“You go into a hospital with all your hopes and dreams, and your life can change in an instant. I am passionate about ensuring that parents who find themselves in the situation I was in have the option of going to Hummingbird House.”
The day her first son was born was the same day Emma Clark was told that he would not survive.
A premature labour, a rural location and health complications meant that her newborn son Khy was whisked away from her before she had a chance to hold him. A fleeting touch through the window of a humidicrib was her only physical contact before he was flown from the Longreach Hospital to Brisbane with an emergency response team. There was no room on the flight for Emma.
It was later that day when doctors in Longreach told her the news that there was nothing more the Brisbane team could do, and that her son was dying. She hadn’t had the chance to hold him before she was given the news.
Though Emma didn’t know it at the time, she had in that moment become one of the 3,700 Queensland families who are in need of paediatric palliative care at any given time.
At that time, there was no children’s hospice in Queensland.
Emma Clark was a young, rural, first time mum, when she needed Hummingbird House.
Emma had been working in shearing sheds in outback Australia when she learned she was expecting. She celebrated her 21st birthday while pregnant, and like all first time mothers-to-be, Emma was filled with hopes and dreams for the life of her baby boy.
Early in the pregnancy the doctors identified that Khy had gastroschisis, a condition that causes the intestines to form outside the body. The doctors were confident that it was quite an easy thing to fix, which reassured Emma. Unfortunately, that did not turn out to be the case.
Emma was flown to Brisbane along with her partner, to be with Khy, hold him, turn off the life support, and say goodbye. They arrived from Longreach with little money and only the clothes on their backs. Hospital staff said he would pass away within hours.
Khy held on for eleven days.
Advised not to feed him or give him any fluids as it would only prolong life, Emma watched helplessly as Khy wasted away inside the hospital.
“As the days went on it was apparent we weren’t in the right setting, but we had nowhere else to go,” Emma said.
“For the first few hours I was so overwhelmed and focussed on Khy that I didn’t even notice I was in a hospital. You want to be somewhere with qualified medical support for pain relief, but when hours became days I really felt we were in the wrong place. We were in a tiny room with no windows, no natural light, sleeping on a futon while just across the way women were giving birth and taking their babies home with them.”
“As I started to come to terms with what was happening I started to think about all the hopes and dreams I’d had for Khy, and how I was losing them all. I wanted to watch him grow up and be happy. But the reality was that there weren’t going to be any first steps or first days at school.”
“There wasn’t going to be any miracle ending for Khy, but given the time over again I would not have wanted him to spend his short life in a cold and clinical hospital. I would have tried to squeeze in as many moments as we could with the time we were given. I would have just been his mum.”
Emma said that since losing Khy she has learned a great deal about what palliative care should entail for children and their families.
“I didn’t even know what palliative care was. I was only 21. I thought it was for old people, and no one used the word palliative to explain to me what was going on at the time. I’m only now learning what it was I needed and what children’s palliative care should be.”
“It was not the medicine that let me down. Queensland just didn’t have the facilities I needed to provide me with quality paediatric palliative care.”
“If we’d had Hummingbird House I would have taken Khy for his first walk in a garden, we’d have had our first impromptu picnic. He could have felt the sunshine on his face and I would have brushed his feet over the grass. We would have listened to birds and music, and breathed in the fresh air. He would have heard the sounds of children laughing. In those few short days, in the right environment, we would have made real moments. In those eleven days, he would have had a life.”
Emma is a passionate advocate for high quality paediatric palliative care for all Queensland families who need it, including rural and regional families.