Earlier this month we marked Baby Loss Awareness Week, an annual campaign during which families who have lost babies come together to share their stories and keep their loved ones memories alive. Last year we published this moving interview with a mother who is keeping her daughter's memory alive. We're running it again now so you can read her moving words.
A NEWPORT mum is keeping her daughter’s memory alive by dedicating her time to her charity named Ffion’s Gift.
Ffion’s Gift raises awareness about Edwards Syndrome (Trisomy 18), a rare but serious chromosome deficiency.
Sarah Davies-Hope and husband David Hope were told 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 baby loss awareness, she tells the Argus of her emotional journey.
Sarah and her husband David Hope lost their baby daughter to Edwards Syndrome in 2015. Picture: Sarah Davies-Hope
She said: “In our situation we knew the gender and already started buying things. We told her big sister and then the rug was pulled from underneath us.
“Our daughter was diagnosed with a life limiting condition while in the womb, and we were on the understanding that I was carrying a child that we were not bringing home.
“She was born sleeping on April 1 and at the time our wider friends and family, nobody had ever heard of the condition she had which was Edwards Syndrome.”
Edwards Syndrome affects how a baby may survive, most babies born with the condition will die before or shortly after birth.
About 13 in 100 babies born alive with Edwards Syndrome will not live past their first birthday.
Ffion's Gift Charity baby loss memorial light up in memory of babies who gained their angel wings. Picture: Sarah Davies-Hope
A baby with the condition has three copies of chromosome number 18 instead of two, which effects how the baby will grow and develop.
Ms Davies-Hope’s baby daughter, who she named Ffion, had Full Edwards syndrome and died shortly after being born.
She added: “At the time I was engulfed in the fact that something was wrong with my baby, I couldn’t think of anything else.
“For me you terminate something that you don’t want like a phone contact, for me to medically terminate my baby it was heart-breaking as I went through the full delivery, which was really hard.
“It's hard enough when you are delivering, you know at end your going to get handed a beautiful baby that you feel all this rush of love for.
Sarah's daughters Carys (left) and Bella (right) outside the tree display in memory of their sister and other babies who died. Picture: Sarah Davies-Hope
“To go through that situation for nothing - you don’t hear the first cry, you don’t get all of those first things as you would get with a normal delivery. It's emotionally and physically more draining.”
Ffion is survived by her older sister Carys Davies-Hope, 11 and younger sister Bella, aged five, who Ms Davies-Hope describes as her rainbow baby, born in 2017.
Now seven years since her daughter’s death, the charity founded by Ffion’s mum is raising awareness of Edwards Syndrome and supporting other mums who have gone through baby loss.
Baby Loss Awareness Week (October 9-15) remembers all babies who died through miscarriages or life-threatening illnesses.
She added: “Our main priority for creating our charity is to raise awareness of the condition. We thought if we didn’t know about it then hundreds of other families wouldn’t know about it.
Candles will be lit this week in memory of little ones who were too precious for the world. Picture: Sarah Davies-Hope
“Until you lose a child you are very naive and unaware of baby loss, why would you think about it if you haven’t lived it.
“We started supporting baby loss after we lost Ffion, I take my hat off to women who go through multiple loses to get her child.
“Despite losing one, I can't imagine going through it multiple times and the strength from women who keep going is heart-breaking.
“Even if you try for a baby, the want is there every time a cycle comes round, and seeing a negative test is heart-breaking.
“But to get to a point where you are pregnant and lose a baby is devastating, and even though it physically happens to mothers, dads go through the loss too.
A love heart created by Ffion's sisters in her memory for the tree display at Michael J Ryan, sons and daughters funeral directors. Picture: Sarah Davies-Hope
“It’s important that they are not forgotten about, as we have really to remember that dads matter too."
To mark the occasion of Baby Loss Awareness Week, every year Ffion’s Gift charity create 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 babies who passed away.
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