How I made a decision for my son at the ‘cusp of life’

When I was admitted to hospital in labour at exactly 23 weeks in November 2011, I was shocked to hear the official line stated by doctors: they would not actively encourage resuscitation of babies born before 24 weeks of completed gestation.

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The reason, they said, was because of the burden of suffering for those babies was often far greater than their hope of attaining an acceptable quality of life.

Like the people reading ‘miracle’ magazine stories, I’d somehow internalised a perception that although having a premature baby could be stressful, risky and meant a long stay in hospital, it would all somehow work out in the end. 

During the crucial conversation about the potential outcomes of resuscitation and intensive intervention with a senior neonatologist I’d never met before – which would change the course of our lives, and decide the fate of our son’s – I could barely hear myself think.

Nor could I really feel anything except for the blood rushing frantically through my head and the adrenaline causing my whole body to violently shake.

The birthing suite, in the midst of painful contractions, surrounded by concerned faces but somehow still so terribly, terribly alone, is not a place you want to find yourself.

Not when you’re trying to understand mathematical odds like a measured and methodical gambler – let alone trying to ascertain your core beliefs about what kind or quality of life you believe is worth living. But there we were being asked to formalise what was at that time still quite hypothetical decisions about whether to resuscitate our baby should they be unable to stall my contractions and he be born that day. 

Every parent’s instinct is to fight for the life of their child – and there’s no doubt it was ours, too.

But we somehow had to find the ability to ask ourselves one big question we felt very ill-equipped and unwilling to answer: at what price – to Max, and to us – is life?

There were no doctors, no intimidating equipment, bright lights or loud noises. Max was delivered into our arms by our beautiful midwife lovingly, carefully, but silently except for the one big breath he tried to take – more of a gasp, really – the sound of which I don’t believe will ever leave me.

At that moment, unable to imagine a life with a severely disabled child, and with little certainty as to what kinds of supports, interventions and treatments might be available to ease his suffering should this be his fate, we somehow found the words to tell the neonatologist.

We wanted to choose the path that our gut told us would prevent suffering to his tiny little body. 

I recall very little of that conversation except that I felt strangely detached from it, as if I were watching it play out with actors on a stage. I obviously appeared much more rational and measured than I really was because the doctors took our words away with them as evidence of our true wishes and didn’t raise the issue again.

For me to say that we made a ‘decision’ in that instant not to resuscitate our baby, however, drastically misrepresents the immense strain and shock under which this life-changing and irreversible choice was made.

A decision implies that a person has rationally thought through the consequences of their act, looked at things from both sides of the equation and reached a consensus.

I’m not sure we did any of that. We had no time. We had little information. We didn’t understand. We were so scared. 

And so, when our baby boy was born just a few hours later no one intervened.

There were no doctors, no intimidating equipment, bright lights or loud noises. Max was delivered into our arms by our beautiful midwife lovingly, carefully, but silently except for the one big breath he tried to take – more of a gasp, really – the sound of which I don’t believe will ever leave me.

Max was warm, and safe and cradled in our arms for the whole of his life and we take immense comfort from the fact that he never knew suffering.

 

It was the most beautiful moment of my life as I marvelled at my darling baby boy’s sheer perfection and it took some hours for me to comprehend that he was dead, and for the crushing realisation to set in that he would now never have the chance to prove those grim statistics wrong. 

What I did not comprehend was how it would feel to watch Max die.

Or to have to leave him behind in the hospital the next day as we walked, shell-shocked, to our car, and back home where we would have to close the door to the bedroom we were in the midst of preparing for him and instead spend the afternoon making funeral arrangements. 

I believe that on the balance of probabilities given to us on the day Max was born, we did the right thing by our baby and for our family.

Max was warm, and safe and cradled in our arms for the whole of his life and we take immense comfort from the fact that he never knew suffering.

But I also think it is normal for doubts, like the ones I still experience intermittently, to surface in the face of stories that counter ours. 

‘Edge of Life’ will be hard to watch – but it is important that we do.

We must watch and hear the stories of babies and their families whose stories are complex and challenging in order to paint a more accurate, sensitive picture of the reality of what it is like to give birth to a baby at the very ‘cusp of life’.

