A MUM who lost two babies to the same rare illness wants to share her heartache as a way to encourage other grieving parents to talk more openly and honestly about child loss.
Claire Li, 47, from Bootle, suffered two tragedies caused by Edwards’ syndrome – a rare but life limiting condition – with baby Hope dying ‘in utero’ at 18 weeks, and Arlo living for 20 days.
Sadly, survival rates with this illness are low and whilst some children do live longer, many babies do not live beyond their first birthday.
Claire’s 12-week scan with Hope showed worrying signs, but the family were given very little information. They were told it could possibly be Edward’s Syndrome and Hope died six weeks after the scan.
Claire said: “We were told the chances of it ever happening again were very slim and that we wouldn’t have another child with it; any further pregnancy would be fine.
“So, after everything that happened with Hope, every week that Arlo stayed strong was like a little gift.”
Unfortunately, Arlo was also diagnosed as having Edwards’ Syndrome in utero – despite a healthy 12-week scan and Claire gave birth by C-section at 39 weeks.
Claire added: “We wanted heart scans and we wanted his lungs checked out. We decided that on the Friday and had a heart scan booked on the Tuesday, but he died on the Monday, at 20 days old.
“We didn’t want him in pain, and if they intubated him, he would have ended up in more pain. It was comforting to see that the nurses and doctors were just as upset as we were. Arlo touched them all and I knew they were doing their best for him.
“At his funeral, the celebrant said, ‘Arlo stands for Always Remember to Love Others, because all he knew in his short life was love’. That’s it, that’s all he knew.”
A new campaign and exhibition has been launched by photographer Ceridwen Hughes, which aims to offer more support to grieving parents.
The exhibition which has been created by Ceridwen Hughes and the organisation she founded, Same but Different, in conjunction with Soft UK which provides information and support to families affected by Trisomy 13 (Patau's Syndrome) and Trisomy 18 (Edwards' Syndrome) and is called ‘You’re not Alone’. It was launched during baby Loss Awareness Week (October 9-15).
Jointly funded by The National Lottery Community Fund, the largest funder of community activity in the UK, and Illumina, a global leader in DNA sequencing, it calls for more open discussion and aims to offer more support to parents whose children have passed away through life limiting genetic birth disorders known as Trisomy 13 or 18.
More than £30million goes to good causes from The National Lottery across the country every week, making projects like these possible. To find out more about how The National Lottery supports good causes throughout the UK, visit www.lotterygoodcauses.org.uk