WHILE everyone celebrated the recent Hari Raya AildiAdha with family gatherings in their hometowns, Nurhafizah Mohd Hanafiah had to stay put in her uncle’s house in USJ3 because her health did not permit her to balik kampung for the celebrations.
She will have to put off going back to her family home in Simpang Lima in Sungai Besar for now as she seeks long-term medical attention for her condition.
Nurhafizah who just turned 23 on May 7 stands at 1.3m tall and weighs at only 32kg. She was born with an abnormal heart and abnormal kidney system which have contributed to her poor health from birth – congenital abnormality of the urinary tract; congenital heart disease and bronchial asthma. Her heart condition was fixed when she was two.
Despite her fragile condition, Nurhafizah still prays and hopes that she will be able to lead a normal life one day; to find work and be self-sufficient.
“When I wasn’t feeling well back in 2018, I went to the hospital in Sabak Bernam. There, doctors discovered that my right kidney was damaged beyond repair and my left kidney was swollen.”
“Doctors had to make an incision to drain the fluids from my left kidney into a bag. In order for this to work effectively, I have to go back to the hospital fortnightly to clean the wound and also to reinsert a new tube,” she said, as she showed the bag which she has to carry with her everywhere she goes. The procedure is described as a nephrostomy tube (NT) – inserting a tube from skin into the kidney to drain the urine.
According to her medical records, Nurhafizah has never been able to control her urination resulting in incontinence which results in her always wetting her pants. She was diagnosed with kidney failure in 2018. Her left kidney was very swollen while her right kidney shrunk. The draining tract from kidneys to bladder is also very swollen. When doctors put her under sedation to examine her perineum, they noticed there’s no opening to pee. She has another hole to pee called a sinus but that’s abnormal.
The whole kidney system was swollen because she doesn’t have proper opening to pee, that causes obstruction to urine drainage hence backflow until the kidneys swollen and damaged.
According to her mother Halimah Denan, Nurhafizah’s urination was not good since birth and doctors back then had noticed an enlarged kidney which they had considered normal.
“My daughter has been in and out of hospital for most of her life. Over the past two years, she has had no sensation to urinate. She has been wearing diapers ever since.”
“Her only hope is a kidney transplant which can only be done overseas but we can ill afford that. If her remaining kidney fails, she will have to be put on a dialysis machine,” Halimah 58 said, adding that her husband Mohd Hanafiah Hassan, 67 who recently suffered a stroke was jobless.
Halimah herself is a diabetic and is suffering poor vision.
“We spend almost RM100 for transport to bring Nurhafizah to Hospital Kuala Lumpur every fortnightly. The three of us now ‘tumpang’ at my younger brother’s house in USJ3 because it is closer to the hospital for my daughter’s treatment.”
“We’ve been here for almost a year now. If there’s any kind soul out there who can help, please help us,” she said, almost in tears.
Because of her condition, Nurhafizah says sometimes she bleeds from her nose and mouth. Her appetite is also greatly affected.
“I am normally on a liquid diet. Occasionally I eat rice with kicap (soya sauce) and some vegetables. I can’t take meat or fish.”
“I drink some Milo and sometimes some Dutch Lady milk,” she said.
Nurhafizah’s uncle Sepuan Denan who works as a security manager in USJ said it would greatly help ease the family’s burden if volunteers could help ferry his niece to the hospital and back once every fortnightly.
If you wish to find out how you can help, please contact Sepuan at 016-368 4269.