Read Bikram’s story here

Bikram Bogati is a 17 year old boy who comes from a poor family. He has the most beautiful smile! He comes from the province of Accham close to the Indian border in the north west of Nepal. Life is very difficult for many Nepalis living in remote regions like this, and when it comes to health and medical care, because what exists where he lives is beyond the imagination of many.

Until the age of nine, Bikram’s problems were not unlike anyone else’s in the village. Life changed when Bikram’s father walked out on the family leaving his mother responsible for Bikram and his two siblings only to return, completely out of the blue ten years later, but with no money.

Things for Bikram also changed dramatically when a small corn developed on his foot. It grew bigger and bigger, and he then started to have problems walking due to pain. In 2015 he had surgery in India, but when he returned home his mobility became worse and a few months later he was bed-ridden. People thought it had something to do with the surgery, and Bikram’s life then became even more difficult because his mother was working all day and was not able to take care of him. He was no longer able to attend school.

Luckily for Bikram, humanity in his village is not dead. Some students from the region who knew Bikram and had heard about NHEDF brought him to the Shelter in July 2017. It took months for doctors to work out what was wrong with Bikram and finally a genetic disease called Friedreich’s ataxia was diagnosed. This is an autosomal recessive inherited disease that causes progressive damage to the nervous system and manifests initially with symptoms of poor coordination such as gait disturbance. It does not affect cognitive function.

Bikram cannot be cured. He can only be helped to manage his disability. Whilst regular physiotherapy did not improve his mobility it was important to prevent contractures and maintain muscle tone. He has now been provided with a wheelchair as he cannot walk without support. Now Bikram has a decision to make. He can go back to his village and return to school. The other option is for NHEDF to arrange admission to a hostel where he can also continue his education in Kathmandu. Bikram will be wheel-chair bound for the rest of his life, and NHEDF would also like his siblings to be tested for the same disorder.

It is hard for everyone when patients cannot be cured. Bikram hit rock bottom for a while, refused to eat, and became very depressed. Thanks especially to Manish, a fellow patient, and the supportive environment at the Shelter, Bikram’s beautiful smile returned and he feels life is worth living again.

Bikram was eventually discharged from NHEDF with a diagnosis (and a wheelchair) in March 2018 with plans to return to school and finish his education. Luckily there is a straight road between his home and his school and he can be  independent again. NHEDF is trying to obtain screening for Bikram’s sister to determine whether she is afflicted with the same genetic condition as Bikram.

 

Read Sandeep’s story here

Sandeep is one of six children. His family are very poor and farm a small parcel of land. His home was badly damaged in the earthquake in 2015 when a wall collapsed on him and he suffered serious internal injuries requiring major abdominal surgery. After his surgery he had to have a permanent indwelling urinary catheter. He was eventually referred to NHEDF who organised investigations and the insertion of a supra-pubic catheter and in March 2017 he had a number of urethral dilations for a urethral stricture. Eventually he was able to pass urine normally and his supra-public catheter was removed. He was finally discharged on April 4th, 2017.

In January 2018, Sandeep was re-admitted to NHEDF with abdominal and pelvic pain. He had a retrograde ureterogram which showed an obstruction causing backflow of urine into his kidney (hydronephrosis). He had a ureteroscopy and surgery to stent this and prevent kidney damage. He then went on to develop an infection requiring re-hospitalisation and intravenous antibiotics. Further investigations showed a 0.5cm stricture at the bulbo-membranous junction which sits almost at the opening into the urethra. Whilst further radical surgery was contemplated it was eventually decided not to proceed because of the location of the stricture which is so close to the urethral sphincter muscle, which if damaged, could cause complete incontinence. Sandeep instead, had a series of urethral dilatations and so far has had no more problems passing urine. He was discharged from NHEDF in May 2018.

Sandeep is happy. He is back at school and no one teases him anymore. He does not smell of urine and does not have to carry a catheter bag wherever he goes. He is in class 5 and we really hope everything goes well for him and that is the end of all his medical problems. Good luck Sandeep!

Guess who went home today?

Bibadari Tamang sustained injuries to both her legs and feet as a result of the first earthquake. Like many of NHEDF’s patients she has the double disadvantage of coming from a poor family and living in a remote region – two reasons why she was unable to access medical care.

When her wounds to her feet and toes became infected, gangrenous and offensive smelling, she was sent to live in a stable and did not receive any treatment whatsoever. Her family neglected her. Everyone who has heard her story and cared for her was amazed she survived.

In March 2017 Bibadari was found by someone from an organisation called the Karuna Foundation Nepal who was visiting her village and they brought her to Kathmandu for treatment. She was admitted to hospital but they simply did her dressings and then discharged her so she was referred to NHEDF’s Shelter for nursing care, support and physiotherapy in March 2017.

Unlike all NHEDF’s other patients, Bibadari was not accompanied by a carer to look after her, so other patient’s family members stepped in and filled the gap, accompanying her to hospital for her many stays, and helping her at NHEDF. NHEDF is so grateful to their patients when they treat each other like family. participate in each-others healing and they are also play a critical role in the day to day running of the Shelter.

On arrival, NHEDF’s nurses were horrified to find maggots in her wounds and over her time at NHEDF, Bibadari had multiple surgeries and hospital admissions, including plastic reconstructive surgery to save her feet from being amputated, and eventually in February 2018 her road to rehabilitation was complete. She was discharged home in the company of a representative from the Karuna Foundation, who formally handed her back to the Village Development Committee and returned her to her family. They will continue to check on her and continue to ensure that she does not suffer any further abuse or neglect.

