‘I prayed I’d meet him alive’: Heartbreaking reality inside Qld’s baby hospice
It’s the place where hundreds of little souls have taken their last breath. But the reality inside Qld’s children’s hospice is more hopeful than you’d expect. WARNING: Distressing images
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A little bib bought in excited anticipation but never used, a piece of a wedding dress and, etched on paper, words of love that will never be heard by the precious little ears of babies gone too soon.
The women sit in a circle sewing their little keepsake dolls that they can hold when they need to and together they talk.
They speak the names of their children and they share tears with the relatively few people that truly know what it feels like to carry a baby you only had for a fleeting moment, but will love for eternity.
It’s part of the service provided by Queensland’s only children’s hospice, and art therapist Judy Gordon says that the support shown to families during the death of their child is extended well beyond the final goodbye.
“I think particularly with babies for example, who are only alive for a few months, or even hours, parents get worried that because they were here such a short time people won’t remember them … these projects give them the chance to talk about their babies,” Gordon says.
You’d probably never believe it unless you get the chance to visit, but Hummingbird House is far from a sad place.
Hundreds of little souls have taken their last breath within its grounds, but the hospice’s warm and friendly atmosphere is a fitting tribute to the children and families who have – through their darkest days – relied on the dedicated team of nurses, counsellors, art therapists, chefs and volunteers.
For as many tears of sadness that have been shed there, it’s the ones of joy that have a lasting impact.
It’s hard to think of a more vital service and yet Hummingbird House, proudly operated by Wesley Mission, relies on the generosity of Queenslanders to meet operating costs.
Every state and federal budget, the team has a nervous wait to see if funding will be extended, retained or cut.
In fact, if an increase in ongoing funding can’t be secured soon, there’s every chance that the fastest growing part of the service won’t be able to be offered beyond Brisbane.
More and more Queensland families are using the Hospice in the Womb program and perinatal palliative care designed to support families facing the difficult diagnosis of a life-limiting condition in their unborn or newly born baby.
Regardless of where a family lives at the time of referral, they are case managed and met by a specialist nurse practitioner who explains how Hummingbird House can support them during the time of pregnancy, birth, and beyond.
The hospice has been accepting referrals for babies diagnosed antenatally with a life-limiting condition since opening in 2016, and over those years has seen an increase in referrals both antenatally and shortly after birth.
Hospice in the Womb helps families to process the diagnosis at their own pace, learn how to connect with their unborn baby, make memories, consider options, and explore the experience of anticipatory grief and loss.
“How do you do it?” It’s a question almost every person who works at Hummingbird House gets asked, including nurse practitioner and care services manager Kelly Oldham.
“You do get that question a lot and people say it must be so sad, but it doesn’t feel like a sad place to work,” she says.
“I mean, on a daily basis, there’s lots of joyful things, it feels like this little bubble where it’s safe. You see families walk in (and) you can almost watch them drop into the space and relax and feel sort of protected in that bubble.
“It is such a privilege to actually be welcomed into their difficult moments and you get to a point of trust very quickly. And that feels like quite an honour.”
Government funding from both state and federal levels only covers 50 per cent of operating costs and with cost-of-living pressures hitting everyone hard, donations to the hospice have dropped.
“We’ve had a very generous donor supporting the perinatal hospice program for just over a year and that’s really allowed us to focus and grow in this space, and expand and offer more services to families out of the southeast corner,” Oldham says.
“But we would like to expand that further and ensure that we can continue to provide this really, really important service to Queensland families.”
BABY CHARLIEGH-MAY
Precious four-month-old Charliegh-May looks the picture of health – rosebud lips, bright blue eyes and perfect rosy cheeks.
But the tragic reality for her besotted parents Keonie and Kody Bradshaw is that their tiny daughter could stop breathing at any moment.
Meeting the little bundle at Hummingbird House it’s clear she’s at her happiest sleeping peacefully in her doting mother Keonie’s arms.
Every so often she opens her little eyelids to make sure mum’s still there, before drifting off on another peaceful slumber.
The family is visiting from Chinchilla for a weekend away and to have a little respite from the tough journey of knowing that their baby won’t make her first birthday, and living with the uncertainty of not knowing exactly how long they will have with her.
