The new parents of an edible 5 1/2 month old baby girl whose mother mentioned to the baby healthcare nurse that she seemed to blink a lot. Referrals and MRIs and tests and everything else it turns out she has a rare disease which sees tumours growing on your organs. She has 8 tumours in her brain and they were doing further tests to see if the ‘worse’ ones could be operated on.
The 8 year old boy with a tumour the hospital neurosurgeons had deemed too dangerous/difficult to operate on. His family had managed to get in to see Dr Charlie Teo who said he would operate. Watching the parents grapple with the decision of not operating and watching their son die or operating and all the associated risks that go with that decision was heartbreaking. It was clear the father was not coping with the situation at all. One morning they were gone and when I asked another parent about what had happened she thought they’d moved to ICU. I saw the mum a few days later laughing with a friend or family member. A moment of joy in a world of sorrow or good news I do not know.
The teenage girl down from the bush who had severe scoliosis. She’d had rods put in her back and the look of incredulity on her father’s face when he said to me, ‘she stands up straight now’ was inspiring. She had however just found out she would also have to wear a brace for at least a year, something the surgery was hopefully going to eradicate.
The little girl in the bed across from us who was coming up to 10 months in hospital. She had been getting headaches but not major ones, just often enough for her mum to seek medical advice. Numerous specialists in myriad fields came to the final point of having an MRI which revealed a tumour the size of an apricot kernel right in the middle of her brainstem. Again, parents faced with a life or death decision for their child. Again, Dr Charlie Teo operated. He assured her she would walk and talk again. When she first came out of surgery – and for many months following – she could only move her big toe on her right foot and blink. She can now move her left arm and breath unassisted but has lost her swallow reflex so has a trachie which her mum has to suction regularly and also feed her through a gastro tube. When she first woke up she said to her mum she wanted some cold water and her mum had to tell her she couldn’t have it. Her mum said she still can’t bring herself to eat or drink in front of her. They had been out of the hospital and home once, just during the day. On the Sunday of Oscar’s stay I saw them going out once more. Sometimes you have absolutely no control over the rate of progress but have the ultimate power in determining what is success.
The 16 year old boy who was a paraplegic. He had been a twin born at 24 weeks with an identical brother who took all the fluid and nutrients. While the twin brother was technically the healthier of the babies the boy in the bed across from us was born first. The obstetrician initially told the mother that the second, slightly bigger (they weighed 600 and 700grams) twin was stillborn, months later confessed to her that he was breathing when born but he thought she’d already have one disabled child (she had five other sons as well) that was a big enough load to bear. I’m still trying to fathom someone making that decision – thinking they had the right to make that decision – on a mother’s behalf but I guess, in the heat of the moment these things do happen. Anyway, her disabled son also had undergone surgery on one of his legs and when the orthopaedic registrar came around he clearly hadn’t read all the notes and asked him if he was in any pain. The boy pointed out that he couldn’t feel his legs so no, not really but even then the registrar didn’t twig and was all, ‘good, good’. His mum and I could both talk underwater so we had a lovely time comparing notes and bad backs and all the rest.
The 15 year old boy who’d been mucking around with fire crackers at home and is now an amputee. His mum was an immigrant 20 years ago and was so clearly traumatised by the events that my heart was breaking for them. At one point she said to me, ‘All my life I have done what others have wanted me to do. First my parents, then my husband, then my children and now doctors. I just want for once to do what I want.’ He son desperately wanted to go home but mental health services were apparently putting the kibosh on that. the first thing she said to me when we met in the kitchen was, ‘do you know what the rules are about taking your child from the hospital and not coming back?’. I tried, ever so gently, to say that while all of us were desperate to get home sooner rather than later, sometimes being where you didn’t want to be was actually for the best in the longer term.
The almost 11 year old boy who had fallen three metres from the top of a water slide to land, on his back, on rocks below in Fiji. He was helicoptered to the capital where they were ready to whip his damaged spleen out but luckily CareFlight flew out of Queensland and delivered him home. He’s got a damaged spleen and partially deflated lungs but will make a full recovery. Meanwhile his sister is spewing that her brother is getting all the attention.
The profoundly disabled teenage boy in the room next to us once we had moved up to the adolescent ward whose parents would come in of an afternoon/evening and just sit beside him. The respect and dignity the staff treated him with was remarkable.
And so it goes on.
We are home but many of these families are not.
Some are just starting on this bastard of a road of having a kid where everything is not going to be alright. Some will leave the hospital never to return as their misadventure was a one-off event. But everyday, children and their families are in that hospital fighting demons no one should have to.
In a fortnight Sydney Children’s Hospital (where we and all these other children were) is holding one of it’s major fundraising events – Gold Week. Even if you don’t host an event you can donate. Think about it. If you’re not in Sydney or Australia just take a moment to think about the children’s hospital in your city/area/state and maybe put it forward as the charity your workplace should support or just simply make a donation. Go on.