Where Angels Fear to Tread: A personal story of the foundation of the Association for the Welfare of Children in Hospital (AWCH)

By Sylvia Rapley-Anderson

In 1973, a small group of parents and health professionals set out to overturn the inhumane and rigid treatment children received in hospitals around the country.

To do this, they formed the Association for the Welfare of Children in Hospital (AWCH), and their vision was to put the welfare of the child at the centre of every decision that

• Language: English
• Publisher: Improbable Fictions
• Release date: Jun 15, 2024
• ISBN: 9780992492229

Book preview

Chapter One

Making Ourselves Heard

For many parents of sick children in Australia from the 1950s to the 1970s, dealing with even the most well-meaning doctors and nurses in the medical system was frustrating, isolating and sometimes overwhelming.

I discovered that my own attempts to have hospital staff listen to and understand my concerns, and to inform me about my baby daughter’s condition, matched the experiences of many other mothers at that time – so often information was held back from us, and we were patronised or ignored.

Helping people from all health disciplines to understand the importance of including parents in every aspect of their child’s illness would become a major goal for me and a small group of other parents and medical practitioners when we came together and formed what would be called the Association for the Welfare of Children in Hospital (AWCH).

This is our story, as we look back on the past fifty years since we started AWCH in 1973.

Sylvia Rapley-Anderson – my story

My husband Alvin and I moved from Wagga Wagga, a large country town in New South Wales, to Sydney in 1969, so Alvin could undertake a science degree from the University of NSW. With no experience of living in a city, it was a huge culture shock.

Our little daughter, Elizabeth (Beth), was 22 months old and I was heavily pregnant. Nothing about the city seemed friendly to me as a young mother. Unlike the town I came from, it was difficult to find a group of other young women with whom I had anything in common.

We rented an apartment in a building that was mostly occupied by elderly residents, none too keen on a young family changing their environment. Alvin’s family lived on the other side of Sydney and weren’t used to travelling within the city. This took them some planning and a full day. In the country, people travelled for miles to catch up with family and friends, but my in-laws were unused to jumping in a car and visiting us for just an hour or two.

Alvin was teaching at a nearby school and studying in the evenings at the university. Feeling very alone, I longed for the company of friends, for the peaceful sounds of the country and for the shade of a friendly gum tree!

Two months after we moved to Sydney, I gave birth to our second daughter at an inner-city hospital. During my labour, I was filled with the sense that all was not right. When Wendy was born, I said, ‘I think there’s something wrong with my baby.’

The midwife paid no attention to me at all but glanced quickly at the nurse who was cleaning my newborn daughter and wrapping her in a towel.

The following day, as the maternity nurse handed Wendy to me for feeding, I said to her, ‘Is there something wrong with my baby?’

The nurse patted my shoulder and said I should calm down.

On the third day, I was convinced I was just being silly and should indeed ‘calm down’. On the fourth day, my GP came to see me. She sat by my bed and said, ‘Mrs Rapley, there might be something wrong with your baby.’

I asked her what the problem was and she replied that they were concerned that the fontanel (the small gap between bones of the skull) was open wider than normal and it ‘needed to be watched’. I asked why and she said, ‘Oh, it may be a tricky brain thing.’ I was immediately chilled into a kind of terror, where I had no questions to ask or feelings I could recognise.

When she was discharging us, the doctor gave me instructions to have the circumference of Wendy’s head measured at the baby health centre. Every week, I asked the health centre sister to take this measurement, and she did so reluctantly and wrote it down on Wendy’s chart as if to humour me. At the end of the month, the nursing sister said, ‘I think there’s something wrong with your baby.’

We consulted my GP, who gave me a referral to a paediatrician. But before we could see him, Wendy began vomiting after feeding one night. The doctor had warned me about symptoms in intercranial pressure and told me to take Wendy straight to the hospital Emergency Department if she displayed them.

Fortunately, we lived close to a major children’s hospital, so we arrived quickly. At 10 pm, a registrar in Emergency examined Wendy, read the GP’s referral to the paediatrician, and told me to, ‘Go home, she probably has an allergy to the milk you’re feeding her. Stop being so anxious.’

When Wendy began projectile vomiting at 2 am and was obviously in pain, we returned to the hospital and fortunately saw the registrar from the Neurosurgical Department.

