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.

Happy Anniversary Parbati! Imagine the following…..

Imagine a sixteen year old Australian girl from a poor family who has badly broken legs as a result of an accident. She gets whisked by ambulance to a competent hospital where she is operated upon, has state of the art surgery with pins, plates and screws and all sorts of other hardware inserted to unite the fragments of broken bones. She returns from surgery with both legs in plaster. She can weight bear on her left leg but not the right. She is mobilised by the physiotherapist using crutches. All her medical expenses so far are covered by Medicare, our public health system. She goes home after seven days and returns to school. She makes a good recovery and within six months she is playing sport at school again and doing everything she normally does. A couple of years later she finishes school and gets a job.

Parbati was 16 when she was admitted to NHEDF in January 2017.She comes from the remote region of Doti in the far west of Nepal, was tending the family’s goats when she was caught in a landslide,  struck by a tree and swept into a river. She was pulled out by villagers and sustained multiple fractures to her right leg. Her family could not afford medical treatment for her, but her community rallied around and helped financially, so she was admitted to a local hospital for wound dressings but the hospital had no facilities to do anything about her fractures.

After ten days the money the people in her village had collected for her had run out and Parbati’s father had to make a choice – she could either return home to their remote region with multiple fractures unable to walk or he could sell some land to keep Parbati in hospital and she could be brought to Kathmandu for treatment. Her father sold their property leaving only their earthquake damaged house.

Parbati was admitted to hospital in Kathmandu where she stayed for 300 days before being admitted to NHEDF. Since she has been at NHEDF she has now had seven surgeries including bone grafts and a bone marrow transplant which was unsuccessful and she had many complications.

During her time at NHEDF she has required ongoing nursing care for wound management, care of the external fixators and regular physiotherapy to decrease muscle wasting. She also has regular orthopaedic reviews, x-rays to assess the healing of the fractures, and ongoing surgeries. When the fractures are all healed the fixators will be removed and she will be able to weight bear. After further physio she will be able to go home!  

The future for girls like Parbati is complex. If she loses her leg she is unlikely to get married in a place like Nepal. Her parents are elderly, and her family is poor. They have no electricity and their tiny house made of mud and stone was damaged by heavy monsoon rain. Parbati’s seventy year old father is taking care of her at NHEDF and her mother is now living with her elder daughter in another village.

The orthopaedic surgeon who was treating Parbati has since moved to another hospital and Samrat has so far been unable to find another surgeon to take over her care. The challenges of navigating the medical system in Nepal can test the patience of a Buddhist saint!

This is what it means to be disabled in Nepal

In Nepal, being disabled is like a curse from a previous life, because many people think that you must have done something really bad in your past life and because of that, you have either been born disabled, or become disabled, as you travel down the road that constitutes your life.

For young people experiencing disability, few of them will be able to find a partner. Occasionally women find husbands who are also disabled, or men have wives who leave them when they become disabled and vice versa.  Most of the time, however,  the harsh reality of disability in Nepal means you are on your own, and if you have no family to take care of you, you are also banished to a life of poverty.

Sometimes we get asked why NHEDF tries so hard to save a limb, but it is not just a limb, it is a life.

Keep this in mind when you read our patient stories, because every time NHEDF prevents someone from enduring significant disability, they change the future for someone who could otherwise be banished to a life of loneliness, isolation and poverty.

 

 

Migrant workers in Nepal – read Nokh’s story…

What can happen to savings when you live in a country that does not have universal medical care

According to the International Labour Organisation (ILO)  more than 520,000 labour permits were issued to Nepalis planning to work abroad in 2014. Malaysia was the number one destination country closely followed by Qatar, Saudi Arabia, UAE and Kuwait.

In Nepal remittances have become a major contributing factor to increasing household income as well as  the national GDP.  In 2013, remittance inflows topped US$5 billion, or 25 per cent of the national GDP. This placed Nepal third among the countries receiving the highest proportion of remittances in terms of GDP.   http://www.ilo.org/kathmandu/areasofwork/labour-migration/lang–en/index.htm

Read Nokh’s story: 

Nokh comes from a small village called Prandhara in Dang in the west of Nepal. In Nepal people in rural areas rarely buy land – they inherit it and it is passed down from generation to generation. Nokh had land but was a subsistence farmer. He decided to work overseas to try to lift his family out of poverty, and by working as a labourer in Malaysia for twelve months every 2 – 3 years he was able to earn enough to live on, save a little and educate his children, then aged five and ten.

In 2016, Nokh fractured his left patella (kneecap). Despite multiple surgeries including the insertion of a metal rod which left him unable to bend his knee, the fracture would not heal. Eventually he was diagnosed with osteosarcoma – a rare form of bone cancer which developed within the knee joint. He then underwent an operation called a rotationplasty – a rare surgical procedure that involves removing a tumour around the knee joint or lower leg and rotating the feet and ankle 180 degrees so the foot faces backwards. The logic of this is that the heel serves as the new knee joint and the patient’s mobility is improved. Everything is held in place with screws and plates until healing occurs. The patient attracts a lot of attention because it looks like the patient has a very short leg with the foot facing backwards.

Before the rotationplasty Nokh’s medical bills were about AU$11,500. After the rotationplasty they sat around AU$30,000. All his savings were gone. Nokh had sold his family’s land to pay for his treatment; had borrowed money from relatives; his children could no longer attend school; and the family was destitute.

