‘Love had a short life.’ After losing two babies to the same rare disease, the mother is sad.


A MUM has opened up about her grief after losing two babies to a rare condition.

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.

“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.”

She explained that the baby’s name originated from the love he had known in his short lifespan.

She said: “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.”


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. “Brinkwire Summary News”.


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