Sunday Insight: Insupportable grief

By Chloe Johnson

Rewi Hohepa-Penny with mum Charlene.
Photo / Michael Craig
Rewi Hohepa-Penny with mum Charlene. Photo / Michael Craig

Carole Povey sits by her baby as he lies critically injured in a hospital incubator.

Life lines, linked to beeping machines, are inserted into his tiny body in a desperate attempt to save him. Carole, a pregnant mum of three, doesn't leave his side.

The Starship paediatric intensive care unit is cold and bleak. It smells like cleaning agents. Busy doctors and nurses rush around the building checking on dozens of sick and injured children.

It has been eight days since 15-month-old Paikea Povey was air-lifted to the hospital after a horrific car smash on State Highway 16, just half an hour away from their home in Helensville.

Paikea hasn't opened his eyes but he is showing signs of improvement, Carole says. His bowel is working, he is breathing on his own and he is responding to pain and touch. But doctors want to turn off his life support, she says.

Carole is a strong woman but today she is faced with a decision that crushes her, one that no mother can be prepared for.

The following days are spent questioning doctors about Paikea's quality of life, what rights they have as parents and how long they have to decide his fate. She scrutinises their answers, which are all leaning towards turning off the switch.

But Carole, and her husband Darren, decide Paikea needs more time to heal and his life support should be kept on.

"I don't care if I have to look after him for the rest of my life, if he has a fighting chance, if he has a 1 per cent chance, and he did, he absolutely has the chance of survival," Carole says.

Her argument is not strong enough to convince doctors and, suddenly, she finds herself fighting a lonely battle for her son's life.

She doesn't yet know it, but it's the same fight her cousin Charlene Hohepa has gone through to save the lives of two of her children.

When a parent is faced with the traumatic decision of turning off their child's life support it is often clouded by emotions of grief and frustration. A doctor will make a decision based on ethics, law and - unavoidably - money.

So when doctors and parents clash, who makes the final decision?

Barrister Gaeline Phipps, who specialises in medical law, says if parents and doctors disagree then the child's life will lie in the hands of the High Court: "They will take into account the doctors' evidence, views from an ethical committee, the views of the guardians and clinical evidence."

Doctors don't always win the legal battle. Toa Hohepa-Penney is the living, laughing evidence of that.

Six years ago, Charlene Hohepa watched her critically ill son fight for his life.
Two-year-old Toa Hohepa-Penney woke one morning with a headache, a high fever and a runny nose. He was taken to the doctor in Mitimiti, Northland, and sent home with antibiotics.

But his flu-like symptoms worsened throughout the night and a second doctor's visit revealed he had a viral infection. Toa was sent home again, with another course of antibiotics.

At 10.30am the next morning, he flopped out of bed and fell to the floor, unconscious. Charlene rushed him to Kaitaia Hospital where he was put on life support in an unstable state.

He was then sent to Starship's neurological ward after MRI scans at Whangarei Hospital revealed the left side of his brain had shut down. He was placed in an isolation room and connected to a life support machine.

Charlene couldn't bear the thought of her baby dying alone so she fought the doctors and demanded entry into the isolation ward.

"I stood next to baby. I got in trouble that night with the charge nurse, but
I didn't want to leave him there."

Six weeks later, doctors gave Charlene the devastating news that Toa was unlikely to recover. His brain has been invaded by the rare disease acute disseminated encephalomyelitis (ADEM), often the result of a viral infection.

"His head was swollen," Charlene says. "We asked if we could give him a chance to heal but they wanted to let him go because he had made no progress and had a poor chance of recovering. They said he'd be a vegetable."

Charlene consulted a lawyer. They prepared to go to court to keep her baby alive. But, it did not go that far: the hospital settled outside court. Toa's life support was kept on.

Two months later, as Charlene lay beside Toa, the toddler's eyes opened. They looked around the room before settling on Charlene - and Toa smiled.

"He was looking at me, smiling, and I said, 'look Daddy's here', and more smiles. It was an awesome experience."

Toa had lock-jaw and the right side of his body was paralysed. He underwent physiotherapy and treatment from a massage therapist for months and gradually got the feeling back in his body. "He would grab his right side and drag them saying 'work, work'."

Toa, now 8, bounces into the house after a day at school. He says hello then sprints off to play with his siblings.

"He's one of my strongest children," Charlene says. "He is certainly the hungriest of my children."

Incredibly, Toa remembers his parents fighting with doctors as he lay in a coma."We had a meeting with a specialist a year later. Toa said, 'you told my mum and dad to take me home because I'm not going to make it' and I was saying, 'I'm here, I'm here' but I was locked inside'. It touched us all," says Charlene.

On July 10 last year, Charlene gave birth to her seventh child, Rewi Hohepa-Penney.
At four months old, Rewi fell ill one night with severe diarrhoea, a runny nose and a fever. By the morning the left side of his face began to twitch.

Charlene raced him to Middle-more Hospital but by the time they arrived he was unconscious. Doctors drilled a hole in his leg and filled it with antibiotics in a hasty
attempt to save his life. It worked.

They put Rewi on life support but at 8pm his body began to shake and he had his most aggressive seizure. He was sent to Starship Hospital where he was diagnosed with pneumococcal meningitis and severe brain injury.

Like his brother, he was placed in an isolation room. Charlene argued with doctors, but this time they were adamant: she was not allowed in. Peering through a window she watched as Rewi went into cardiac arrest.

"We just saw the machine go flatline and I was standing there praying," Charlene says.

