One bereaved mum's mission to support others through grief

Bronwyn Evans, 34, lost her daughter Roxy suddenly on October 20, 2007, leaving the mother-of-three and partner Wayne Palmer devastated.

The youngster, who was born 11 weeks early on May 4, 2003, had spastic quadraplegic cerebral palsy as well as severe learning and developmental delay, which also affects her twin sister Chelsea.

Bronwyn, who lives in Church Street, Hemel Hempstead, said: “It was absolutely devastating. I would not wish this burden on anyone. It’s so sad.

“Roxy had a fever so I gave her some Calpol and put her down for a nap while I made her dinner.

“When I went to wake her, she had died.”

In the painful weeks and months that followed, Bronwyn and Wayne struggled to cope with their grief and they found there was scant support for bereaved families in Hertfordshire – only groups for those who had lost babies through Sudden Infant Death Syndrome.

Bronwyn, who is also mum to teenage son Storm, 16, said: “I internalised my grief. I could not talk about it.

“In the early days, I did not want anyone to talk to me. It was a minefield for others, because they did not know what to say.

“I actually had someone cross over the street so they didn’t have to talk to me.

“Talking about children dying is taboo – it’s unnacceptable. No one wants to think about it happening to their family.

“By talking to me, it made it real and scary for them.”

In the weeks following her death Roxy’s body had to undergo an autopsy which added to the couple’s pain, meaning they had to wait more than a month before they could lay their daughter to rest.

The inquest and post-mortem found that the youngster had a lot of debris in her lungs, caused by her lack of the normal swallowing reflex when eating.

As a result, Roxy regularly suffered from severe chest infections and high temperatures. On this occasion, the fever had become too much for her little body and it had shut down.

This discovery led to health bosses allowing Chelsea to be fitted with a feeding tube to stop her choking every time she was fed by her parents.

Bronwyn, who works as a systems analyst, said: “We were desperate for people to help us, we were telling them ‘these girls are choking, but they wouldn’t listen.

“Because her sister died, Chelsea lives.”

In the years following the girls’ early entry to the world, the family lived in the knowledge that the twins had a limited life expectancy.

“We always knew that we would be burying our daughters one day, because of their complex health issues, but we could still not imagine the magnitude of the loss.

“Nothing can prepare you for that.”

The tragedy put a heavy strain on Bronwyn and Wayne’s relationship and the couple realised they were better off apart.

The pair remain good friends and are devoted to caring for Roxy’s twin sister Chelsea, now 13.

Wayne, 34, cares for Chelsea at home in a specially-converted bungalow in Hatfield and the teenager goes to school at Watling View in St Albans.

Bronwyn, who moved to Hemel in 2008, said: “He has done an amazing job with her, and he is a fantastic dad.

“We work together and our kids come first. We will always be friends.”

Due to the lack of outside support in the months and years that followed Roxy’s death, Bronwyn found talking about her daughter extremely painful to the point she would not look at photos.

She said: “I kept the photos privately in a drawer, but if I was rummaging for something and came across one of Roxy it would bring it all back and I would get very upset.”

Recalling her daughter’s personality, Bronwyn remembers how fiesty she was.

“She was stubborn, she was switched on. When she wanted something, she wanted it now!

“With the girls’ conditions, their muscles can get very tense and go into spasm.

“Sometimes when you had Roxy on your lap, she would get this look in her eye and you would know what was coming.

“She had a very strong left and right hook, and she thought it was the funniest thing in the world – her laugh was infectious.

“She was our strongest girl, so it was even more of a shock to lose her.”

Talking about the death of a child can be difficult to raise in a conversation, as Bronwyn has found.

In the nearly nine years since Roxy’s death, she says she had never spoken to another bereaved parent so she always wondered if the strength of her emotions were ‘normal’.

It wasn’t until she suffered a back injury earlier this year and took part in a ‘fit for work’ programme, she began chatting to a woman about the loss of Roxy.

“She told me about The Compassionate Friends, who support people who have lost a child at any age and in any circumstance, so I gave them a call,” said Bronwyn.

“But they told me they had no branch in Hertfordshire, so I found myself saying ‘Well, if I set one up would you help me?’”.

n Next week: find out about Bronwyn’s new Compassionate Friends support group for bereaved families, based in Hemel but serving the whole county.