By Nur Izzaty Shaifullizan
Most of us probably associate dialysis and end-stage renal failure (ESRF) with older adults.
So it may come as a surprise that around 600 children below 18 years of age developed kidney failure in 2018, according to the latest data from National Renal Registry.
These children fight the same battle as their older counterparts while waiting for that elusive organ donor who can provide them with a functioning kidney.
Renal, or kidney, failure occurs when both our kidneys are unable to do their job of filtering and removing the toxins and excess fluid from our body.
While the main underlying cause of renal failure in adults is diabetes (about 65%), it is a different case with children.
Causes in children
According to Women and Children Hospital Kuala Lumpur paediatric nephrologist Dr Mirunalini Appadurai, glomerulonephritis is one of the main causes of renal failure in children.
“It is an inflammation within the filtering system in the kidney that could be due to many different causes or is part of a systemic disease, for example, lupus,” she says.
Renal failure in children is also often a result of congenital anomalies, i.e. the child is born with abnormal kidneys.
“Either their kidneys are abnormal in size, that is they are too small, too big or not formed properly, resulting in poor kidney function, or their urinary tracts are abnormal,” she explains.
This condition is medically known as Congenital Anomalies of the Kidney and the Urinary Tract (CAKUT).
While such congenital anomalies can be picked up during regular antenatal visits during pregnancy, there are some children who may only develop renal problems during the first two years of life.
According to Dr Mirunalini, about 30% of children already have severe renal failure by the time they come to the hospital.
“Some diseases that cause ESRF are associated with abnormal genes. For example, a genetic disorder called polycystic kidney disease causes many fluid-filled cysts to grow in the kidney.
“Another example is Alport Syndrome, which can cause kidney failure, hearing loss and eye problems,” she says.
However, there are some cases that have unknown causes.
“There is a lot more that we do not know compared to what we know. Why these children develop such a condition, we have no clear answer.
“Poorly-controlled diabetes during pregnancy could lead to abnormalities in the baby that involve the kidney and urinary tract.
“How much of the other congenital conditions are associated with the mother’s health and lifestyle is, at this point, not known,” she says.
Age is a factor
While some conditions inevitably result in renal failure, others can be prevented from failure if caught and treated early enough.
“Advanced treatments can be very challenging in a small newborn baby or little children.
“So, for starters, they will be given proper nutrition and their blood pressure will be controlled.
“We will try to prevent infections and a few different factors that could speed up the progression of kidney failure, and try to maintain or delay the decrease of the highest percentage of functioning kidney.
“Even if we cannot delay kidney failure, we can maintain their kidneys at a stable level until they are big enough to undergo further treatment,” explains Dr Mirunalini.
She notes that doctors will only prescribe renal replacement therapy for children who are big enough to withstand the treatment.
This treatment consists of either dialysis or organ transplant, which will replace the normal function of the kidneys.
As the waiting time for receiving a new kidney in Malaysia could take years, the majority of patients usually opt for dialysis.
Doctors usually offer patients the choice between the two different types of dialysis: haemodialysis or continuous ambulatory peritoneal dialysis.
Haemodialysis is a process that pumps the blood from the patient’s body through a dialyser machine to be filtered, with the cleaned blood returning to the body.
This treatment needs to be performed three times a week, with each session lasting up to four hours.
Peritoneal dialysis is a similar process, but uses a dialysate fluid and an exchange bag instead, and is performed four times a day for 30 to 45 minutes per session.
Independent with dialysis
One of the patients under Dr Mirunalini’s care, Nursyahirah Reduwan, 16, has been doing her own peritoneal dialysis since she was 12.
Nursyahirah’s mother, Srirahayu Kamaruddin, 40, says the teachers in her daughter’s school understands her condition.
“The school has provided a clean room, even with a sink, for my daughter to carry out her exchange during recess,” she adds.
Srirahayu does not worry about her daughter’s wellbeing any more because she is confident that Nursyahirah can take care of herself.
