"At 14 weeks, our pregnancy journey changed course with an unusual test result."

Content warning: This post deals with stillbirth and neo-natal death and may be triggering for some readers. 

Joy. Anticipation. Excitement.

Everything I thought having a baby was supposed to be.

Pregnant with my first child, my husband and I experienced the joy of a positive test, the anticipation of our first scan and the excitement of announcing the news to family and friends.

At 14 weeks, our pregnancy journey changed course with an unusual test result. By 16 weeks, we had learned our daughter, whom we named Olive, had a Congenital Diaphragmatic Hernia (CDH).

In Australia, two families receive this diagnosis each week. But like most of them, we had never heard of CDH.

I recall saying nonchalantly to the obstetrician, “So we’ll just monitor it then?” She explained that a hole in the diaphragm would affect the healthy development of the heart and lungs.

We were immediately referred to the high-risk unit at the Royal Women’s Hospital. Here, the experts gave us hope. While CDH is often fatal, they said Olive was showing positive signs and had a reasonable chance of survival, and also a shot at a normal childhood.

My pregnancy became a whirlwind of appointments, specialists and waiting rooms. My husband and I felt lost and baffled by the medical system we’d been thrust into. We were drowning in percentages, risks and medical indicators. Forced to make life and death decisions based on advice from doctors we’d only just met.

As my bump grew, navigating the outside world became just as difficult.

The delicate balance of wanting information, but not getting caught up in the online spiral of other peoples traumatic experiences.

The well intended by at times offensive comments or advice. The tempering of other peoples expectations. The pregnancy small talk of ‘how are you feeling?’ or ‘do you know what you’re having?’ The need to hope for the best, and be prepared for the worst.

As the weeks ticked by, the outlook became bleaker. Despite this, we maintained a strong sense that Olive would make it.

When doctors told us the official survival rate for babies with CDH was 50 per cent, we held on to the good end of those odds.

When just before Olive’s birth we were told that complications had reduced her chance of survival to just 10 per cent, we held on to that too.

This hope and belief in Olive became an anchor. When the fear started to creep in, we would come back to this, a touchstone that carried us through.

Surprisingly, throughout all the drama, we found ourselves feeling incredibly grateful. Grateful that our lives had been so untouched by misfortune until now. Grateful that we were in the hands of some of the best doctors in the world. Grateful we had each other.

And grateful there were so many people willing this little life on.

LISTEN: Our podcast for imperfect parents discusses what to say to someone who's lost a baby (post continues after audio...)

It felt like the whole universe was involved in bringing Olive to us. Doctors and nurses filled our days. Passed ancestors and hopes for the future touched our dreams. Friends and family from across the world offered support – in a prayer, a thought, a wish. And while from different countries and belief systems, their message was the same: one of love and hope.

I remember thinking how I would one day tell Olive how loved she was before she’d even come into the world. How desperately this worldwide community wanted her to make it.

Snippets of lines would come to me – a rhythm, a phrase, a beat.

I started to jot them down. A children’s book was forming.

Our little Olive Grace was born at 32 weeks.

We held her. We kissed her. And we loved her.

She died in our arms, just six hours after she was born.

In the months that followed, the children’s book I had begun to write took on new meaning.

The process was equally cathartic and joyous. I felt Olive with me as I wrote the words. Olive telling the story of what could have been.

While our story didn’t have a happy ending, From Above the Clouds does. It’s a magical and uplifting tale about a sick baby who is guided into the world by the love, hopes and dreams of family and friends. The story travels across the globe, and illustrator, Martina Heiduczek, perfectly balances the deep themes with playfulness and whimsy.

The story will resonate with so many who have experienced a difficult road to parenthood, and the many children who have had a difficult start to life.

But more than anything, it is a story for all children who are loved, as Olive was. And as our second child will be, when he or she arrives early next year.

From Above The Clouds is available in select retailers or online at www.fiercegracepublishing.com.au.

For more information about Congenital Diaphragmatic Hernia (CDH), visit CHD Australia.

If you or someone you know is struggling with post natal depression or lost a baby, please seek professional help and contact SANDS on 1300 072 637. If you are in immediate danger, call 000.