be able to cope.
“I remember a few years ago watching Children In Need and seeing the video of Gary Barlow’s visit to the hospice. I didn’t really think anything more about it though as – probably like everyone else – you think it is something that will never happen to you. But it has. Here we are at Zoë’s Place, needing their support and expertise. We have become one of those families, just like those we watched in the video that night.”
Nathan and Claire Baines - parents of Joel
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