A woman whose baby lived for two days after being born with Edwards’ syndrome is raising money for the charity that helped her family throughout this difficult period.
Jessica, a York-based arboriculturist who became pregnant after she and husband Simon had previously gone through seven miscarriages, were both delighted and nervous at the news.
“… he was still alive, I couldn’t do it”
Their baby was diagnosed with Edwards’ syndrome at their first scan. Edwards’ syndrome, also known as Trisomy 18, is a genetic condition that means the child is unlikely to survive for very long outside of the womb — although in some cases, people with Edwards’ syndrome have been known to survive to adulthood.
Jessica was offered abortions but said, “as he was still alive, I couldn’t do it”.
Jessica was able to connect with online support groups and managed to find lots of other positive stories of children being born alive.
She explained, “This gave me hope and the confidence to give him a chance to be born. I’m so glad I went ahead. At least we had Oaken and a positive experience”.
To raise awareness of baby loss and Edwards’ syndrome, and to fundraise for the charity that has got them through this experience, Jessica has had her 11-year-old dreadlocks chopped off.
The money raised will go toward the family’s local children’s hospice Martin House, who supported them throughout baby Oaken’s life and are now providing them with counselling.
The hospice cares for children with life-limiting illnesses. They allowed the family to prepare themselves for the expected short time they’d be able to share with baby Oaken.
Jessica said, “We’ve had some real downs, as expected. I was terrified throughout the pregnancy that we would lose him, but I make a conscious effort to focus on the positives”.
Jessica has praised the hospice’s “incredible support”, and their provision of a specialist room that allowed the family to stay together during the days they spent with Oaken.
It was set up like a lounge, with an adjacent “cold room” with a Moses basket and cooling pad, which meant they could remain there after Oaken had passed away.
The hospice allowed visits from friends and family members and also helped with advice on funeral and other arrangements.
“He’s part of our family, just not with us”
Jessica and Simon’s older daughter Willow was five years old at the time of her brother Oaken’s birth and proved to be a “pillar of strength” when he was born.
Jessica explained: “She taught so many people about death and not to be frightened of it. It was a privilege to have that perception from a young person”.
She also described how Willow, who was desperate to be a big sister, still gets upset over her brother’s passing but is glad that she had the chance to meet him, love him and dress him.
She added, “These are things a girl wants to do with a baby brother, so it was a positive thing for her as well”. She also explained that a charity that sends out a ‘siblings box’ helped Willow to make and keep memories of her baby brother.
She went on, “We also talk about him quite a lot in a positive way. We talk about our happy memories. There are photos of him all over the place. He’s part of our family, just not with us”.
Jessica’s husband Simon has also expressed the difficulties they have experienced. especially because, as Jessica has noted, the focus is so often on the mother. She explained, “I know I have the physical stuff, but he’s lost eight babies as well. It’s been hard for him, but he’s been a huge support to me, my biggest fan”.
Ahead of cutting the dreadlocks, she told the BBC that her neck is tired and she won’t miss stepping on them, and she’s also looking forward to not being recognised for a change.
Amazing!! I’ve just upped the target to £5k after we exceeded the £3k target!! I’m over the moon and so very appreciative of everyone who has donated or shared my posts or both. Martin House are anticipating a fundraising shortfall of £2.2 million so anything we can do will make such a difference. Thank you all for your support. Just for fun, here’s a video of when I turned my hair into a pollarded tree for an awards event I went to for a garden we (Askham Bryan College Askham Bryan College) created for Harrogate Flower Show Harrogate Flower Show/Centre of York/a care home. https://www.justgiving.com/fundraising/jessica-herbertdreadlockheadshave
Posted by Jessica Herbert on Saturday, 26 June 2021
The family also described “feel[ing] lucky Oaken was born alive, despite weighing only 3.5 pounds”.
Jessica says “he had character and gave them two days to show him how much they wanted and loved him”.
“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. He was calm and contented and responded to our cuddles and touch”.
“He was such a brave little man who showed us we’d done the right thing to give him a chance at life,” says Jessica, who feels lucky that a small number of family and friends were able to meet him and be part of his life”.
“He has taught so many people so much about life, love and death and I’ll be forever grateful to him for this”.
A spokesperson for Right To Life UK, Catherine Robinson, said: “It is heartbreaking that baby Oaken’s life was cut short so soon, but wonderful that his parents were able to share time with him. We wish Jessica and Simon the best in their lives after such a heartbreaking loss.”
Photo credit: Jessica Herbert
