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Caleb has autism, needs dialysis and a new kidney but Canberra Hospital says it can’t help him

Ian Bushnell 8 January 2019 32

Leanne Browning with her son Caleb, whose sole kidney is failing rapidly. Photos: George Tsotsos.

A Canberra teenager with one failing kidney is facing a death sentence without dialysis and an eventual transplant but according to his mother, doctors at Canberra Hospital have told him he can’t be treated because of his autism.

Palmerston mother and full-time carer Leanne Browning says she was told on Christmas Eve that her 17-year-old son Caleb, who also has ADHD, only had a few months to live but did not fit the criteria for dialysis because he could not sit still enough and sedation would further damage his kidney.

And without dialysis, he cannot be put on the transplant list.

Ms Browning says Caleb, who attends The Woden School, was born with only one part-functioning kidney but it was damaged by exploratory surgery in 2015 at Canberra Hospital, and last year it began to deteriorate rapidly.

Her decision to agree to the kidney surgery has haunted Ms Browning ever since but she says at the time the hospital gave her no choice.

It is the latest episode in what has been a fractious relationship with Canberra Hospital, where Caleb was born six weeks premature with a range of medical issues, including a dysplastic kidney, a kidney with only a third function, and immature lungs.

He spent the first 16 months of his life in hospital, in Canberra and Sydney, and finally returned home with a long-term feeding tube because he had also suffered reflux and could not swallow.

Although Caleb’s kidney was supposed to have been monitored over the years, mother and son lost touch with Canberra Hospital until 2015 when he needed a replacement feeding tube.

By this time, Caleb had learnt to eat in small portions and when the replacement tube failed to work properly, causing food and corrosive stomach acid to leak, Ms Browning demanded the hospital remove the tube, convinced that he would be able to cope without it.

She says the hospital finally agreed but only if doctors could now examine the kidney, which came to their attention in the case notes.

“I was really angry and I was saying to them, for 12 years you did nothing about this kidney. I’ve come in over his tube burning him and now you’re telling me unless I let you interfere with it basically you won’t take his tube out,” Ms Browning said.

The surgery did not go well, and it took another two operations before Caleb could leave hospital after three months.

“Caleb came out of it and was screaming and screaming over the pain in his back. He couldn’t urinate, and they realised that something had gone wrong and they had to go back in,” Ms Browning said.

She said the ureteroscope (fiberoptic viewing tube) had damaged the kidney and it now required a stent, but a fungal infection around the stent meant more surgery to replace it.

With the feeding tube gone, Caleb was eating normally and gained weight but Ms Browning had been told there would be slow deterioration in the kidney.

By the second half of 2018, this deterioration was accelerating and Caleb began to lose his appetite and weight, and become fatigued and lethargic.

Ms Browning was told his treatment options were limited, culminating in the Christmas Eve appointment, which left her stunned.

For Caleb, the situation is hard to comprehend but he is aware of it. His mother says he has told her, “I don’t want to die.”

 Caleb is aware of his situation.

Caleb is aware of his situation.

Ms Browning wishes she had never agreed to the exploratory surgery, which the original specialist in Sydney had advised against.

“They should never have touched it (the kidney), they were told by the specialist in Sydney not to touch it. They blackmailed me by saying they wouldn’t remove the tube unless I agreed to let them fiddle with his kidney,” she said.

“I’m just so angry that I signed the paperwork to start with. I forced my way into the hospital to try to get my son’s tube fixed, and now look at the state he’s in.”

Caleb has more appointments with renal specialists in Canberra and at Westmead Hospital in Sydney but without dialysis and a transplant, the future looks grim.

Canberra Health Services said in a statement that it was unable to comment on the individual treatment of its patients as to do so would breach patient confidentiality.

“We understand that dealing with the illness of a close relative can be incredibly difficult and traumatic,” it said. “All clinical decisions made by staff at Canberra Health Services are done so in the best interests of the patient.”

 


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32 Responses to Caleb has autism, needs dialysis and a new kidney but Canberra Hospital says it can’t help him
Catherine Ford Catherine Ford 1:21 pm 10 Jan 19

The article says the remaining kidney should have been monitored over the years, but wasn't. I wonder how much this contributed to the eventual outcome...

    Andrea Kerr Andrea Kerr 2:18 pm 10 Jan 19

    Exactly what I was thinking. It’s a sad situation although could most likely have been prevented through proper long term care and monitoring

Stephen Alder Stephen Alder 6:23 pm 09 Jan 19

So sorry about this terrible and continuing problem for Celeb. My prayers are with you.

Colette Robinson Colette Robinson 1:46 pm 09 Jan 19

Can’t or won’t? Would they treat him if he was allistic? No excuse given will convince me that this not blatant disability discrimination and Eugenics.

Sneha Sridharan Sneha Sridharan 11:38 am 09 Jan 19

Prayers for you and your son, hope some surgeon in Australia will come fwd and help ur kid

Narelle Leonard Narelle Leonard 10:06 am 09 Jan 19

So sorry to hear this Leanne. Love & warm thoughts to you and Caleb.

