When Keri Young, from New Orleans, US, was 19 weeks pregnant, she and her husband Royce learned their daughter had anencephaly, a condition where a child is born without parts of their brain.
They were told their baby, who they have named Eva, could live for between a couple of minutes to a couple of days, but she wouldn’t live past that.
The couple’s story touched thousands when they initially shared it and they have now opened up about why their daughter is a “miracle”.
“She’s healthy right now, and I love feeling her kick, and that was surprising,” Keri Young told Good Morning America on Thursday 16 March.
“She’s as perfect as she’s going to be right now. So I don’t want to give that up.”
The couple want to tell others not to feel saddened by their story.
“Now is not the time to be sad,” Young continued. “I keep telling people we have a whole lifetime to be sad.
“But now, she’s alive and she’s kicked and for this pregnancy, that’s the most joyful part.”
She added that Eva will be a miracle to another family who need a donated organ for their baby.
Speaking about her daughter’s funeral, she added: “I want there to be so many flowers for her, because she’s not getting a birthday or graduation or a wedding.”
The couple have been sharing their journey on Facebook.
They initially announced the news in December 2016, writing: “This is our daughter’s perfect heart. She has perfect feet and perfect hands. She has perfect kidneys, perfect lungs and a perfect liver.
“Sadly, she doesn’t have a perfect brain.”
The couple have continued going to their routine checkup scans and updating followers on how Eva is growing.
On 6 March, Young wrote: “Eva update. But first, look at those perfect fingers!
“My fluid level only went up one point this month but my belly grew which means Eva is growing and the fluid is stable. Our hope is it continues to stay that way. It’s the little victories.”
Since speaking out, Young said she has received hundreds of messages and stories from families.
“Thank you to everyone,” she wrote on Facebook on Thursday 16 March. “It means so much to us that you all care about Eva’s life.”