Hope’s legacy could be the gift of life

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Grieving Newmarket parents of the UK’s youngest organ donor at less than two hours old have spoken of their heart-wrenching decision.

Tiny Hope Lee died soon after being born alongside her healthy twin brother Josh last week.

The baby girl’s parents Emma Lee, 32, and husband Drew, 51, knew she would not survive because she suffered from a rare brain disorder.

But they made the decision to go ahead with the pregnancy in the hope that their little girl would help save someone else.

Emma, who works as a carer, said: “It’s quite a heartbreaking decision to make.

“If it was in different circumstances and she had just passed away after birth I think the decision would not have been that easy.

“But as we had known for so long we just felt it was right.

“We were so pleased it went ahead. Just knowing she has done some good in her short life.”

The couple found out at just 13 weeks into the pregnancy that one of their twins had anencephaly.

The condition prevents the brain and skull from developing properly and occurs in about 6 of every 10,000 births nationally.

Babies with the condition usually die before being born or within a few hours or days after birth.

The couple, including five-year-old daughter Maddie, got to spend some precious time with Hope as they held her in her final moments at Addenbrooke’s hospital. Bereavement midwives also made a special memory box.