Putting children at risk: The story of Liam and our healthcare system

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Paediatric surgeon Professor Paddy Dewan relates the saga of yet another victim of our failing healthcare system.

THE NATIONAL health regulator (AHPRA) was presented with 98 scenarios in 2004, a submission that was intended to raise concerns about the pattern of behavior that was highlighted in the last two presentations in Independent Australia (here and here), namely dubious clinical decision-making — more importantly, disregard for families and their children.

The following story is unbelievable, but true and was an additional case of concern; one of more than 25 cases that pertained to one surgeon’s under performance in the 2004 submission to AHPRA.  When I presented the story to a group of Australian surgeons (pretending I was responsible for the initial poor care), they were like a pack of hungry wolves but when I revealed I was not involved in the ridiculous decision-making, without naming the perpetrators, the group was instantaneously transformed into a silent, spineless, disappointing, unethical, conspiratorial collective.

The story took place in 2005 and is of a boy who had blocked kidneys — a finding on ultrasounds before birth. The prenatal pictures lead to the decision that he be delivered at 35 weeks gestation. Over the next 90 days he had several ultrasounds, 2 studies involving putting a catheter into his bladder, two general anaesthetics, including the insertion of tubes between the bladder and the kidneys and three tests looking at his kidney function and drainage.

Part two of this story is the response, or lack of it, from the national health regulator (AHPRA) to the contention of the parents that the care had been inadequate and one practitioner in particular had been unprofessional and rude.

Just imagine, gentlemen readers, your wife is pregnant with your second child and you are already you are on edge, let alone you discover that the boy has dilated kidneys (eventually you learn the term hydronephrosis).

The family of the boy concerned recalled that:

 “On Tuesday 28 June, we met the urologist for the first time. The first question that he asked us was whether our child was a boy or a girl. We said we were unsure and that we were told that this was not an issue.  He said, ‘of course it is an issue’. We asked if the pre-natal ultrasounds would help him, and after glancing at them he discarded them and said he was never very good at reading ultrasounds anyway. We proceeded to ask a series of questions, all of which he was hesitant to answer. We asked if kidney problems were a common occurrence in newborns to which he informed us that 1 in 200 children were born with something wrong with a kidney. We tried to find comfort in these statistics only to be shot down and told that that had nothing to do with us, that our child had a problem with both kidneys and that was rare and it was “severe”. We were then informed by the urologist that he would not enter into the debate as to when the child should be delivered but that he needed to be contacted as soon as he/she was born”.

The excerpts above and to follow are from a letter to the Victorian Medical Board from the parents.

The family recollection of that first visit was:

 “He said that we had 24 hours to get the baby to the hospital and that if it went into renal failure, not to bother. He explained that the baby would need to go through a series of tests possibly on day two of life and that an operation would take place on day three.”

Note the expectation of timing of an operation on day 3. So far, I would be happy with the advice and decision-making, provided the detailed examination of the ultrasound scans was consistent with the plan.

Not surprisingly, the parents agreed that

“The urologist’s manner was appalling, but were under the misguided impression that he was the best in his field and that we were better off saying nothing for the sake of our unborn child”.

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On Tuesday 9 August, Liam was delivered by caesarean section to very anxious but delighted parents. 

Liam’s dad, a big guy, was used to the rough and tumble of playing football, so through these events took a deep breath, toughened up, and dealt with it, just as he would on the football field. But there was much more to come, much of which I would argue equates to a form of assault that would not be tolerated in the game of Australian Rules football; physical assault on the child and emotional assault on the family.

The family had expected transfer in the first 24 hours and operation within the first three days. Ninety days later, a definitive operation had still not occurred, despite the ever-increasing evidence.

As Liam’s mother recorded,

“After delivery, Liam was finally transported by ambulance 54 hours after birth and all that we could think about was our meeting with the urologist and his insistence of immediate transfer of care”.

Even with a delay in transfer, testing did not begin until Friday 12 August, which included an ultrasound and cystogram, the latter involved putting a catheter into the bladder and exposing the child to radiation — an appropriate but significant test and not one that was particularly indicated by the ultrasound. Not a wrong decision, but not a decision based on the best interpretation of all the evidence. 

The ultrasound showed that the decision to deliver early was appropriate and the catheter study of the bladder was essentially normal — confirming it could have been avoided.  Can you image the state of the family when, without good explanation it took another four days before a function and drainage study was performed? Not only delayed, but faulty, because much of the dye had leaked into the skin of the foot, instead of going into the blood stream to then be cleared by the kidneys. BUT the blockage of the kidneys was obvious but obviously not to the treating team.

The parents noted,

“ A junior doctor was very willing to explain the situation, but a combination of stress and lack of sleep left us with more questions than answers. We kept referring back to our initial consultation with the urologist, and wondering where he was through all of this.”