Catch Insight at 8.30PM on Tuesday on SBS or live stream at 杭州桑拿,sbs杭州桑拿会所,杭州桑拿网,/insight/live

Glenn Lazarus threatens prime minister with ‘grapple tackle’

Anti-coal seam gas protesters travelled from around the country to rally outside Prime Minister Tony Abbott’s electorate office in Sydney on Tuesday.

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The small group of demonstrators handed over a petition of 9,000 signatures, demanding better protection against the environmental and health impacts of CSG mining.

Independent Senator Glenn Lazarus led the charge, urging Mr Abbott to introduce laws that would give land owners the right to block mining companies from drilling on their property.

“The residents and the people living on and in these properties are going through sheer hell,” Senator Lazarus said.

The former rugby league star said he was so desperate to help the families, he was prepared to pull out a few moves from his playing days.

“I am prepared to squirrel grip the Prime Minister,” he said.

“If that doesn’t work I’ve got other things up my sleeve like the grapple tackle, the chicken wing, the crusher tackle. If that doesn’t work I’m prepared to use the Hopoate tactics.”

The coal seam gas industry disputes the claim that CSG extraction causes negative health impacts, citing a Queensland government report which could not draw a clear link.

Narelle Nothdurft flew from Queensland to attend the protest.

The mother of 11 lives near mining hot-spot Chinchilla and since buying the home in 2003, she’s seen 26 wells installed on and around her property against her will.

Ms Nothdurft said although she’s suffering terrible depression and doesn’t normally like talking in front of people, she felt compelled to front today’s protest.

She told the crowd about how her family had started getting sick since the wells were put in.

“They’re all so sick with headaches, a few of them with nosebleeds so I’m here because we were not allowed to say no to this stuff,” she said.

She said that’s on top of the “horrendous” noise of the wells, the vibrations cause her windows and bed to shake and there was dust.

“We have 32 times the (normal) amount of lead in our rainwater tank, we have 42 times the amount of aluminium in our tank,” she said.

Danielle Hodges from Camden, on the outskirts of Sydney, has also seen her family suffer since moving to the area.

A CSG well is located only 400 metres from her home, which is located in a residential area.

Ms Hodges said the emissions cause her son to suffer terrible nosebleeds, sometimes at night.

“I walked into the bathroom and slipped on the blood from a nose bleed,” she said.

“There was that much blood on the floor there was a puddle.”

The petition handed to the Prime Minister calls for three main things:

Health Impact Assessments and baseline monitoring before coal, coal seam gas and other gas developments are approvedExclusion zones near residential areasA right for land owners to say no to mining companies who want to put gas wells or coal mines on their property

When asked about CSG over the weekend, Mr Abbott said he acknowledged concerns.

“I want to assure people who are concerned that this Government would never, ever allow anything that we think threatens the long-term viability of our agricultural sector,” he said.

“Prime agricultural land is just about this country’s greatest natural asset and it can never, ever be compromised.”

Mr Abbott said that the Chief Scientist of New South Wales did a “very comprehensive report” which came out about a year ago.

“That certainly said that if done properly, coal seam gas extraction can and should go ahead,” he said.

“That’s the point – if it’s going to happen it’s got to be done properly and I would certainly urge state governments to make sure that there are the highest possible environmental standards applied.”

The NSW Government said that since coming to power, it’s worked hard to address concerns about CSG.

“Under the NSW Gas Plan, which we released in November 2014, we have reduced the footprint of CSG across NSW from 60 per cent down to 9 per cent,” a spokesman said.

Last year a number of gas companies including Santos and AGL signed the Agreed Principles of Land Access along with landholder representatives NSW Farmers, Cotton Australia and the NSW Irrigators Council.

As part of the agreement, gas companies confirmed they will respect the landholder’s wishes and not enter onto a Landholder’s property to conduct drilling operations where that landholder has clearly expressed the view that operations on their property would be unwelcome.

The NSW Government said it’s also introduced 2 kilometre exclusion zones to protect residential areas from CSG.

However they could not be applied retrospectively, meaning the well just 400 metres from Ms Hodges home can continue to operate.

NSW toddler’s granddad’s bravery praised

A grandfather who narrowly missed being hit by a goods train has been praised for risking his life to save his granddaughter, whose pram had rolled onto railway lines.

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Eighteen-month-old Erleen Sabharwal suffered a bruised forehead and skinned knees when she fell off the platform at Wentworthville station in Sydney’s west on Sunday.