‘There’s something wrong with your baby,’ he said. ‘I’ll admit her and get an appointment with a paediatrician.’

The next day, we waited until the paediatrician could examine Wendy and tell us the results of the consultation. We’d stayed with Wendy until she settled, then took our eldest daughter to the childcare centre within the hospital and settled her into the playroom. Then we waited in the café for the paediatrician to come and meet with us.

He took a serviette from a stand on our table and began to draw on it what looked like a cauliflower. The rest of the conversation seemed to proceed in a kind of slow-motion whirl, as he scribbled lines through ‘the cauliflower’, which was a diagram of the brain, and told us what a shunt (another word we’d never heard before) would do when implanted in Wendy’s brain.

As I was trying to take in what he was saying, the sounds around me became overwhelming – the clashing of cutlery, the clatter of plates and the conversations at the other tables all drowned out the reality of what I was hearing from the doctor.

I’d realised that Alvin and I had very differing coping mechanisms. Mine was to go into ‘management mode’, where I would try to grasp every aspect of a situation, move things around like a jigsaw puzzle, and work out a way forward. After achieving an outcome, I’d collapse, have no energy left and need ‘time out’.

Alvin’s way of coping was to go straight into denial, where he would focus only on his personal task at hand, leaving the overall management of the situation to me. When I fell apart, he would step in, pick up the pieces and take over. It might not suit some people, but it worked for us.

With Wendy’s illness, I had very little information to help me understand what was happening and no experience, because my siblings and I had never been to hospital. It was like entering another world, one Alvin and I both found hard to navigate.

When the doctor told us we would meet our daughter’s neurosurgeon that morning, I struggled to comprehend what he’d just said. All I was able to register was that our tiny baby needed to have brain surgery. Nothing else seemed to sink in. Soon after, we met the neurosurgeon and he was reassuring and calmly quiet. He seemed to understand how shocked we were.

Looking back, I can see how difficult it must have been for those who had to deliver a patient’s diagnosis to their family. It was an age when medical professionals believed it was better to shield people from any harsh facts.

Also, when you consider that each parent they spoke to had a different level of understanding and a different ability to absorb information, it would have been hard to predict how the family would accept the news. Trying to deliver the facts while remaining positive must have been extremely difficult for the doctors and nurses.

Lack of professional training on how to pass on information to parents certainly didn’t help.

We organised a very quick christening for Wendy in the hospital on the morning before her surgery. My family came to Sydney from Wagga, and Alvin’s family joined us in the children’s ward for the short service. With our families around us, we soon began to feel their support, but I was also acutely aware of their own shock and bewilderment.

Of course, they had their own coping mechanisms, their own abilities to absorb the information about Wendy’s condition. But Alvin and I were distressed to see their anxiety and sadness.

After Wendy was prepped for surgery, Alvin and I decided we’d wait in the garden outside the ward. We let the sister know and sat in the garden, waiting to hear how the operation went. We waited all morning.

Eventually we could stand it no longer and went back to the children’s ward. When we enquired about the outcome of the operation, we were told that it had been cancelled; rescheduled for the next morning because of an emergency that required our doctor to attend. No one thought to let us know.

Finally, the operation went ahead and afterwards our baby was wheeled into Intensive Care. The nurses told us to go home, that there was nothing we could do, and to visit in the morning.

I felt completely helpless.

By an odd set of circumstances, I was able to come back to the ICU because a neighbour had done some building work at the hospital that day. The young tradesman drove me back there, and together we wound our way through dark and gloomy corridors until we came to the Intensive Care Unit. My neighbour winked at the nursing sister and simply said, ‘I’ve bought a visitor for a while.’

I walked into the ward and saw Wendy immediately. Her head was swaddled in a white bandage and her sobbing as she lay on her pillow shocked me. It was just like the sound of an adult sobbing.

Quickly, I put my hand into the cot and stroked her cheek. I spoke softly to her and gently rubbed her tiny body. Slowly, Wendy opened her eyes and shuddered as the sobs subsided, and she began to look around.

Later, when she was finally asleep, the young man took me home again. It was a dreamlike experience and I will be forever grateful to our neighbour.

Now that Wendy had the shunt implanted, we began the slow process of trying to discover what this would mean for our future. Would Alvin be able to continue with his studies? Would Wendy need special education facilities? How would our eldest daughter react to having a sister with special needs?

