If I Knew You’d Die, Would I Still Carry You?

Why would a woman willingly continue a pregnancy knowing her baby was going to die?

Wouldn’t she just be postponing an inevitable farewell and carrying a profound pain for nine months?

If I had been asked these questions before I was the woman whose unborn baby had received a fatal diagnosis, my responses would have been very different from the ones I have now.

Our journey to understanding what hospice in the womb means, began with a routine 12-week scan.

‘What’s that above our baby’s chest?’ I asked.

The sonographer was looking at the same thing as me on the scan screen. In the swirl of black and white, it looked as if there was a little star flickering on top of our baby’s sternum.

‘I’ve never seen anything like that before,’ she said. ‘All I can tell you is that this is very unusual.’

Roy and I locked eyes, and he squeezed my hand. This was our first baby, and it had taken us a year to conceive.

I’m a New Zealander, and Roy hails from Peru. I’d already begun wondering what shade of caramel our child’s skin would be; that he or she would have big brown eyes seemed a given.

In the first few weeks of my pregnancy, I’d had some bleeding and feared I was going to miscarry. But I hadn’t.

Now we’d finally made it to the 12-week mark; I thought I could safely say all was well with my pregnancy.

Safe Mark

‘They can sometimes do operations in utero… you’re going to be quite the talk around here.’ The sonographer was now talking in half-sentences. She finished the scan and told us a doctor would be in touch.

At the reception, a staff member gave us a blue folder containing a souvenir scan image. In it, our baby was lying on its back and visible above its chest was a small, round orb.

‘What do you think it is mi amor?’

‘I don’t know, but we need to wait for the diagnosis before jumping to conclusions,’ he said.

I agreed, but after I’d dropped him at work and returned home, my mind kept returning to the scan and what it meant.

Could that star above our baby’s chest possibly have been its heart?

I googled my suspicions — 12-week scan baby with heart outside of the chest.

Immediately there was a potential answer: ectopia cordis.

An extremely rare condition, affecting eight in one million babies, where the heart quite literally grows outside of the body.

Later that afternoon, my midwife called with the diagnosis made by the doctor who had looked at the scan images.

She confirmed it was our baby’s heart we had seen outside the chest.

The condition was ectopia cordis. I had been right.

I was devastated, but somehow, I wasn’t surprised.

One of my first reactions was to think that my body had done something wrong, causing my baby’s heart problem.

‘I’m so sorry little one, I’m so sorry,’ I cried, my arms hugging my stomach.

In truth, the cause of ectopia cordis is unknown. After birth, the prognosis for ectopia cordis is very poor, and most babies die shortly after due to infection, cardiac failure, or lack of oxygen.

Yet there are success stories. Surgery has been carried out to create a nest in the chest within which the baby’s heart can sit and skin grafts to seal it over.

I immediately began researching whether this would be possible for our baby.

We were under the care of a maternal foetal medicine team who were doubtful that surgery could be carried out but agreed to refer us to a paediatric cardiologist in another city.

By the time of the appointment, I was almost five months pregnant and had begun to feel my baby’s first kicks. Small thuds that went knock-knock-knock against the drumskin of my stomach.

I already felt deeply bonded with this little being inside me.

We now knew he was a boy and had even begun thinking of names.

I liked ‘Valentino’ because I’d found out I was pregnant on Valentine’s Day. Roy suggested Jesús, pronounced Hey-Zeus, a common name in South America.

But the paediatric cardiologist didn’t have good news.

Along with the ectopia cordis, there were other abnormalities in our son’s heart’s structure.

One of the ventricles was too small; the aortic valve was too narrow.

It was a list of problems too long for any surgeon to attempt to fix. We were told he might not make it to full term, and if he did, he would die at birth or shortly after.

My partner Roy and I now had to choose between two heart-breaking options: to end the pregnancy or to continue in the knowledge our son would die.

It was the hardest decision of our lives.

I wondered if I would feel less grief if I terminated.

Or should I let our baby’s life unfold naturally?

But if I continued the pregnancy, wouldn’t I be miserable, feeling that I was waiting for my baby to die?

What choice held the most possibility for love?

I Am The Face Of A Heartbreaking Choice

Does a baby have a soul in the womb?

Do souls endure, and do they have any power to determine when and how they are born?

Was there a reason our baby had the heart he did?

What would our son choose if he could: to be born, even if only to live for a few breaths, or never to be born at all?

There was no easy way to answer any of these questions. Whatever we did was going to mean a leap into a dark unknown.

To make matters more complicated, Roy and I began leaning in opposite directions. Although Roy was raised Catholic and I am Buddhist, religion wasn’t a factor in our decision making.

Roy hated the idea of our baby being in pain at birth or afterward and thought we would only be inflicting suffering on him by continuing the pregnancy.

I could see his point, but I didn’t know if I could go through with a termination.

At the stage of pregnancy, I was at, this would involve taking drugs to induce labour, and I would give birth.

A massive dose of hormones would abruptly undo all of my body’s instincts to safeguard the baby inside.

Although I was terrified, I decided I wanted to continue the pregnancy, even though I knew my baby was destined to die.

Before finding myself in this situation, if I’d heard of a woman making this choice, I would have assumed she was a religious martyr or that she was running away from an inescapable reality.

As often happens in life, when you find yourself in an extreme situation, your perspective changes, you see things differently.

What it came down to for me was this: if a loved one was given six months to live, would I choose to farewell them as quickly as possible, or would I choose to cherish every moment I had with them?

To The Mother Carrying A Fatally Diagnosed Baby To Term

The situation wasn’t that different with our baby, albeit we would be loving him within the womb and perhaps only for the briefest time after he was born.

After weeks of soul-searching, crying and arguing, Roy and I finally agreed that we would continue the pregnancy. We would meet our son, who wore his heart on his chest.

We settled on the name Jesús Valentino, an exceptional name for a boy with an exceptional heart.

I would never judge a woman for terminating a pregnancy after receiving a fatal diagnosis, but for my family and me choosing to continue, to embark on perinatal palliative care, was undoubtedly the right decision.

Purpose

I had feared the pregnancy might be a long, sad farewell, yet it turned out to be the most profound experiences of my life.

The journey contained the fear of the darkest unknown, compassion from amazing people who walked beside us, a time of being lost in pain and hope where we didn’t expect to find it and enough love to last a lifetime.

———

Emma Gilkison is a writer and mother from New Zealand. The experience of bringing a baby with a fatal heart condition to full term and perinatal palliative care inspired her first book: The Heart of Jesús Valentino. This was longlisted for the Ockham NZ Book of the Year Awards 2019. She currently lives in Brisbane, Australia with her Peruvian partner Roy Costilla and their second son Amaru Gabriel. Connect with Emma at http://www.emmagilkison.com.

Photo Credit: Billie Brook Photography