She was rescued by her 62-year-old grandfather who was nearly struck by a train after he jumped onto the lines and handed her back to family.

“Definitely, I’m very proud of him that at that age he jumped down to save the baby,” the girl’s uncle Parminder Singh said.

“It could have been worse if my father hadn’t have jumped or if the train was coming at the same time.”

CCTV footage shows the pram rolling away as the family were buying tickets.

The grandfather, who had travelled from India only days before, had to walk along the tracks to the end of the platform after jumping to the toddler’s aid.

The little girl was released from hospital on the afternoon of the incident.

“God was there to help them out, I’ll just say that,” Mr Singh said.

“She’s running around playing in the house and everything is OK.”

Acting Superintendent Daniel Wiggins said the grandfather, who did not want to be named, had been “brave” and “courageous”.

The incident has prompted warnings for parents to be extra cautious with children around railway stations.

Sydney Trains operations director Tony Eid said similar incidents happened on the network two or three times a year.

He said most Sydney stations had platforms that slanted toward the centre but some unrenovated ones, like Wentworthville, still sloped towards the tracks.

“We ask parents and carers with prams that they always maintain a firm grip, apply the brakes and make sure their child is fastened in the seat belt,” he said.

Mr Eid said Wentworthville Station has been earmarked for renovation.

Overcrowding linked to jail riot

Reviews into the worst prison riot in Victoria’s history cannot ignore how overcrowding helps create “pressure cooker conditions” that lead to violence, a prisoner support service says.

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Staff had to flee Melbourne’s Metropolitan Remand Centre and the prison was locked down when inmates armed with sticks smashed windows, bashed doors and lit fires, causing damage estimated at millions of dollars at the maximum security facility on June 30 and July 1.

The prison was still closed to visitors on Tuesday, a Corrections employee told AAP.

The riots at Ravenhall are believed to have been triggered by a statewide ban on smoking inside prisons.

Three inquiries into the riot are under way, and a prisoner support service says the problem of overcrowding must be investigated to prevent further outbreaks.

Jesuit Social Services says overcrowding has doubled the number of assaults, attempted suicides and cases of self-mutilation it has dealt with in the past six years.

“While it would seem that the smoking ban was the immediately visible trigger … the situation was already a powder keg that will continue to be a serious problem,” JSS chief Julie Edwards said in a statement.

Fights between inmates happen daily while prison officers are assaulted every three days, Ms Edwards said.

“In this context of overcrowding, Victoria has become the state with the most violent prisons in Australia.”

She said the Ravenhall remand centre reached capacity in January with 1005 inmates.

It is unclear how other prisons, which were also locked down at the time, remain affected by the smoking ban and the riot at Ravenhall.

Corrections Victoria said the Metropolitan Remand Centre remains “largely in lockdown”.

Most prisons are operating as normal but some prisoners are still subject to additional restrictions.

“There have been no major incidents at MRC or other prisons that could be attributed directly to the original disturbance,” a representative said in a statement.

Warning about platform slopes after baby rolls onto train tracks

A Sydney railway platform where a baby narrowly escaped disaster on Sunday is one of many in the city that slopes toward the tracks.

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CCTV footage captured the moment when the baby girl’s pram rolled onto the tracks while her family were looking in the other direction.

The baby girl’s grandfather then rushed after the stroller and jumped onto the tracks, narrowly missing an oncoming freight train.

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Today, the girl’s uncle, Parminder Singh, said the experience had been tough on the family.

“When I saw the video it was quite shocking. But I just don’t talk to them about it because it’s quite stressing for everyone.”

The platform – like many others at older train stations – slope towards the track, for drainage.

Tony Eid of Sydney Trains said it was due for an upgrade.

“This station is one of those stations where when it gets an upgrade it will slope towards the middle,”  he said.

Sydney Trains spends around $5 million per year on platform surface improvements, which reduces the slope of around ten platforms every year. 

All new or significantly upgraded stations are now built with platforms that slope toward the centre.

There have also been near misses in other states. In 2009, a pram rolled onto tracks off a Melbourne platform and was hit by a train. Miraculously, the baby was uninjured.

While most new train stations now slope away from tracks, Acting Superintendent Daniel Wiggins, of NSW Police, said the message to parents was clear.

“Please always maintain a firm grip and apply the brakes,” he said.