"He had a heart attack, he was gone for four minutes. They brought him back to life. I was hysterical."

Rewi's condition deteriorated. Days after his admission, doctors said the damage to his brain was so extensive he would never breathe on his own. They wanted to turn off life support.

"They said he will never open his eyes, he will be a vegetable and if he contracted pneumonia he would die. I broke down, his dad broke down, I couldn't even talk."

The next few days were difficult for Charlene, who was again faced with the decision about a son's life support. This time, she was alone. Her partner and family agreed with doctors.

"I prayed to God to give me advice - should I let him go or fight like we did for Toa? You can't forget faith and hope."

Yet, again, something inside told her to continue the fight for his life. With a confident and clear mind, Charlene stormed into the intensive care unit and stopped the nurses administering morphine. She picked up Rewi and cuddled him for the first time since he was admitted to hospital.

She believed the morphine was turning him into a zombie, preventing him from fighting on his own. The doctors listened, she said, then called security on her.

The next morning, Rewi was breathing on his own. On a mission to save her son, she started bossing the nurses around, demanding they stop feeding him through a direct tube and through the machine's drip feeder. She also stopped them from suctioning gunk from his lungs because it had already been done that day.

With the help and hope of his mum, Rewi was able to recover sufficiently to be transferred to a children's ward.Charlene sang to Rewi as they waited to be transferred.

Nurses came in accompanied by security. They told Charlene they were taking her to Te Whetu Tawera mental health hospital. She was accused of fighting the nurses and being disruptive. Charlene denied it, saying she was just doing what any mother would do. She was assessed by a psychiatrist, who confirmed she was a mentally-fit mother, and released after two days.

Upset, Charlene transferred Rewi to Waikato Hospital. She says the doctors discovered he had been suffering from pneumonia and had an infection on the left side of his brain. Both were curable through antibiotics, which were given to him immediately. Three weeks later, Charlene took Rewi home.

Today, she tickles him on his tummy and smothers him with kisses in their lounge. His floppy head leans towards her for more kisses and his hands come together like he is trying to clap.

The left side of his brain is permanently damaged, but Charlene says, "He is alive and breathing. He is a real miracle baby."

Univeristy of Auckland lecturer in medical ethics Monique Jonas says there are several factors that parents and doctors should consider when determining whether a desperately ill child can be kept alive.

But the most important is the best interest for the child - while on life support and in the future. "If a child did survive, what kind of condition would their life be? Would they be able to meet life goals you might anticipate for a child? Or would they have a life that is minimally worth living?"

Jonas says the child's immediate welfare, the child's dignity, the cost to keep them alive and the precedent that is being set are also important factors.

"It is incredibly expensive to keep a child on life support , there is no doubt about that. It is hundreds of thousands. While one child is on life support that is one [a machine] that isn't available for a child who may have better prospects. All of that must be considered in decision-making."

She says parent's' views must be taken into account. "You can't expect parents who are grieving for their child to care about how resources are distributed, but that is one of the reasons you can't allow parents to make all the decisions and have authority."

Auckland District health board spokesman Mark Fenwick said decisions about life support were made on a strictly case by case basis.

"These are highly sensitive decisions made in close consultation with families and taking into account a number of factors, including clinical assessments and the patient's outlook. We understand that these are highly stressful and emotional periods for the people involved and we are committed to working sensitively and inclusively with families at all times."

The same month that Rewi returned home, Starship doctors give the Poveys the results of Paikea's secondary CT scan. It is not good news. There are further complications with his brain that were not initially detected because of a growing blood clot.

Despite this, Carole hangs her hope on Paikea's slight improvements and continues to fight for his life. "He has that possibility of life, he isn't brain dead, he could survive, absolutely," Carole says.

The next day, about 50 whanau members gather around Paikea's bed. With his brother Asha lying by his side, they have an emotional service that ends in a prayer. It's not a service to say goodbye, Carole says, it's a service to bring good energy into the room.
But an hour later, doctors tell Carole and Darren that the life support will be turned off in a few hours.

"They said we have given him long enough and it is time to give him the dignity he deserves. They said we are taking it out of your hands."

Carole says she refused to give them permission or sign a consent form. But despite being angry, confused and in shock, she knows there is nothing more she can do to save him.

She knows she has lost the fight.

At 10am doctors start removing the tubes that are keeping him alive.

Carole holds her baby tightly, crying as she watches his breath get shallower.

She doesn't let him go for five hours until he takes his final breath around 3pm.

"I remember him taking his last breath, it was like a gasp and then he stopped breathing," she says, crying. "It was horrible."

Carole's baby has gone and she is left wondering: whose decision was it?

Paikea Povey died at Starship Hospital on January 22. His father Darren Povey, aged 44, pleaded guilty to careless use of a motor vehicle causing death. He had been driving the family home from a tangi when he fell asleep at the wheel. In July, he was disqualified from driving for six months.

Making the tough call

* Doctors and guardians have a duty to provide a child with the necessities of life. If the necessities of life are not provided it can be an offence, unless there is a lawful excuse.
* If doctors judge the child cannot ever recover sufficiently to have a life whose benefits outweigh the pain and discomfort, they may advise the guardians that they plan to disconnect life support.
* If the guardians do not agree, either the doctors or the guardians can seek a court order.
* The court must make a decision based on the child's best interest.
* The court will weigh up whether life support will prolong the child's suffering, pain and discomfort or give the child a chance at a life worth living.

- Herald on Sunday

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