Ranjeet Sahi Ranjeet Sahi 9:46 am 09 Jan 19

Leanne and Caleb so sorry to hear the terrible news.

Belzie8 9:39 am 09 Jan 19

So many holes in the story she lost contact with canberra hospital over the years and didn't see them until 2015 (from when he was a baby? And he wasn't monitored over that time, that's just asking for disaster. I would love to hear canberra hospitals side. Could he not be donated a kidney from family as opposed to going on the waiting list if he can't get dialysis. The way this story has been told sounds really dodgy. We have had 3 of our own incidents, major life threatening ones with TCH, but this just doesn't make sense

Karna O'Dea Karna O'Dea 11:31 pm 08 Jan 19

Sounds like of arse covering from Canberra health services

Calvary had a dead patient in A&E last weekend and now this. Why did the doctors feel the need to poke around his sole kidney when the sydney specialist told them not to

    Andrea Kerr Andrea Kerr 9:08 am 09 Jan 19

    Not sure the link between the two cases. I doubt they just poked around. The kidney required a stent which if you understand anything about how the kidney works, would be required to keep it functioning. If he hadn’t had that surgery chances are kidney failure would have occurred sooner.

May Mac May Mac 11:09 pm 08 Jan 19

"did not fit the criteria for dialysis because he could not sit still enough"

I have no doubt that is a huge challenge but it's terrible if no-one is trying to find some sort of solution. I have read of kids with autism who struggle with having their hair cut but when a hairdresser with some sort of special skill in that regard is found it can be managed. Of course dialysis is a longer more complicated procedure, but it's also more important. I don't know, calming music, a distracting activity, hypnosis . . isn't anyone trying to think creatively and holistically?

    Nina O'Connell Nina O'Connell 8:01 am 09 Jan 19

    May Mac sedation?

    Jewel Jefferson Jewel Jefferson 10:48 am 09 Jan 19

    Nina O'Connell think of the effect of sedating him for 8 hours, 3 times a week, every week 😥

    Nina O'Connell Nina O'Connell 10:50 am 09 Jan 19

    Julia Heffernan I know.. But could he have some mild sedation so it might be possible to do? Better than no dialysis :(

    Prue McKay Prue McKay 4:39 pm 09 Jan 19

    Nina O'Connell Article says he can’t have sedation

    Nina O'Connell Nina O'Connell 7:51 pm 09 Jan 19

    Prue McKay oh I missed that

Maya123 10:12 pm 08 Jan 19

There was a segment on tonight's 7.30 about growing kidney tissue. Very interesting, and hopeful.

Andrea Kerr Andrea Kerr 9:28 pm 08 Jan 19

Why was he not monitored for so long? Perhaps with regular medical treatment and advice it may not have come to this. I am sure seeking a second or even third opinion isn’t impossible.

    Neenie Baines Neenie Baines 10:16 pm 08 Jan 19

    Yes. She ‘lost touch with canberra hospital’’ .. All very sad, but medical professionals don’t deliberately damage someone. I had good care as a renal patient last year, multiple surgeries. All the specialists I dealt with were caring and great. This sounds like a very complicated case. I really hope they can get dialysis and a transplant 😞

Katy Skinner Katy Skinner 9:15 pm 08 Jan 19

Kidneys for transplant are a very difficult issue -there are huge complexities not just with matching from a limited number of donations, and then undergoing long surgery, but with the anti-rejection regime that follows. Not every body can undergo this, but all over Australia kidney patients are treated with the highest level of care and coordination with priorities of course taking into account the factors affecting rejection, physical and mental survival. Different rules apply overseas, but ethics are also different.

Kriso Hadskini Kriso Hadskini 8:35 pm 08 Jan 19

...And that is why I travel to Sydney for any specialist appointments for my family.. So sorry for the attitude of the Drs. It is amazing how often mothers are disregarded and overruled.

LJ Tas LJ Tas 8:34 pm 08 Jan 19

https://www2.medicareaustralia.gov.au/pext/registerAodr/Pages/DonorRegistration.jsp

If you're not registered, sign up today!

Tracy Gorman Tracy Gorman 8:00 pm 08 Jan 19

Leanne I’m so sorry it got to this. I remember when this happened, Jessica was there at the same time. Much love to you and Caleb

Samantha Sideris Samantha Sideris 7:30 pm 08 Jan 19

Queanbeyan have a lovely Renal unit.. any chance he could have his treatment there?

Cathie Clayton Cathie Clayton 7:24 pm 08 Jan 19

Philip Clayton surely there is something that can be done? This is awful!

Rhonda Meiksa Rhonda Meiksa 7:16 pm 08 Jan 19

This is disgusting. Surely some sort of help can be given considering from what was said the damage was caused in hospital. Time to take the health minister to task.

Our hospital system is the worst in the country.

Michele Gorman Michele Gorman 6:55 pm 08 Jan 19

I am guessing his Mum isn't compatible to donate hers. That's just not fair for that poor family.

Georgie Vlahos Georgie Vlahos 6:55 pm 08 Jan 19

I’m so sorry to hear this 😞 i haven’t seen you both for a while at big w. I truely hope they can find something to help him really soon!!

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