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.
BACK ON TRACK
BR train 0501/BD 540 would not have derailed on 10 December 2019 had necessary precautions been taken, Botswana Railways (BR) staff members told the ongoing commission of inquiry in Mahalapye.
They blame the fatal accident in which two BR employees were killed on a raft of lapses, indecisions and negligence on the part of BR management. BR Senior Traffic Controller Simon Matenje revealed that there is a WhatsApp group that discusses everything concerning the running of BR trains. He said meteorological services had posted a memo warning that there would be floods on 4th December and shared it on the WhatsApp group. “The contents of the memo and their implications were discussed,” said Matenje who revealed that the group comprises most of the senior personnel in the BR hierarchy.
He lamented that although read and discussed the contents of the memo were “not given due attention.” Above that, on 9th and 10th December many BR staff members using the south bound and north bound trains warned relevant authorities about the possibility of floods, said Matenje. He believes there was negligence of duty on the part of management because everybody was aware of the floods at Moreomabele and Palla Road. “The relevant office should have directed stoppage of the trains or the adoption of an appropriate speed limit. “The best that management did was to give warnings about the floods but fell short of prescribing a solution,” he said. Matenje, who was on leave, said that he communicated his concerns about the reports of flooding and possible solutions to no avail.
When asked who exactly had the authority to do that, Matenje explained that it was the Operation’s Manager. Matenje also decried the lapses in the organisation’s system. He said motor trollies are helpful when inspecting the railway line. “However, they have not featured for a long time,” said Matenje who feels that regular inspection of the rail is a very critical part of safety. He said BR has not held any safety workshops in a long time. Mompoloki Rutherford, a train driver also appearing before the commission conceded that trollies had not been used on the BR lines for a long time. He said some senior managers use the train to inspect the line instead of trollies. “There are only two seats in the cabin but, contrary to safety rules, sometimes they just join us in the cabin which is a breach of the safety rules,” said Rutherford. Dikabelo Nawa, a retired train driver noted that BR workers were a sad lot because of pressure always exerted on them by management.
“Drivers work under pressure. The line between Mafikeng and Plumtree is old and very bad but we were always pushed by management to arrive on time. “There is just too much pressure. I once lost time and that put me into a big problem.” He said. He is also unhappy with the undergrowth and hanging branches next to the line because they obstruct the view of the crew. He appealed to the panel to recommend the introduction of a training centre for BR staff.
Peter Mokokwe, a recently retired train driver also complained that the rail road is never inspected. In addition to that, he told the commission that, he witnessed water around Palla Road on 9th December at the same place where the derailment later took place. Mokokwe, who himself did not alert control room about the water because he had heard through radio communication that his colleagues had reported the situation to control room, is also of the view that the disaster could have been averted had the 501 crew been alerted of the water situation.
On the other hand, a train controller named Moses Sethomo says he never got the communique warning the drivers about the impending floods. “There was a clear breakdown of communication,” said Sethomo who revealed that very often, even BR assets are wrongly used. “For example, sometimes freight locomotives instead of passenger train locomotives are used to haul the passenger train and this is a safety concern,” he noted. The hearings are continuing this week. The rail services that were suspended have since been resumed.
Youth lament slow pace towards ICPD commitments
Young people representing Botswana at the International Conference on Population and Development (ICPD25) in Nairobi, Kenya last week have expressed disappointment at the slow pace at which governments are moving towards achieving ICPD25 ideals.
Trevor Oahile, a youth advocate and student at the University of Botswana participated at the Nairobi Summit to highlight on Sexual Reproductive Health and Rights (SRHR) of men and boys.
Oahile hosts a radio show sponsored by the United Nations Population Fund (UNFPA), Don’t Get It Twisted on Yarona FM. The show deals with issues that affect boys and men. Oahile participated in a panel discussion at the Summit on the involvement of men and boys in accelerating the ICPD promise.
He is of the view that countries needs to work together to end violence that is perpetuated by harmful gender norms that are antagonistic to progress towards the ideals of the ICPD agenda. “Botswana government and private sector are still challenged to invest a lot of money into implementing their commitments,” Oahile said, adding that Comprehensive Sexual Education on the other hand has to be rolled out to every school in the country.
“We also acknowledge that it is important to avoid stereotypes that impact decisions that people make. Men and boys often avoid certain services because they are known to be for girls and women,” Oahile said. Millicent Sethaile was at the Summit as a youth ambassador from an organisation called Her Voice, which funds and offers grants to smaller organisations that advocate for SRHR in communities. In her view the summit was significant because it was an opportunity for countries including Botswana to make commitments to fulfill the unfinished business of the ICPD made 25 years ago.
“What struck me the most is that I realised that Botswana has a long way to go to achieve the commitments she set for herself.”Sethaile also observed that the four commitments including to strengthen access to family planning, the reduction of maternal deaths, reduction of Gender Based Violence, provision of quality, timely and disaggregated data are activities that were already in the pipeline and have been discussed before. “I believe we now have to come up with actionable items that we can work on so that we can effectively deal with current challenges.”
For 18 year old University student Michelle Simon, the Nairobi Summit was a reality check, an opportunity to reflect and map the way forward.
“I realised that there are so many challenges, especially in Africa concerning SRHR,” Simon said. She also realised that Botswana has a lot of catching up to do to implement the commitments of the ICPD. “I also realised that issues including youth in power were left out.” Botho Mahlunge on the other hand comes back from the Summit with a conclusion that there are a lot of predicaments that young people find themseles in across the African continent including GBV and teenage pregnancy.
Programmes need to be intensified to ensure implementation. Mahlunge is also of the view that there is minimum youth engagement on issues that affet them the most. “Young people are tired of always convening about the same issues. It’s time to see the outcomes of Summits and Conferences,” Mahlunge said. She advised the youth to also be willing to engage when the oppotunity avails itself and to take up programmes that have been set to help them. Mahlunge said that failure to educate our young people on sexuality “is the reason so many girls are getting pregnant and infected with HIV.”
She said the continued exclusion of young people in rural areas from sexual and reproductive health and rights discussion is also to blame for the prevailing state of affairs. “Young people in rural areas are completely vulnerable. They are so far removed from the little information and services available to young people in urban areas,” Mahlunge observed.
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