A huge thank you goes to team NHEDF for their wonderful care; the Karuna Foundation in Nepal who helped pay for her initial treatment; and other patients family members who agreed to look after her, accompany her to hospital and care for her. Good luck Bibadari!

Great work NHEDF team for saving yet another life – she would have died without you…..

Read about the consequences for Krishna Hari of never being vaccinated….& more…

Sometimes an occasional patient at NHEDF does not show any improvement over a period of time. This is very distressing for the patient’s family and also for NHEDF’s staff who work so hard to try to make things better. In these circumstances NHEDF’s aim is to try to get the family to the point where they can take their loved one home and care for them there, but sometimes, not even this is possible. For Krishna Hari, an earthquake victim, NHEDF has committed to take care of him for as long as is necessary.

Complicating an ethical dilemmas like this is a history of an absence of palliative care in Nepal, however over the last 15 years, small hospice units have been set up in some places, and palliative care services have been established in some larger hospitals. In 2009 a national association for palliative care called NAPCare was developed, however it will take some time for the concepts of end of life and palliative care to filter through, and of course, it needs to be free which it is currently not…..

This is Krishna Hari’s story:

Krishna Hari is one of four children. He comes from Nuwakot, about three hours by bus from Kathmandu. His parents are farmers. There was just Krishna Hari and his elder brother at home as both his sisters are married and live far away. Their house was destroyed in the earthquake of 2015 and they have not been able to rebuild it. His family still live in a makeshift shelter.

Krishna Hari was 29 when he was admitted to NHEDF in November 2016. He was working as a trekking guide in the village of Langtang at the time of earthquake. Langtang was completely obliterated by an avalanche triggered by the earthquake and almost everyone died. Krishna Hari was one of the few lucky ones – he was not swept away or crushed by the thousands of tons of snow, rock and ice but suffered only an ankle injury and was eventually helicoptered out and admitted to hospital where he never received a tetanus injection. He went on to develop progressive muscle weakness eventually losing total control of all his voluntary motor movements. He essentially became a quadriplegic and it was not until he became completely paralysed that the doctors diagnosed him with tetanus. Krishna Hari eventually required artificial ventilation and experienced a hypoxic brain injury when he was a patient in ICU on a life support machine. The hospital electricity went off and Krishna Hari did not receive any oxygen for four hours resulting in a hypoxic brain injury from lack of oxygen.

Krishna Hari remained in hospital for a year and a half before he was transferred to NHEDF weighing all of 35kg. He needed and still requires around the clock nursing care and assistance with all the daily activities of living including the administration of regular medications, nappies/diapers/incontinence products and has a fine bore naso-gastric tube through which he is fed. He needs full nursing care, catheter care and naso-gastric tube care and thanks to NHEDF’s wonderful care and the attentive devotion of his father who care for him, he weighs 50kg! He requires daily physiotherapy including range of motion exercises and chest physio to prevent contractures and chest infections.

Whilst sensation has slowly returned, and Krishna Hari can feel some pain evident by grimaces when painful stimuli are applied, he still has no voluntary muscle movements, does not respond to commands, cannot talk and remains essentially paralysed.

To begin with, Krishna Hari’s medical team retained some optimism for prognosis, rehabilitation and recovery but there has been no progress. 

To send Krishna Hari home in his current condition would be unacceptable as there are no medical facilities near his home village where his family could seek help for complications, and even if there were, they are unable to afford the substantial costs of hospitalisation in Nepal.

When Samrat. NHEDF’s Director, advised us of this family’s financial status I thought he must have added a couple of zero’s to the cost of treatment by mistake, however that is not the case. Initally Krishna Hari was admitted to a Government hospital where his daily medical and associated costs were around NPR 2000(AU$20). He went on to have 100 days in ICU and by the time he was admitted to NHEDF, Krishna Hari’s father had spent AUS $32,000 for his treatment at different hospitals in Kathmandu. He used Krishna’s own savings from working as a trekking guide, relied on the generosity of friends and family, sold off some of his family’s land and still has a debt of NPR 1,800,000.

Lila Nath is hoping that one day the government will help him to pay off his remaining debt otherwise he will have to sell the rest of his land to cover it and his family will be homeless. 

Reading this story, you may wonder why Krishna Hari continues to be treated. Many complex issues and ethical dilemmas present to NHEDF on a regular basis and there are no easy solutions. This tragic outcome would never have occurred if Hari Krishna had simply received a tetanus injection and someone in ICU had thought to give him supplementary oxygen when the ventilator stopped working in ICU.

In Nepal withdrawing treatment in the absence of improvement, or not treating complications as they eventuate, is not an option and tantamount to murder. One day when he no longer responds to treatment, Krishna Hari will become a palliative care patient but in the meantime he will stay at NHEDF which was initially established as a treatment centre for victims of the 2015 earthquake. Samrat, NHEDF’s Director, feels a huge sense of responsibility to care for Krishna Hari until the end, because without NHEDF, Krishna Hari and his family have no one else to turn to and nowhere else to go.

NHEDF is trying hard to get a Disability card for Krishna Hari which will entitle him to a Government payment of Rs 5000 (Au$ 60) a month however even a simple thing like this is proving hard because the Government insists that Krishna Hari has to obtain this from his village himself.  Obviously he cannot travel.