“She is just like any other teenager her age. Although she may miss some of her classes, she always finishes her homework.
“My daughter is very independent and she only asks for my help when she needs to,” says Srirahayu.
Nursyahirah, who is taking Business Studies at SMK Convent Jalan Peel in Kuala Lumpur, says all her friends are very helpful to her in school.
“If I am very tired, my friends would help me to carry my bag to class,” she says with a smile.
Srirahayu remembers the exact moment Nursyahirah fell sick with her condition for the first time.
“When Nursyahirah was little, she fell down and I brought her to see a doctor.
“Her body was swelling, her face was very puffy, and I thought it was due to the fall, but that was not the case.
“I thought maybe it was because of germs from my housing area that could have infected my daughter.
“But the doctor told me the swelling could be related to her kidney.
“So, I brought her to the hospital and it was found that there was protein in my daughter’s urine (which is not suppose to happen).
“The next thing I knew, my daughter was diagnosed with nephrotic syndrome.”
The symptoms of ESRF can be very non-specific like swelling, decreased growth and anaemia.
Dr Mirunalini feels that is where parents miss the mark the most.
“I suppose in our population, people sometimes might miss the signal because people think their child is just small in size.
“If a child is not gaining weight appropriately and not growing according to the height expected for their age, parents should take it more seriously and bring their child to see a doctor,” she says.
“ESRF also affects the development of their red blood cells.
“These children can be very anaemic and look pale, which may not be very obvious if you see them every day, until they become very tired,” she adds.
Nursyahirah, who wants to have her own bakery shop once she finishes her studies, is very hopeful that one day she will be given a new kidney, just like her friend, Muhammad Syahmi Mohd Shamsul Bahari, whom she has known since they were children.
Never give up
Syahmi, 18, has just recently celebrated his sixth anniversary of getting a new kidney from an anonymous donor.
He recalls that he was only three years old when he started getting hospitalised in the Hospital Kuala Lumpur paediatric ward.
Looking back to when he was sick, he shares that he did not feel the need to ask why was he in the hospital or why there were problems with his body, he only wanted to play football with his friends in school.
Fast forward to today and he can now do many things he could not do when he was a child.
He happily shares that since he received his new kidney, he can play as much football as he wants with his friends.
In fact, he was working part-time as a waiter in a hotel while waiting for the Sijil Pelajaran Malaysia (SPM) results to be announced.
“These things would probably be prohibited if I was not healthy. Therefore, I am very grateful,” says the former student of SMK Yamtuan Radin in Port Dickson, Negri Sembilan.
Syahmi’s mother, Noorul Sri Aryanie Mohd Alias, 40, shares that she initially could not accept that her son was so ill at such a young age.
However, as time went by, she managed to overcome her denial and fear, and learned to embrace their fate.
“Listen to the doctor’s advice, because they know what is the best for you,” she advises parents who are going through the same situation.
“Keep your faith strong in these challenging times and eventually you will see the light at the end of the tunnel,” she says with a smile.
Also a patient under Dr Mirunalini’s care, Syahmi hopes that other children who are still battling with this disease will never give up hope.
“Never look back and always think about the future as we must have ambition in this life.
“Focus on your goal to be healthy and never let our sickness deter us from achieving it.
Dr Mirunalini shares that Syahmi is not only a good patient, but also spares the time to help lift up other patients’ spirits.
“There is a two-year-old girl who is our youngest dialysis patient. Her mother is going through such a difficult time trying to come to terms with the fact that her baby is going through dialysis.
“Syahmi was in the ward and I brought him over to see the girl. Her mother asked if he could draw anything for her daughter.
“A few days later, he brought a drawing with a small girl standing in the field with her hands towards the sun,” she says.
Dr Mirunalini, who has been treating children with renal disease for many years, is inspired by her patients.
“These are the children whose their bodies have failed them, but they amaze me.
“They have to come to hospital three times a week, but some of these kids are happy and they still have fun.
“We learn so much from our kids. This teaches us how you get through adversity and how not let anything knock you down,” she says.