It took all our strength to cope with the immediate situation. We decided we would deal with these questions as we came to them.

For days after the operation, Wendy’s head had been swathed in bandages. Arriving in the ward one morning, I met with the nursing sister, who walked over to Wendy’s cot with me without saying a word about what I was about to see. My baby was lying there with her head uncovered and it looked larger than normal. A huge horseshoe scar with black stitching ran behind her ear and surrounded a lump.

‘What is that?’ I asked the sister.

‘That’s a shunt and it’s not for you to play with,’ she told me.

That is all the information I was given.

Later that day, when I quizzed the neurosurgeon about the shunt and its function, he drew a diagram to show how the shunt would drain excess water from the centre of the brain, in place of the ventricles, which were not there. Then he said simply, ‘It’s just plumbing, really.’

I desperately wanted to understand what had happened to Wendy. I scoured all the sources I could for information, but I didn’t get anywhere. Our neurosurgeon said I could ask any questions about the illness, but I simply didn’t know what to ask.

No one in our family or circle of friends had ever heard of hydrocephalus, or as it was more commonly known, ‘water on the brain’. And in those days, children born with a disability, or who had any form of a mental condition, particularly one that was considered unsightly, were kept hidden from the public.

Many such children were passed over to institutions to be cared for. Often parents were advised to ‘forget’ their child and go on to have another baby as soon as possible.

Desperately searching for information, I finally went to the Encyclopaedia Britannica. There I found reference to hydrocephalus with the notation alongside: ‘See: monsters.’

During our baby girl’s illness, I came to realise that many people working in the medical professions didn’t believe it was helpful for parents to ‘know too much’ about their child’s condition.

What we experienced in trying to gain information with doctors and nurses was not an isolated experience. I met other parents who told me they could not find any information that would explain their child’s illness or help them understand what it was. Their questions to the medical staff were often left unanswered. Often they asked the wrong people, who were unable to give them any information.

I certainly felt that more needed to be

Reviews for Where Angels Fear to Tread

[dokfintong · Rating: 4 out of 5 stars]

Before you set your TARDIS to Regency London (roughly 1714 to 1830), take an hour or so and peruse this helpful little language guide. Although more genteel lexicons can be found explicating the language of Jane Austin or Georgette Heyer, Mr. Hart concentrates on the seamier side of town and the vocabulary a gentleman might need if he arrives without any Balsam in his pockets. Depending on our traveler's inherent skills, he will need to seek out a Flash Crib and Cut The Bene Winds so that he can avoid a Culp and offer his services to the right sort of Queer Cove. This book will be of help. It's fun to read too.I received a review copy of "Cant - A Gentleman's Guide to the Language of Rogues in Georgian London" by Stephen Hart through LibraryThing.com.

[jaiw-1 · Rating: 5 out of 5 stars]

I loved the "Digressions" in this book. As a genealogist and anglophile I enjoy knowing where both the gentlemen and the ruffians might be found, primarily in Georgian London, and what their slang could have been. Little historic tidbits litter the Digressions, like Sir Hans Sloane introducing Milk Chocolate in the 18th century. Some expressions have changed drastically over the centuries. A "window peeper" use to mean a "collector of window tax". A distant "tallow chandler" ancestor might have been called a "maggot boiler". Some of the crimes seem bazaar but make sense upon reflection, such as the "black spice racket" which is robbing chimney sweeps of their soot bag. This is the kind of book you pick up to read a few pages and have a chuckle or learn something unexpected. And then pick up again.

[gbcmars · Rating: 4 out of 5 stars]

Very interesting, and thorough. This is resource material, not a history or biography, and should be useful not only to those studying Georgian London, but also anyone who wants to sprinkle some unusual verbiage in their fiction - I can see some very useful words for the science fiction and horror fields.

[cathygeha · Rating: 4 out of 5 stars]

If you are considering time travel to Georgian England and plan to spend time with rogues and rapscallions then this is a book worth packing to take along with you. Not only does it have lists of words used during that time period and what they correlate with today but it also provides some interesting tidbits on where to eat, gamble, attend fights of various types, punishment, jails, religion and consorting with those that are paid for their hospitality. This is a fun book and resource to keep on hand while reading Georgian period novels.