Following an EastEnders plotline in which a couple had an abortion following the prenatal diagnosis that their baby had Edwards’ syndrome, a number of mums who have faced the same scenario in real life have shared their experiences.
Edwards’ syndrome, also called trisomy 18 because the condition is characterised by the presence of an additional chromosome on the 18th chromosome pair, is a rare genetic condition that can be detected before a baby is born.
One mum, Jennifer Holyrod, who has a child with Edwards’ syndrome, told BBC Newsbeat that she was 32 weeks pregnant when she found out her daughter Amber was “not growing the way she should have been”.
The BBC reports that a diagnosis would not have been possible at this late stage, so Jennifer and her partner decided to wait. “I think not knowing at that time, it was just praying to get to the end of your pregnancy and that everything is going to be OK”, she said.
Amber was born with breathing difficulties and weighed only 4 lbs. Specialist care helped her with her breathing difficulties and two weeks later she was diagnosed with Edwards’ syndrome.
Jennifer said it was “as though Amber was written off” because she was not expected to survive long after birth.
Amber had numerous medical interventions over the next six months, which her mum described as a “trauma, for her and for us as a family”.
“What she went through in those few months isn’t something that any child should have to go through…”
Contrary to expectations though, Amber did not give up and “kept being able to fight those fights”. Amber even started school in September. There are difficulties, Jennifer said, because Amber is unable to walk or talk.
“She laughs and plays… she does communicate in her own way. She’s smiling all the time and her interaction with people is something else”.
Jennifer wanted to share her story to show “there are positive outcomes”.
“When we were at the start, all we wanted was to look for those positive stories.”
“It’s hard to get through every day without that little bit of hope. So it hopefully gives somebody else that little bit of hope.”
Right To Life UK spokesperson Catherine Robinson said “Positive stories of children with Edwards’ syndrome are not featured in the media enough and it is certainly encouraging to see one featured on the BBC.”
