'Short life was love' Mum heartbroken after losing two babies to same rare condition

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'Short life was love' Mum heartbroken after losing two babies to same rare condition

Claire Li's babies suffered with Edwards’ syndrome – a rare but life limiting condition affecting babies. She has suffered heartbreak twice followi

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Claire Li’s babies suffered with Edwards’ syndrome – a rare but life limiting condition affecting babies. She has suffered heartbreak twice following the death of baby Hope 18 weeks into the pregnancy – and the loss of her second child Arlo, who was alive for just 20 days. 

At her 12-week scan with Hope, the baby showed worrying signs – and doctors told Claire it could possibly be Edward’s Syndrome.

Just six weeks after the scan, Hope died.

Claire, from Bootle, Merseyside, spoke to the Liverpool Echo about her loss. She claims doctors told her the chances of it happening a second time were very slim.

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.”

Baby Arlo, the second child for the couple, was also diagnosed with the condition in utero, despite a healthy 12-week scan.

Claire gave birth to Arlo by C-section at 39 weeks, but he later died just shy of three weeks after he was born.

Claire added: “We didn’t want him in pain, and if they intubated him, he would have ended up in more pain.

READ MORE: ‘Symptoms were things you would see in a normal baby’ – key advice

Edwards’ syndrome is typically caused by spontaneous genetic mutations that occur at the time of fertilisation.

Most babies with the rare life condition will die before or shortly after being born.

According to the NHS, only a small number – about 13 in 100 – babies born alive with Edwards’ syndrome will live past their first birthday.

Same But Different, an organisation which “puts people’s lived experience at the heart of the story”, has compiled an exhibition which provides information and support to families affected by Edwards’ syndrome.

They also provide information and support to families affected by Patau’s syndrome, a rare genetic disorder caused by an additional copy of chromosome 13 in some or all of the body’s cells.

The exhibition was launched today, during Baby Loss Awareness Week, which runs from October 9 to 15.

Ceridwen Hughes, founder of the charity and photographer, said: “Baby loss sometimes feels like a whispered secret.

“No-one knows what to say to a grieving parent and often people are too afraid to even say the child’s name for fear of causing more upset and yet the parents I have spoken to yearn to remember and celebrate the lives of their child, no matter how short their life.”



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