It was pouring outside as I walked into the ward one Thursday evening, feeling tired and hungry from a day in the operating room. “Hi doctor,” came a soft voice from the acute cubicle. I turned to find a young mother sitting next to her child. He was only a baby, barely a year old and lying on his side breathing rapidly, despite oxygen supplied by a tiny nasal cannula. His wet cough and glassy eyes alarmed me until I remembered that this was the baby with posterior urethral valves and severe renal dysplasia.
In paediatric urology, we rarely encounter death. Our main responsibility is to prevent onset of chronic kidney disease in children with congenital renal anomalies, and to help children cope with their disabilities in order to lead as near normal and independent a life as possible. On rare occasions, we have difficult conversations with parents. This particular baby had undergone valve ablation, and yet his serum creatinine continued to double every few weeks.
The paediatric nephrologists who care for such patients often ask if anything can be done to slow down the deterioration in renal function. So I assess the bladder pressure with a urodynamic study, ask the mum to perform clean intermittent catheterisation of the bladder diligently and think hard on whether a vesicostomy procedure to continuously drain the bladder would help. In this child, it didn’t. So we waited for weight gain so that peritoneal dialysis with Tenckhoff catheter could be performed. By that time, we knew that his dysplastic kidneys would not be able to support him for long. Just as his mother knew.
In children with chronic and end-stage kidney disease, the discussion on palliation occurs when we are not able to slow down renal function deterioration, or when the child is not a candidate for renal replacement therapy. This can happen when the patient’s renal dysplasia is advanced and would not improve with measures such as bladder augmentation to reduce bladder pressures. More often, this situation arises when the child has other concurrent anomalies, a genetic syndrome or global developmental delay, that prevents them from leading an independent life.
In my experience, the correct decision for the child is always apparent, but requires immense courage from the parents and support from the health care professional. The parents would feel a lot of guilt and our conversations should aim to lessen that feeling for them, by not forcing the decision but allow events to unfold gradually while providing clear and honest explanation. These ideals have often been quoted by our forefathers in medicine,
“To cure sometimes, relieve often, and to comfort always.” – EDWARD LIVINGSTON
Dr Poongkodi Nagappan graduated from University Malaya in 1999. She has a special interest in congenital conditions of the genitourinary tract and genitourinary reconstruction. She is a Consultant at the Urologist Department of Urology, Institute of Urology and Nephrology, Kuala Lumpur Hospital.
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This information was published with permission from Malaysian Association of Paediatric Palliative Care (MAPPAC)