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Abbey Ahearn with baby Annie.

A mother who carried her terminally ill baby to full term so she could help others has shared her remarkable story of finding beauty in tragedy.

In a piece for Good Housekeeping, Abby Ahern wrote that at 19 weeks pregnant with their third child, she and her husband, Robert, received the devastating news that their baby had anencephaly. Babies with anencephaly, a type of neural tube defect, are born without parts of their brain and skull. Almost all infants with the condition die shortly after their birth.

It's a pretty straightforward diagnosis," Ms Ahern says. "You can see the absence of the top of the baby's head. [The doctor] walked us through what it meant.

"The words 'incompatible with life' just sucked the air right out of my lungs."

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When the couple realised they would only have limited time with their little one, to make sure every moment counted, they chose to find out her gender.

"They told us she was a girl, then gave us a moment to process," she says, adding that they named her Annie - which means "grace".

"We knew she had a purpose, even though she was not made for this world," Ahern says.

While around 95 per cent of mothers opt for late-term abortion, Ahern and her husband hoped for a live birth following a planned C-section.

"We wanted a few precious memories with our girl," she says of their decision.

And while many were surprised the couple chose not to terminate the pregnancy - including Ahern's sisters, who felt she was "crazy" for carrying Annie full term - the Aherns wanted their baby to help others.

"At that first appointment, I asked our doctor, 'What about donating her organs?'" Ahern says. "Annie seemed like an ideal donor: she was perfectly healthy other than her brain. The doctor looked at me, a little puzzled, and said, 'I don't know how to go about that. Let me ask around and get back to you.'"

As it turns out, an infant organ donation had never been done in Oaklahoma, where the family reside.

Before Annie's birth, the Aherns met with their medical team to plan for Annie's arrival. "Each time, the room got fuller: hospital liaisons, neonatologists, chaplains, the ethics committee and people from the NICU," she says. "They wanted to be extremely prepared because there is always such a small window for organ donation, but in our case in particular."

Ahearn, who worked with transplant donor service Oaklahoma Life Share, says her goal was clear. "I wanted Annie's life to ultimately give life to other children."

On June 26, with the support of the chaplain and their grief counsellors, the Ahearns welcomed baby Annie. 

"She didn't cry much, but I heard her making noise. They showed her to me, and she was so beautiful."

Thrilled that Annie was born alive, the family focused on spending her precious final hours together.

"I remember holding her hands and pressing my face on hers and smelling her," Ms Ahearn recalled of the moment Annie was placed in her arms. "I couldn't kiss her enough. When I was pregnant, I was worried that everyone would be there and I wouldn't want to share her and I'd feel guilty. But what happened was that I just was so proud of our girl. She wasn't mine to keep."

The couple's two little girls, Harper, 2, and Dylan, 4, also met their little sister in the hours after her birth.

Later that night, when the Aherns were alone with their daughter, Annie started to gasp. It was time.

Annie died peacefully in her mother's arms, alive for only 14 hours and 58 minutes.

Because her oxygen levels were too low for too long, Annie's organs sadly weren't viable for transplant. Admitting that it was disappointing, Ahern notes, "At the same time, there wasn't any hurry to rush her off to surgery. We got to take as much time as we needed."

Doctors were, however, able to donate Annie's heart valves for recipients, while many of her organs were donated for research.

"Honestly, it took me a while to come to terms with that," Ahern says. "I guess I wanted the closure of knowing her kidneys went to this person who's alive. But there's no way I'll ever know all the people who have been impacted by her story. I will never know the number of lives she was able to save - because not only were her organs donated [to research], but the protocol was also put in place for other infants to donate their organs. Once I started thinking that way, I had peace."

Six months after Annie's birth, as the family continued to grieve her loss, Ahern discovered she was pregnant with their fourth daughter, Iva, who has just turned two.

And of course their third little girl will always be in the hearts. 

"Annie's story is one of hope," Ahern says. "I think it shows people that in the midst of tragedy, there can be beauty.

"Annie was not ours to keep - her story was meant to be shared, and I intend to do so until the day I die."

 - essentialbaby.com.au