Why a mother continued her pregnancy knowing her baby would die

Emma Gilkison had to make a choice no mother should have to: whether to continue her pregnancy knowing her child would die.

During a routine 12-week scan in 2014, she and her partner Roy discovered their unborn baby had a deadly heart defect.

After seeing her baby's heart "looking like a twinkling star" on the ultrasound screen, she jumped onto Google where she discovered the condition 'ectopia cordis', in which the heart develops outside of the chest.

It's so rare it affects just eight in every million babies born.

Doctors confirmed the diagnosis and Ms Gilkinson immediately looked into treatment options. A handful of babies with ectopia cordis have been operated on, but tragically that option was ruled out 20 weeks into the pregnancy.

"It was revealed in another scan that not only was our little boy's heart in the wrong place, it also had other defects, so there were just too many problems for a surgeon to try to fix," she told The AM Show.

She was faced with the earth-shattering decision of whether to abort or continue with the pregnancy, knowing her son wouldn't live long outside her womb.

"That was a really heartbreaking moment. I held onto a little bit of hope that our baby might have been one of those miracle wonder kids that survives when nobody thinks they're going to.

"I realised that whilst there was hope for our baby to live, I would have been willing to do anything for him to give him a chance at life."

Ms Gilkison made the brave decision to continue the pregnancy and enjoy her time with her son, even travelling to Tonga at 35 weeks to swim with whales and their calves.

"I began thinking I'd like to have a bit of time with my baby, rather than no time at all."

Knowing her son would never have a first birthday, she and her family threw him a birth month party before he was born, complete with cake, balloons and a puppet show.

Jesús Valentino was born on October 26 and lived for 15 and a half days.

"I know that sounds like nothing, but actually it was far more time than we'd dreamed of," Ms Gilkison says. "They were really days of miracle and wonder, they were incredible."

About 95 percent of all babies with ectopia cordis are stillborn or die within hours, so she and her family felt blessed to have those days with him.

"I know it sounds like a terribly sad situation to be pregnant with a baby that's going to die, but it was also a surprising profound and love-filled time in our lives. Our baby gave us this real crash course in living in the present because we wanted to cherish all the time that we had with him."

Ms Gilkison says there needs to be more discussion about grief in our society.

"The grief of a miscarriage, the grief of infertility, the grief of a baby who dies. I think for the families who experience that it's really wonderful if people around them can acknowledge what they've been through."

She and her partner, a lapsed Catholic, received a lot of support from the Church as well as the Buddhist community.

"They helped us to frame things in our own minds so we could see the value that might come from a very brief life. My baby's life did pass in less than the blink of an eyelid but he created such great love, and now the legacy of his life is really one of great love rather than loss."

They now have a second child, whose own 12-week scan was coincidentally just a few days after the anniversary of Jesús' death.

"It was actually great timing because we'd had a year to grieve and we were really ready to welcome a new baby into our lives."

In September 2018 Ms Gilkison published The Heart of Jesús Valentino in which she chronicles her son's brief life and the meaning it brought her.

The 15 days between Jesús' birthday - which is this Friday - and his death are a special time for her every year.

"I think about him a lot. I don't like to say that I've lost a child because he doesn't feel lost to me, he feels very close."