Of course, many life experiences led to Fiona Hawthorne managing Queensland’s only children’s hospice. But one conversation with a grieving mother, many years ago, was key.

Dr Hawthorne (PhD) says the woman understood that her baby had severe congenital abnormalities and that he would die soon after being born. Accepting that devastating news, she had decided to carry the baby to full term, so she and her partner could hold their baby in their arms as he died.

Despite that simple desire being clearly articulated and well understood by her treating doctors, poor communication got in the way. She went into labour in the evening, attended by staff who didn’t know her, or understand her baby’s prognosis.

“Rather than follow mum’s wish for the little person to be given to her or her partner, [the baby was] taken out to be resuscitated and so that little person died in a cot rather than with mum,” says Dr Hawthorne, now general manager of Hummingbird House in Brisbane.

“She spoke with me about this incredible sense of distress she had. I thought, we should be able to do this better.”

Dr Hawthorne says the health system has significantly improved management of complex deliveries and the same scenario would be unlikely to occur now. But hearing that sad story about 15 years ago heightened her understanding of the health system’s shortcomings, inspiring her to seek out places overseas where perinatal hospice care was done well.

In 2007, Dr Hawthorne was granted a Bob and June Prickett Churchill Fellowship, enabling her to travel to the US and UK. Over six weeks she visited six hospices that specialised in palliative care for babies before, during and after birth. The experience honed her understanding of perinatal loss as a myriad of lost wishes and the lessons stay with her still.

Dr Hawthorne says it is natural for parents with a wanted pregnancy to start imagining, early on, the experiences they will one day have with their children. They might picture themselves pushing their child on a swing, taking them to play soccer, or holding them in their arms and rocking them to sleep. Part of the grief experienced by parents whose babies have died before or soon after birth, is knowing those imagined scenarios will never occur and they won’t get to know their child at all.

“If you were to bury someone who lived even a couple of years, it is tragic, but you could say ‘He had the most beautiful brown eyes’ or ‘She just loved it when I pushed her on the swing’. You’ve got something you knew about them,” says Dr Hawthorne.

“When a little person dies before they are born, sometimes families say ‘I don’t even know what colour their eyes are’.”

While in the US, Dr Hawthorne met families facing this reality with support from the Deeya perinatal hospice program. She met expectant parents who were going to a baseball game while their baby still had a heartbeat, taking photos of what was a precious family experience, rather than a husband-and-wife date. She also met Jewish families celebrating Hanukkah at the incorrect time of year, knowing it would be the only chance for their unborn baby to be part of this tradition. Deeya encouraged families to talk to their unborn babies and make precious memories while they were still with them.

“Fate had dealt them this terrible experience and we were invited to help them make meaning from it. The more we could help them in the time they were pregnant the better they could grieve and manage their loss.”

In addition to experiences, meaningful physical reminders were also valued. The program provided hand-made quilts for parents whose babies were intensive care. When their baby died, they could wrap their baby in the quilt and hold them.

“Parents could take the quilt home as a memory of that child or to bury them in it, like an extension of their embrace going with them.”

Dr Hawthorne documented her Churchill Fellowship findings and hoped to create a state-wide service to support families, but “love and life” got in the way and she put this work on hold. Years later, an expert in neonatal medicine and bioethics called out of the blue, wanting to use her fellowship in his presentation to the Federal Government. That in turn sparked an invitation to speak at a conference where, fortuitously, she met Gabrielle Quilliam. Ms Quilliam and her husband Paul fostered a child affected by a life-limiting condition. They went on to become co-founders of Hummingbird House.

Hummingbird House opened in October last year with Dr Hawthorne at the helm. While the hospice has been designed to accommodate families and newborns. At this stage, it caters to children aged 12 months to 18 years and their families, but it has been designed to accommodate newborns as well. Strategic plans include a new service for children in-utero and babies, to be operating within the next three years.

Dr Hawthorne estimates that each year, 250 families living in Queensland have babies diagnosed with a lethal foetal abnormality.

“That’s families whose baby has been diagnosed with a condition that means they are likely to die before during or after delivery.

“Those women won’t give birth at Hummingbird House. But we will be looking to see if our midwives could be present at the delivery and facilitate the transfer [from hospital] to Hummingbird House, or Skype support to families in rural and remote areas.”

In the meantime, Dr Hawthorne is mindful that these vulnerable parents rely heavily on people within their communities for support. Sometimes however, friends, family or acquaintances make well-intentioned comments that are “terribly off the mark”. Among those that can be distressing are “I’m sure you’ll have another baby”, “You didn’t really know them and perhaps that was a blessing” and “They are in a better place now”.

Dr Hawthorne suggests creating a “holding space” with parents, which is akin to walking beside them, allowing them the safety of knowing they are not alone. Rather than presuming to know what support they want, it is better to ask what they need and how you can help.

“The best thing people can say is, I’m really sorry, I don’t know what else to say or how to help you. How can I help you? Do you want to sit with me and cry? Then let’s just sit and cry. Do you feel you need to be busy? Can we clean the house? What can I do to help you right now?”

When people are at a loss to know what they need, Dr Hawthorne suggests gentle prompting questions, starting with ‘have you thought about’, ‘have you considered’, or ‘could we try’.

“The other really important thing is this little person had a name. Use their name. It is really important for you to say, ‘I can understand you are really missing Emma. Emma would have been two now, wouldn’t she?’.”

Dr Hawthorne says this is a powerful way to show parents that their child is not forgotten. Similarly, acknowledging they were a parent on mother’s or father’s day can be helpful, as “you don’t have to have a child in your arms to be a parent”.

Important too, is simply allowing the parent to cry.

“If you are speaking with someone who is in the grip of grief, particularly perinatal grief, reassure them that it is okay to cry. You might say, ‘I know you are getting upset and teary – just cry and I’ll keep talking with you’. Sometimes the tears don’t need to be acknowledged, they just need to be shed.”

She says parents grieve in whatever time or manner that is appropriate to them. Afterwards, they tend to say they have no idea how they got through it.

“Sometimes they don’t see themselves as being strong or resilient, but having survived hour to hour,” she says.