Hummingbird House first met the family, including one-year-old Phillip, when Keonie was still pregnant with Charliegh-May.
The little bub had just been diagnosed with a complex heart condition in utero and the staff at the facility wrapped their arms around the family like they have for many thousands of people who have had to make the heartbreaking walk through the doors of Queensland’s only children’s hospice.
The dedicated team was able to help the couple with counselling, planning how they wanted the birth to go and what they wanted Charliegh-May’s potentially very short life to look like.
“We were told (by a heart specialist) that she’s going to die and we’d be lucky to even have her, let alone bring her home with us,” Keonie says.
“We weren’t meant to have her … she’s our miracle baby.”
After a textbook pregnancy with their first child, the couple says their whole world came crashing down when they found out their little one would not make it.
“I was just very scared. We were always worried about the slightest things,” Keonie says.
“We were told that she could pass during labour and that made me really upset, so I decided not to have the monitors on so I couldn’t see or hear a heartbeat.
“So if anything did happen, we didn’t want to know, we just wanted to be able to get it done.
“And then when she came out, she didn’t start crying straightaway, but after she did we just couldn’t believe it.”
Not long after she was born the family made its way to Hummingbird House where they expected to say goodbye to their little girl.
They set about making important memories with their newest addition – professional photos were taken, canvasses were made with their handprints, and Hummingbird House gifted them with a special trip to Australia Zoo.
After almost a month, Charliegh-May was thriving and it was time to go home.
The couple say taking their little girl home to Chinchilla was the most bittersweet moment of their life.
“We didn’t think she’d ever get to go home … but I remember holding her on the way home and just crying, I was just so scared of what would happen,” Keonie says.
Kody tries his best to keep the sound of laughter bouncing around the house and makes it his mission to keep his high school sweetheart smiling, but it’s a coping mechanism that doesn’t change the truth of the matter.
“Nobody should have to go through this, nobody should have to lose their child … some days I’m so angry about it,” he says.
“We’re lucky to have Keonie’s family who have been a great support to us and my employer has been great, and of course Hummingbird House.
“And it’s shown that life is just too short not to do the things you want.
“You only get one life and one go around so we might as well have a decent go.”
IN MEMORY OF BABY JACK
When Jack van der Giessen’s heartbroken parents placed his little body into its casket his father made him a promise.
Before he closed the lid and tightened the screws on that tiny little coffin, his dad David told him that his life, that lasted little more than 13 hours, would not be in vain.
“At that moment I made probably the biggest promise I’d ever made to anyone in my life; that I would create a legacy for him.
“That I would do something that would try and make sense of what had happened, to try and make some sort of good, and that was the very last thing I said to him before we said our final goodbye.”
The next time he was in that room at Hummingbird House was to present to then state health minister Steven Miles, in a bid to secure more funding for the facility that gave his family the one thing they needed with their baby after he passed – time.
Jack and his twin brother Oliver, now aged four, were born around 1am on Good Friday morning in 2019, becoming the van der Giessen’s third and fourth-born children following Sophie, now 9, and Annabelle, 6, before little Charlotte, who just turned two, joined the gang a few years later.
The couple had already received the devastating news that Jack was unlikely to be born alive, and if he was, he would not live for long, on account of a neural tube defect called anencephaly.
Anencephaly results in babies being born without parts of the brain and skull.
Despite his dedicated mum Lil’s best efforts, the boys ended up having to be born via caesarean, and requiring a general anaesthetic.
It’s a scary time in any woman’s life, but much worse for Lil, who went to sleep that morning not knowing if she’d get to meet her baby son before he slipped away.
“I just prayed that I would meet him alive and I’m just so glad I did because I got 13 hours with him,” she says.
“He was baptised in recovery and I’m just super thankful because often those little anencephaly babies can either pass in utero, or either live for a few minutes or a few days. It’s really unknown. So the fact that he lived the 13 hours is pretty amazing.”
Both sets of grandparents, Lil’s siblings, the twin’s siblings and their godparents were there to meet the newest members of the van der Giessen clan and for those sacred hours holding their babies, breastfeeding them, singing and showering them in words of love, life was bliss.
But those special hours passed all too soon and it wasn’t long before a nurse confirmed the heartbreaking moment, through her own tears, that Jack had passed away.