In June 2017 Nokh was referred to NHEDF’s Shelter. He still had an open wound which required regular dressings, needed ongoing physiotherapy and the fitting of a prosthesis. This was only the second time such surgery had been done in Nepal and whilst Nokh’s wounds are healed the final phase of his road to rehabilitation is proving difficult as so far no one has been able to fit him with a prosthesis. No one has ever fitted a prosthesis for a patient who has undergone a rotationplasty and no one knows what to do.

In the meantime, he remains at NHEDF, whilst Samrat, NHEDF’s Director, continues to try to find help. NHEDF has funded Nishma, Nokh’s wife, to attend sewing school to learn how to make garments and another Australian organisation called We All Rotate are funding Nokh’s children’s education. If you know anyone who can fit prosthetic legs for patients like Nokh please let us know!  https://www.weallrotate.com 

Travel our journey with us by making a donation – a great way to help us is through a regular fortnightly or monthly donation – and between us, we can change the life of another family like Nokh’s who are living in poverty and have had their lives drastically changed as a result of trauma. 

Read Sanumaya’s story!

Sanumaya is a seventeen year-old girl who was admitted to NHEDF in June 2017 with the most beautiful hair…… When she was a baby, her right leg was burned in a fire. As she grew, it became shorter than her left and she began to have significant problems with mobility. These problems became unsurmountable, but because her family are very poor, and medical care is not free in Nepal, Sanumaya’s family could not afford to bring her to Kathmandu for treatment.

In 2017 the National Disability Fund (NDF) held a medical camp in Sanumaya’s  village and promised to fund her treatment.  She underwent orthopaedic surgery to increase her leg length and was discharged with a metal fixator and a wound infection, however her family had nowhere to stay in Kathmandu. They stayed with a relative in a rented room but had no access to nursing care for dressings or physiotherapy for rehabilitation. They went back to see the NDF who referred them to NHEDF.

Like many of NHEDF’s patients who are away from home for a long time, Sanumaya had not been home for nearly a year. Her family’s house had been destroyed in the earthquake and her family were building a new one with the US$2000 that they were given by the Government. Their new house is still far from finished but because she really wanted to go home, even if it was just for a short time, Samrat planned a visit for her.

Sadly, a day before they were due to leave, Sanumaya had some bad news. Her older sister had had a heart attack and had passed away. Samrat took her home so she could both visit her friends and family and say goodbye to her sister. It was heart-wrenching moment for everyone there.

 Sanumaya was finally discharged from NHEDF in May 2018. Whilst she did have some remaining difference in leg length this has been corrected through the use of an orthotic. She is back home and best of all, she is back at school studying in Year 10. She wants to be a nurse like her ‘sisters’ at NHEDF. We wish you good luck Sanumaya. We hope your home is finished now and we hope you achieve your dream!

Why Nepal needs NHEDF by Karna Bahadur Dangi

According to me, NHEDF is a human oriented organization working for the welfare of the people in need at all times. In an underdeveloped country like ours, I’ve seen a lot of organization promising to provide services to people and working for the betterment of the society but if you look closely you’ll realize that they are not fully working for the cause but NEDEF is different.

There are people from all socio-economic backgrounds in Nepal, but NHEDF focuses on providing services to people with poor economic background. I’ve seen situations where people had to sell all the property that they once owned for their own or their loved ones medical treatment. On top of the expensive medical treatments there are other expenses to be taken care of like the food and accommodation expenses. NHEDF on the other hand has been supporting such people with food, accommodation and medical facilities for more than 3 years. This organization has been helping the poor people from underdeveloped places of Nepal ever since.

I myself am an earthquake victim and for me to pay for my treatment along with the food and accommodation charges in Kathmandu would be impossible. But, NHEDF it taking care of all my expenses since 26 months due to which I don’t have any credit till date.

I hope that NHEDF will keep up with their good work and support those who cannot afford good treatment and go for their follow ups from time to time. Please support the work of this organisation. Thank you.

Read Parbati’s story…

Parbati comes from a very poor family. She has two older sisters and is being cared for at NHEDF by her father. At the end of last year she was herding the family goats and was caught in a landslide, hit by a tree and swept into a river. She was pulled out by villagers and had multiple fractures to both her legs. Her family was unable to afford medical treatment for her, however people from her village helped financially and she was sent to Kathmandu where she had surgery and external fixators applied. She needs nursing care for wound management of the external fixators as well as regular physiotherapy to decrease muscle wasting and after the Dashein festival she will be having bone grafts. She has been at NHEDF for so long she has become like a sister to the nurses. Good luck Parbati – we hope you will be better soon! Happy Dashain!

 

Patient stories – imagine where Parbati would be without the support of her community

Parbati comes from a very poor family. She has two older sisters and is being cared for at NHEDF by her father. At the end of last year she was herding the family goats and was caught in a landslide, hit by a tree and swept into a river. She was pulled out by villagers and had multiple fractures to both her legs. Her family was unable to afford medical treatment for her, however people from her village helped financially and she was sent to Kathmandu where she had surgery and external fixators applied. She needs nursing care for wound management of the external fixators as well as regular physiotherapy to decrease muscle wasting and after the Dashein festival she will be having bone grafts. She has been at NHEDF for so long she has become like a sister to the nurses. Good luck Parbati – we hope you will be better soon!

 

Patient stories – read Karna’s story

 

NHEDF has a young man called Karna who has been either in hospital or at NHEDF since the earthquake. That is now 29 months! When the earthquake happened he ran out of the building he was in, but a wall collapsed on him and he sustained a badly broken leg. He has endured thirteen surgeries now as each fixator has been removed and then replaced and we hope his surgeries are all over. We thought he would be going home soon ,but he developed an infection in the bone…. Please get well soon Karna.