On the 18 August (day 10) the baby was taken to theatre and had a general anaesthetic during which x-rays showed the obstruction of the kidneys! No definitive procedure was undertaken; therefore the child had been put at risk without any prospect of benefit. The decision to perform the procedure was the responsibility of the urologist, who has then INAPPROPRIATELY delegated to a junior and was not in theatre.

“Again we wondered where the urologist was, and if it was normal for a registrar to be performing such a delicate procedure”, recalled the parents.

Ultrasound studies were again performed on 24 August and 20 September, both of which showed the kidneys to be increasingly worse with each study; the left worse than the right. However, the family was transferred back to the maternity hospital — go figure! Notably, the boy had not had any other problem apart from the concern about the kidneys.

The family met with the nephrologist, after the further kidney function and drainage study was performed on the 20 September.

Guess what? The kidneys were again shown to be obstructed but it was not until 6 October that any intervention occurred but as the parents recalled,

“We viewed the images of the Mag 3 (function and drainage) study with the registrar and commented on how the right ureter looked remarkably like the drawing that the urologist had drawn of a PUJ Obstruction (i.e. blocked kidney – the family have learnt the medical language) in our initial consultation with him”.

The procedure went head on 6 October, but no images were kept of radiology (a significant point) that would have been performed during the insertion of double “J” stents. Double “J” stents are slender tubes of plastic that are coiled at each end and are SUPPPOSED to stay across the blockage — one end in the bladder, the other in the kidney. Two anaesthetics and no definitive resolution. A third operation would be a needed to remove the pieces of plastic, whatever happened.

Liam’s mother wrote,

“Much to our delight at the time, Liam had the double “J” stents inserted and we were assured that there was no need for the pyeloplasty” (an operation to fix the blockage of a kidney). 

Ultrasounds on 10 October and 21 October both showed the stents in the kidney, but worse right-sided changes; the left better (because of the stent — the left stent was in the correct position, thus internally by-passing the blockage).

 

Yet another ultrasound was performed on 25 October, with the second episode of the boy having a catheter inserted into his bladder, to study the urological system with the bladder empty. The distension of the right kidney was severe — AGAIN. No further ultrasound was planned until 8 November, which was to be after a further unnecessary dose of radiation in the conduct of a third study that would involve insertion of a catheter.

No one had thought of the prospect of the stent accidently coiling up into the kidney and, therefore, no longer by-passing the blockage. If that explanation was not the cause of the worsening changes (the stent had migrated into the right kidney, which WAS OBVIOUS), the alternative of the stent being blocked was the only other possible conclusion; an explanation that also should result in early intervention.

But the bleeding obvious was not realized — I tried to remain polite then and I am just managing to now. The stent having slipped up into the kidney was so obvious that I was able to suggest the diagnosis on first review of the radiology images! Medicine is not rocket science! The conclusion was easily reached by a thorough review of the radiology.

You can see why I talk of assault, more of which was about to occur. The combination of the prenatal ultrasound, the post natal ultrasound and the function and drainage study in the first week was adequate evidence for surgery on the right kidney and almost enough to justify surgery on the left side.

I left for a www.kindcutsforkids.net visit to Mauritius on Sunday 6 November, having first reviewed the case on the Friday, after a phone call from the family, who had organized a referral.

 

The second catheter insertion x-ray of the bladder and urethra was performed on the following Tuesday and yet another function and drainage study. Both of which were unnecessary. He only needed an ordinary x-ray, which would have shown the stent in the right kidney – there the need for surgery – unblocking the kidney and removing the plastic at the same time was the only reasonable next step.

Things became VERY bizarre after the second bladder x-ray study on the Tuesday, then the function and drainage study on the following day, 9 November, the parents became aware of the stent being only in the kidney, rather than across the narrow blockage, and commented,

“we felt that this explained why Liam had been considerably miserable over the past weeks, often groaning with pain”.

Medicine is not rocket science!

The family was now dealing with a second paediatric urologist at the original institution. To the second urologist they had, “expressed our concerns and asked when the stent would be removed and the pyeloplasty done”. The parents felt that:

“he assured us that the stent needed to (sic) removed as soon as possible, within days, but that there was not going to be a pyeloplasty” (the operation to fix the blockage).

After the tests in early November the family went back to see the second urologist. The family recalled that the urologist

“was unable to satisfactorily answer all our questions and left the office. He returned minutes later with the first urologist”.

My most recent article was about doctors bullying patients!

By this time, I had spoken to the family having seen the investigations of the kidneys, and gave the family all the information they needed to appropriately question others involved in their son’s care. It was clear that Liam should have a pyeloplasty, and I explained why? The outcome of the pyeloplasty was the FURTHER proof they were subsequently provided with.

When the second urologist returned to the room with the first urologist Liam’s parents recorded, “this would be the second and final time we would meet this man.  He entered the room and started explaining that although Liam’s condition was “severe” – he did not feel that is was necessary to do any further testing or procedures, and that Liam would be merely observed to see what would happen. 

Dear reader, please remember Liam had a piece of plastic between his kidney and bladder on the left and a coil of plastic in his right kidney.

