Related Topics

  • Coronavirus pandemic

image copyrightJessica Herbertimage captionBaby Oaken was born in August 2020

Pregnancy during a pandemic is challenging enough for families, but Jessica Herbert had the added stress of knowing her baby was unlikely to survive.

When Jessica, an arboriculturist in York, fell pregnant she and husband Simon were both delighted and nervous, having previously been through seven miscarriages.

At the first scan, their baby was diagnosed with Edwards' syndrome, a condition that few children survive. They were offered terminations but, "as he was still alive, I couldn't do it," says Jessica.

On their journey of love and loss, Jessica will now have her head shaved – no mean feat for someone with dreadlocks down to her knees – to raise money for the charity which has helped them through this difficult time.

Focus on positives

Thanks to the support from their local children's hospice Martin House, which cares for children with life-limiting illnesses, the family were able to prepare themselves for what little time they'd have with baby Oaken, who lived for two days.

"We've had some real downs, as expected," says Jessica. "I was terrified throughout the pregnancy that we would lose him, but I make a conscious effort to focus on the positives."

Their daughter Willow was five years old at the time and proved to be a pillar of strength when her brother was born.

"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."

Desperate to be a big sister, Willow still gets sad but at least she met him, loved him and dressed him.

"These are things a girl wants to do with a baby brother, so it was a positive thing for her as well," says Jessica.

"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."

There's a charity that sends out a siblings box which helped Willow to make memories of Oaken.

image copyrightJessica Herbertimage captionJessica's daughter Willow talks about her baby brother often and gives them a young person's perspective on death

After a lot of research she connected with some support groups online and on Facebook and found lots of much more positive stories of children being born alive.

"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."

Incredible support

Jessica has praised the hospice for its "incredible support" and the specialist room provided for her family to stay together while Oaken was alive.

It was set up like a living room, with an adjacent "cold room" containing a Moses basket and cooling pad, which meant they could remain there after Oaken had passed away.

The hospice allowed friends and family members to visit and gave advice on starting funeral and other arrangements.

Husband Simon has been resilient but also found it hard – especially because, as Jessica says, the focus is so often on the mother. "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."

The couple are both undergoing counselling through Martin House.

To raise awareness of baby loss and Edwards' syndrome, and to fundraise for the charity that has got them through this experience, Jessica will be having her 11-year-old dreadlocks chopped off.

Jessica’s son Oaken was born last year. We supported Jessica and her family prenatally and after her baby died.

To fundraise for us, Jessica is pushing herself to the limit by shaving off her 4ft 2ins dreadlocks — which she’s had for 11 years! #ChildrensHospiceWeek

— Martin House Children's Hospice (@MartinHouseCH) June 24, 2021
The BBC is not responsible for the content of external sites.View original tweet on Twitter

"They've been part of me for so long – I'm excited and nervous – but I'm hoping it will be quite liberating for me."

Her neck is tired and she won't miss stepping on them, she says, 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…

Posted by Jessica Herbert on Saturday, June 26, 2021The BBC is not responsible for the content of external sites.View original post on Facebookimage copyrightJessica Herbertimage captionHer knee-length dreadlocks will be cut on July 31 at the Deer Shed Base Camp Plus event

The family feel 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."

If you, or someone you know, have been affected by the issues covered in the story, the BBC Action Line has details of organisations offering help and support.