A woman whose son lived for just two days is raising funds for the hospice who helped them through their tragedy – by chopping off her enormous dreadlocks.
Jessica Herbert’s son Oaken was diagnosed with a deadly genetic condition after doctors discovered something was wrong at her 12-week scan.
Oaken had Edwards syndrome, a genetic disorder caused by the presence of a third copy of all or part of chromosome 18.
Sadly, only one in 10 babies born with the condition live past their fifth birthday. Tragically, Oaken died two days after he was born in August.
But Jessica, 46, from York, said she was grateful to have been able to hold him and even christen him before his passing.
Following the pregnancy, Jessica and husband of 10 years Simon, 48, were supported by Martin House Children’s Hospice who she said made a ‘positive difference’ in their lives.
‘We only had Oaken for two precious days, that’s all we had,’ says Jessica. ‘He was a brave little man who had so much character but his medical difficulties were too severe and there was little the wonderful medical teams involved could do to help him so we went to Martin House.
‘It was a tragic situation, but the support we got from the hospice was truly outstanding.
‘I really wanted to do something for them.’
Jessica vowed to help raise vital funds for the hospice, so she decided to go for the big chop. She is planning to snip off the dreadlocks that she hasn’t cut in more than 11 years, all to try to help families like hers.
The cut is set to take place on 31st July at the Deer Shed Festival Base Camp Plus event at Baldersby Park in Thirsk, North Yorks.
‘It’s going to be a massive weight off my shoulder, I’m excited and nervous. The hair has become a big part of my identity and the last time I cut it was in 2010,’ says Jessica.
‘My neck is really looking forward to the change, but I’m a bit scared.’
Oaken was born by caesarean section weighing just 3.5lbs and against all odds he was breathing.
Jessica said that due to the syndrome, she ballooned to more than 48 inches in circumference and was full-term size after just six months.
‘We received the diagnosis very early on, so it was extremely stressful. I had to have many scans and tests.,’ she says.
‘I became absolutely enormous. I had over five litres of excess fluid and that’s because Oaken was receiving food through the umbilical cord and peeing it out, but he wasn’t then taking it back in. It was scary and uncomfortable.’
Jessica, who works as a tree surgeon, said that holding him for the first time was ‘just incredible’.
‘It felt like a tsunami when they opened me up to scoop him up,’ she says. ‘I didn’t even know if he was alive, but they told me he was.
‘They made sure he was breathing, and I was allowed to hold him. Having spent the entire pregnancy expecting to lose him, then having him in my arm, alive, looking content. It was amazing.
‘I can’t express the feeling love, relief, happiness. All of those good and positive feelings.’
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