“There’s no way to describe it. There’s no way that you’d want to describe it, because you’d never wish it on anyone; when you lose a child, part of you breaks forever,” David tells Qweekend sitting around the family’s dining table in Wynnum.
On Easter Sunday, the family transferred to Hummingbird House for after-death care.
The suite they spent most of their time in looks like most of the rooms at Hummingbird House – it’s welcoming, homely, modern and fresh.
But this particular room is probably the most sacred space in the facility.
It’s a temperature controlled room that allows loved ones time with their child after they’ve passed, to make memories, honour their life and do the hardest thing most of them will ever do – say goodbye.
Lil says she remembers putting her girls and Oliver to bed in another room and just being able to go and lie with Jack in bed and do things many parents take for granted: change his clothes and hold him to her chest while she showered him in what felt like a lifetime of love.
The couple also credit the suite and Hummingbird House with helping their older children understand what had happened to their brother and processing their grief as they grew.
It’s not a sad place for the family and when the children visit the house it’s with excitement at the promise of more memories to be made.
It’s been more than four years since Lil placed her lips on Jack’s head for the last time, and the pain of losing him is ever present.
“When you talk about him and remember back to that day, it’s just as hard,” she says.
“I think we can grow bigger around our grief and so while I don’t spend every second of my day thinking about Jack, talking about it and even remembering that grief in that moment, it is just as intense as it was.
“It’s just a new normal.”
As for David, he’s kept his promise to little Jack. The advocacy work he does for Hummingbird House has become like a second job and his determination to share his family’s story with the politicians – who have the power to help more families just like his – has already been credited with funding boosts.
“I will never be able to repay them for everything they’ve done for us,” he says.
“They gave us the greatest gift and that was time, time to create memories that we might not have been able to create otherwise.”
IN MEMORY OF BABY WHITTAKER
Every night when Crystal and Ryan Zeeman go to bed, they place the ashes of their tiny baby Whittaker on their bedside table.
It doesn’t feel right to leave her out in the lounge room alone and although they can’t cuddle their baby, they need to have her close.
It’s been two years since their firstborn, Whittaker Te Riunui Angela Zeeman, passed away in utero at 40 weeks due to an unpreventable cord accident.
Her beautifully decorated nursery stays virtually untouched.
The only major change has been that the shelves originally designated to hold Whittaker’s clothes are now filled with care packs her parents create to leave at hospitals for other parents of stillborn babies who are about to walk the same devastating path.
Whittaker’s Wings is in the process of registering as a charity and has donated more than 200 care packs to hospitals around the country.
The packs include basic toiletry essentials, a warm tracksuit, a special book and notepad, and a brochure sharing their story as a bit of a guide for what heartbroken parents may expect in those first few overwhelming days.
“It’s how we parent Whittaker now,” mum Crystal says.
Crystal and Ryan say they knew there was no way they were leaving the hospital without their little girl, especially given Crystal’s Maori culture means deceased loved ones are traditionally brought home for three days and people visit and pay their respects, but they were unsure of the practicalities.
The couple, who are now expecting another child, were introduced to the after-death care service provided at Hummingbird House and say they couldn’t believe such a tailored service was available free of charge.
“We got to set up a space, we had a two-bedroom apartment and one of the bedrooms we made that her day room,” Crystal says.
“We had all of the mattresses in there and blankets, because the airconditioning had to be set at like 16 degrees, and everyone just sat in there with her.
“We had music on all day, candles everywhere, fairy lights and just made it really peaceful and calm. We’d all sit in there with her, read her stories, and our nieces would run in and out all day. I got to sing her nursery rhymes and yeah, that was really special.”
Through their work now advocating for the rights of stillborn parents and meeting other bereaved families, the couple say it’s clear what a difference having time to say goodbye to your child and create special memories with them makes.
“So many people we meet didn’t get the same chance we did,” Ryan says.
The proud dad has his daughter’s name tattooed up his arm, along with a Hummingbird – a tribute to the place that will always hold a special place in their hearts.
“That’s the only place we want to be for her birthday; it’s kind of like our place for her now,” he says.
“So yeah, we go there every year on her birthday, have dinner on the roof, and on hard days we go sit outside and just look at it.
“For Mother’s Day and Father’s Day we still sit out the front.
“That’s her home.”
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