Newport Ffion’s Gift Charity Raises Awareness of Edwards Syndrome

A NEWPORT mum is keeping her daughter’s memory alive by dedicating her time to her charity named Ffion’s Gift.

Sarah Davies-Hope and her husband David Hope learned when Sarah was pregnant with their second daughter that the baby had Edwards Syndrome.

Ms Davies-Hope, from Malpas, gave birth to a stillborn baby girl at 21 weeks pregnant at the Royal Gwent Hospital on April 1, 2015. In light of the baby loss awareness, she recounts the Argus of his emotional journey.

Sarah Davies-Hope remembers her daughter seven years later with a tree exhibitSarah Davies-Hope

Sarah and her husband David Hope lost their baby girl to Edwards Syndrome in 2015. Photo: Sarah Davies-Hope

She said: “In our situation, we knew the sex and had already started buying things. We told her big sister and then the rug was pulled out from under us.

“Our daughter was diagnosed with a life-limiting condition while she was in the womb, and we were convinced that I was carrying a child that we weren’t bringing home.

“She was born sleeping on April 1 and at the time, our wider friends and family, no one had ever heard of the condition she had, which was Edwards Syndrome.”

Edwards syndrome affects how well a baby can survive, most babies born with the condition will die before or shortly after birth.

About 13 out of 100 babies born alive with Edwards syndrome will not live past their first birthday.

Sarah Davies-Hope remembers her daughter seven years later with a tree exhibitSarah Davies-Hope

Ffion’s Gift Charity Baby Loss Memorial lights up in memory of babies who have won their angel wings. Photo: Sarah Davies-Hope

A baby with the condition has three copies of chromosome number 18 instead of two, which affects how the baby will grow and develop.

Ms Davies-Hope’s baby girl, whom she named Ffion, had Full Edwards Syndrome and died shortly after birth.

She added: “At the time when I was overwhelmed with the fact that something was wrong with my baby, I couldn’t think of anything else.

“For me, you’re ending something you don’t want, like phone contact, for me medically terminating my baby, that was heartbreaking because I went through the full birth, which was really difficult.

“It’s hard enough when you give birth, you know that in the end you’re going to have a beautiful baby that you feel all this love for.

Sarah Davies-Hope remembers her daughter seven years later with a tree exhibitSarah Davies-Hope

Sarah’s daughters Carys (left) and Bella (right) outside the tree are displayed in memory of their sister and other deceased babies. Photo: Sarah Davies-Hope

“To go through this for nothing – you don’t hear the first cry, you don’t get all those first things like you would with normal childbirth. It’s emotionally and physically more draining.

Ffion is survived by older sister Carys Davies-Hope, 11, and younger sister Bella, five, who Ms Davies-Hope describes as her rainbow baby, born in 2017.

Seven years after her daughter’s death, the charity founded by Ffion’s mother is raising awareness of Edwards Syndrome and supporting other mothers who have lost their babies.

Baby Loss Awareness Week (October 9-15) remembers all babies who have died from miscarriages or life-threatening illnesses.

She added: “Our main priority in establishing our charity is to raise awareness of the condition. We thought that if we didn’t know, hundreds of other families wouldn’t.

Sarah Davies-Hope remembers her daughter seven years later with a tree exhibitSarah Davies-Hope

Candles will be lit this week in memory of the little ones who were too precious to the world. Photo: Sarah Davies-Hope

“Until you lose a child you are very naive and unaware of the loss of a baby, why would you think about it if you haven’t experienced it.

“We started supporting baby loss after losing Ffion, I take my hat off to women who go through multiple losses to have their child.

“Even though I lost one, I can’t imagine going through it many times and the strength of the women who carry on is heartbreaking.

“Even if you are trying to have a baby, the need is there every time a cycle comes, and seeing a negative test is heartbreaking.

“But getting to a point where you are pregnant and losing a baby is devastating, and while it happens physically to mothers, dads also experience the loss.

Sarah Davies-Hope remembers her daughter seven years later with a tree exhibitSarah Davies-Hope

A love heart created by Ffion’s sisters in his memory for the tree display at Michael J Ryan, son and daughter funeral directors. Photo: Sarah Davies-Hope

“It’s important that they are not forgotten because we really need to remember that dads matter too.”

To mark the occasion of Baby Loss Awareness Week, each year the charity Ffion’s Gift creates window displays at Michael Ryan and Sons’ Funeral Directors on Malpas Road.

The display shows a tree of baby names written on hearts in memory of thousands of deceased babies.

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