The mother asked the first urologist about the need for a pyeloplasty to which he raised his eyebrows and responded “I will try and explain it to you – one more time”. 

He did explain it again – it didn’t seem logical to the family – it wasn’t. 

She then asked what his decision meant for Liam long term, to which he replied gruffly:

 “mothers are always concerned with long term, I am more concerned with the next six months”. 

The parents reflected:

“With that, we left the hospital, disheartened that what seemed so obvious to us, was being dismissed as a bad idea.  We could not understand the course of events that had taken place. We could not understand the rude and dismissive manner in which the urologist addressed us. We could not understand how they could look at our baby, knowing what he had been through, and send us home. It seemed all a bit too hard”. 

To reiterate, remember Liam had a piece of plastic between his kidney and bladder on the left and a coil of plastic in his right kidney. The intention by the treating urologists was to remove the piece of plastic from the right kidney but using a radiologist to stab the kidney and pull it out, a kidney that was shown to be obstructed. That problem was not going to be treated!

I suggested that for the two weeks I was to be away the only appropriate intervention was a pyeloplasty during which the plastic could be removed from the right kidney. If he developed an infection, putting a drain through the skin, into the kidney would be the appropriate solution.

But nothing was going to happen …. the mother noted:  

“We heard nothing from the hospital for the remainder of the week”. 

Eventually contact was made and the family informed that the procedure would take place nine days after confirmation of the displacement of the stent; a stent that had clearly been in the wrong place for weeks and the kidney obviously blocked.

Liam’s mother recalls:

“Again I referred to previous conversations and asked if they would be performing a pyeloplasty. I was again told that this was not necessary” (by the second urologist).

The next part of their documentation of events was to complement me, but to inadvertently insult the Australian healthcare system:

“Professor Dewan seemed to have a better knowledge of Liam’s condition through phone conversations alone, than the urologists had after 15 weeks of constant observation. Professor Dewan gave us a better understanding of Liam’s condition and was not bad-mannered or impolite if we were unsure of something and asked him to clarify it”.

After many long discussions with the family, Liam had an operation on the day the family and I were able to meet, on 21 November. Liam had a pyeloplasty on the right hand side and one on the left hand side the next night.

The removal of the tube from the left resulted in ultrasound changes the next day that clearly supported the previous diagnosis of obstruction on the left, as reported by the mother:

“ Within 4 days he was no longer groaning and actually laughed for the first time.  Within 7 days he was sleeping through the night. This confirmed to me, a mother with no medical background whatsoever, what I had suspected for over a month. This surgery was undoubtedly necessary”. 

It is wonderful to receive complements, it is even better to see the improvement both clinically and radiologically of a child; all of which was further after-the-event evidence of the need for surgery.

The above comments of the parents were also relayed in a letter to the medical board dated 14 March 2006.

 

I wrote to Claire Lethlean, the lawyer for the Medical Practitioners Board of Victoria on 2 March 2006 to clarify the issues of concern with the management of Liam. The parents had made a complaint and felt threatened throughout the process.

In that letter, I outlined the series of events and posed questions worthy of consideration.

I received a response from the medical board in late 2007 – yes 2007 – that intimated that there was to be no real action taken as a result of Liam’s scenario. I wrote on 28 December 2007, laying out the whole sordid saga again and stating:

“The sequence of studies, and the results, in light of the clinical context, indicates that the appropriate care would have been surgery for pelviureteric junction obstruction at a much earlier stage.  The evidence for the operation on the right is strongest, but was also present at a much earlier stage for the left. At each operation, a pelviureteric junction was confirmed and, afterward, the hydronephrosis significantly improved. The post-operative course was complicated by the development of a staph infection that was initially isolated from the right DJ stent at the time of the removal at right pyeloplasty, which further highlighted the seriousness of the retention of the stent. The subsequent studies have confirmed resolution of the obstruction and decrease in the degree of hydronephrosis”.

 I ended my letter by stating

 “I trust the above information will be of assistance to the Board. Unfortunately, we seem to lack less adversarial mechanisms of dealing with such difficult and complex concerns about care as seen with Liam”.

We still have an adversarial system and there are more Liam-like stories to be told.

Professor Paddy Dewan’s training in Medicine, Surgery and Paediatric Urology has seen him employed in Melbourne, Dunedin, Dublin, London and the USA. Returning to Australia, he initially took up a position in Adelaide, both as a clinician and researcher in Paediatric Urology. He has renamed congenital urethral obstruction (COPUM), developed new approaches to the management of anorectal anomalies, especially the megarectum (Rectal Ectasia), and has written a number of landmark papers on the use of plastics in medicine and bladder enlargement without the bowel lining (Augmentation). 
 

Professor Dewan is the founder and chair of Kind Cuts for Kids which raises the plight of children with surgical diseases in developing countries. Paddy and his volunteer surgical team visit developing countries 2-3 visit a year. More information can be found here.

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Australia License