‘It breaks my heart to see my child sick’

A Mochudi mother of a baby with liver disease is praying day and night for her child to get a liver transplant. A sick child is every mother’s nightmare. All one can do is hope for the best. This is the situation that 23-year old Lesedi Pilane finds herself in. Pretty with beady bright eyes and soft features, the soft-spoken mother is heartbroken by the pain and anguish that her child Rorisang Nathan Pilane endures. Rorisang is in the progressive stage of liver disease and needs an urgent liver transplant. When Pilane spoke to The Midweek Sun yesterday, she had just returned from a check-up at Princess Marina hospital. Mother and child are currently at Deborah Retief Memorial hospital in Mochudi where baby Rorisang has been admitted since 1 January 2019. Pilane and baby have been in and out of hospital for the past few months since Rorisang was diagnosed with biliary artesia (liver disease) at three months old. Biliary artesia is defined as a rare disease of the liver and bile ducts that occurs in infants and is characterised by obliteration or discontinuity of the extrahepatic biliary system, resulting in obstruction to bile flow. This progressive liver problem is a chronic disease that often becomes evident shortly after birth with signs of yellowing of the skin and whites of the eyes (jaundice). Bile eventually builds up in the liver and damages it, leading to scarring as well as loss of liver function and tissue. The unemployed Pilane seems overwhelmed by the situation and admits that it has been a tall order to come to terms with living with and taking care of an ill child. Pilane is however taking it all in her stride. After her child was born, she did not suspect that anything was wrong. They went for the usual six weeks check-up after birth and the nurses also gave them a clean bill of health. “I only realised that something was wrong when the baby’s eyes started turning yellow and his urine was also dark yellow. His tummy was also stiff and slightly swollen. I found this strange and that is when I went back to the clinic.” That is when Pilane was given a referral to Princess Marina Hospital where they confirmed that Rorisang has biliary artestia. Pilane went to register Rorisang at the transplant unit. At four months old a Kasai operation (surgical treatments performed on children with biliary artesia) was done on Rorisang but it was not successful. They told her that operations of this nature are often done when a child is two months and below. “At Princess Marina hospital, I was told that his liver was already damaged so he needs a liver transplant. I was even told that the situation was so dire that he would live up to a year and a half.” She did not receive any assistance. She was informed that the doctors were attending a workshop in India. After some time she was contacted and told that she could be his living donor if a donor is not found. “We did tests and everything seemed to be going well. They told me that they had taken the blood samples to a lab in South Africa but never heard from them again.” Pilane says that they were admitted at Princess Marina hospital in March last year. In April an operation was done on Rorisang to drain bile from the liver. Rorisang was given medication to support his liver but she says it is not working as his situation is still deteriorating. Pilane was informed that a liver transplant in India costs P400, 000 and P1.3 million in South Africa. Pilane, who is unemployed, survives off the generosity of family members, who she says have been supportive. She says it is difficult to leave him with anyone else. “He does not cry or complain when he is sick so it is difficult for those who do not know to take care of him. I know that once he sleeps often or looks drawn then it means that he is not feeling well.” Of late, baby Rorisang has not been eating well. “He only drinks milk. He has now lost a lot of weight. Dieticians have recommended him diets and ordered him some foods but he refuses to eat and if you force him to, he actually vomits,” his mother says. Oddly, a few months ago, baby Rorisang could gain a kilogramme per day. The doctors told his mother that this was because of water accumulation and explained that it was not good as it would compress the organs such as the lungs and make him struggle to breathe. “They said we could lose him before the operation so they suggested that he be medically tapped in order to reduce the water.” Baby Rorisang still faces medical challenges right now. His eyes, private parts and legs are swollen but his size has reduced since the tapping. Pilane says that she is unsure what the current state is with the liver transplant. “I was told that government only funds one liver transplant patient per year. My particulars are with them so I do not know whether they will assist me.” On Monday, Pilane was contacted and asked to come to Princess Marina Hospital for a blood test and cross match. She is praying for a breakthrough for her child and in the meantime she takes each day as it comes. “I can’t eat, I can’t sleep. I am stressed. I have put all my faith in God.” At the time of going to print, Pilane was still waiting for a response regarding the possibility of a liver transplant.  She has also received request to assist from a few people and has already sought assistance to get a trust fund account opened for Rorisang.