British mom-to-be Emma Lee was only 13 weeks into her pregnancy with boy-girl twins when she and husband Drew received the heartbreaking news: Though their son was developing normally, their daughter had anencephaly, a serious birth defect that meant she'd be born without crucial parts of her brain and skull. Some infants beat the odds and survive childbirth, but the majority do not.
But instead of falling to pieces, Emma and Drew almost immediately made the decision to continue with the pregnancy so they could donate their daughter's organs after she passed. They were inspired by the story of UK baby Teddy Houlston, who earlier this year was also born with anencephaly and lived for 100 minutes before donating his heart valve and kidneys. "We were distraught, but we didn't want her to die in vain," Emma told the Daily Mirror.
Throughout the rest of the pregnancy, the couple prepared themselves for the inevitable, including planning their unborn child's funeral. The difficult pregnancy ended last week, when their babies, Josh and Hope, were born. Josh arrived a healthy 5 pounds, while Hope weighed a mere 2 pounds, 13 ounces. The little girl stayed alive for 74 precious minutes, and her parents say she was blanketed in love, hugs, and kisses for every single moment. Emma was holding her when Hope passed away.
A few things comforted the grieving family: that their baby girl looked so peaceful, that they were able to spend some time with her, that their story would inspire more people to sign up to be organ donors, and that she would go on to help others. In the end, baby Hope's kidneys were transplanted into an adult patient and some of her liver cells were frozen for future use. "Today she is still living on inside someone else and it helps with the grief," Emma told the Daily Mirror. "It's taken some of the pain away."
Bonnie Gibbs Vengrow is a New York City-based writer and editor who traded in her Blackberry and Metro card for playdates and PB&J sandwiches—and the once-in-a-lifetime chance to watch her feisty, funny son grow up. Follow her on Twitter and Pinterest.
