When Emma Barton found out she was pregnant with her first child, the new mum dreamed of meeting her daughter for the very first time.
But when Esme was born, doctors whisked away her away and Emma’s precious first skin-to-skin moment was ‘ruined’.
It wasn’t until her newborn was handed back to her with a feeding tube, that Emma realised there was a problem.
She had been told Esme wasn’t hitting the key markers during her pregnancy, but Emma never ever expected what was to come.
“It wasn’t really explained to me. They could clearly see there were facial differences and she was born with hypothermia and hypoglycaemia. She was taken away straightaway. It was all downplayed, but it was critical and there was me thinking our amazing skin-to-skin first moment was being spoilt.”
The rollercoaster continued when doctors told Emma that Esme may have a chromosome condition and after an anxious six-week wait the diagnosis was confirmed as partial Trisomy 14. The tests also revealed that Esme has Cri-du-chat syndrome as well as metabolic issues.
“The first year was especially tough as she was ill a lot. She had a lot of infections. Esme is my first child, so I had nothing to compare it to. Esme is profoundly disabled, and it affects all aspects of her life. She is dependent on care givers for absolutely everything.”
Emma hadn’t been aware of Acorns before Esme’s referral. It took some time before she was ready to explore what Acorns could offer families like hers.
“Acorns was initially mentioned to us when Esme was a baby. But at that time it just felt really fatalistic. Partly because it was accepting that her life would be over before it’d really started. I certainly wasn’t ready for that.”
The Erdington mum finally considered Acorns for support with Esme’s complex metabolic issues. And although she still had reservations and thought Esme wouldn’t meet the criteria, she quickly realised that we help lots of children with complex needs.
“As soon as I walked into the hospice it was obvious that Acorns is about so much more than end of life care. It’s about living, where all your preformed ideas are totally blown away. I didn’t take any convincing. I just had to get to that stage of needing some support.
“I’m grateful Esme has Acorns and I’m really impressed with the way Acorns has let her grow. Acorns is a place where Esme can come and have happy times and we can have valuable respite. It’s vital for that. Acorns is a real lifeline for the families it supports.”
Emma beautifully sums up exactly what Acorns means to children and families who use our services and why we need support from the local community to continue providing our vital care.
Next week sees the return of Acorns Santa Run. Coming to three locations across the West Midlands for the very first time, it’s our biggest series of Santa Runs yet.
The events are taking place in Birmingham, Walsall and Evesham on 7 and 8 December.
Tickets for Acorns Santa Run are priced £15 for adults, £10 for children and £5 for dogs. Under 2s are free.
To sign up for Acorns Santa Run, please visit, www.acorns.org.uk/santa-fun-run
Photo captions: By signing up for Acorns Santa Run, you are helping children and families. Pictured are Emma Barton and her daughter Esme.
For more information or for interview, photograph or filming opportunities, contact the PR and Communications team:
Notes to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.
• It costs £27,000 every day to run Acorns services providing care for children and support for their families. The charity relies heavily on donations to fund the majority of its activities.
• To find out more about Acorns, please visit www.acorns.org.uk