Images and stories from Cox’s Bazar, Bangladesh
The stories and images below have been shared (with patient or parental permission) by Dr Farzana Khan, the lead palliative care physician in Cox’s Bazar and close collaborator of PalCHASE. Fasiuddin Khan Research Foundation is funding a community palliative care project there (find out more).
The work of Dr Khan and her team of community palliative care assistants is sorely needed. It is also nothing short of inspirational and humbling. The resource limitations are severe. You can support a crowd-funding campaign here.
Patients we have supported at the end of their lives
Aurora*, her story as told by Dr Khan: To relieve her pain, which was severe, we started Tramadol, which is on step 2 of the WHO analgesic ladder (weak opioid). Her pain didn’t go away. So I prescribed and bought from Dhaka oral morphine tablets, the golden drug for severe pain. Her pain subsided. We could serve her for two months before she’d rested in peace.
She and her husband had left their two sons, 8 and 12, back home in Myanmar. We haven’t spoken why that was the best thing to do. Perhaps they felt that the risks of life as refugees, before they could build the better and safer life they were searching, were too huge to take with the kids. Whatever the reasons, having her children so far away must have worsened Aurora’s physical pain too.
A month before she died, we discussed with her family whether they should arrange for her and the children to meet. The family agreed to do so.
But Aurora didn’t want to go back. We would never know the full story, but to us she said that the palliative care team were taking such good care of her. She could not expect that in Myanmar. Fifteen days later, she suddenly changed her mind. She decided to go back to her country.
The family had arranged a late night boat journey for her. We sent her off with morphine tablets and other medicines. She reached her home. She lived for a further seven days after that. Her family told us later that she was in pain at the very end. But she was very happy to have seen her children.
* Aurora is a pseudonym. You probably know that “Aurora” stands for the polar lights, and she is now a star in the night sky, having recently passed away. In turn, “aural” means “related to the ear” and you can see the serious neck malignancy she was suffering from.
Patients we have provided palliative care to, in cases of cancer and other life-limiting illnesses
The story of Mojibor is also in the “Neglected Suffering” report (where he appears as Mojidor, correct spelling as here):
Mojibor is a 10-year old Rohingya boy with bone cancer. When he was diagnosed at the camp field hospital, Mojibor and his mother cried all night fearing he would soon die. Mojibor has two little sisters. His father is missing.
We found Mojibor in a tent lying on a mat, unable to move or walk because of his pain. In the past, Mojibor was a typical football-loving boy. His nickname was ‘bhuissya’, meaning ‘buffalo’.
We started pain treatment, and now Mojibor can walk and even smiles a little. Palliative care has improved the quality of Mojibor’s life and given much needed comfort to his family. We only used analgesic (WHO step 1), which is available in the camps.
Nov 18th update by Dr Khan: Mojibor is now living with his paternal aunt at Chokoria, another district of Cox’s Bazar. He is going to school.
Her story as told by Dr Khan: Golajan had a huge breast tumour. It was operated in the Malaysian Field Hospital. We tried to get a biopsy report on it, but we couldn’t. I wish to believe the tumour was benign and the surgery has made her disease-free.
Before the surgery, she had severe hypertension. After it, she has become a satisfied, happy person.
Golajan lives with her husband and adopted daughter. The child is her niece. Her brother has more than 12 children, so she persuaded her brother and sister-in-law to let her adopt one of their children. They agreed.
Little boy in 3rd photo, story as told by Dr Khan: We taught the parents of this little boy how to take care of his wound and back. We would also give them food, like eggs and milk. His wound has now healed and his mother has learned how to keep him dry. That made a huge difference to the quality of life of both the baby and his parents.
Little boy in 4th photo, story as told by Dr Khan: Our palliative care assistants have been following up this baby regularly. Some of the support we are giving is as simple as providing eggs and milk.
Patients who have palliative, but also potentially curative, care needs we cannot meet
Shohida Akter and Kefayet Ullah
Their story as told by Dr Khan: This little girl, Shohida Akter, loves to read. She cannot stand or walk, but manages to go to school with the help of her mother and friends. If her mother tells her that she cannot go, she starts crying. She would roll herself over on ground so as to reach the school. I was amazed how good and clear her handwriting was.
We found Shohida five months back. She has a congenital disease, maybe myopathy or a neurological condition. I’m not certain. She had moderate pain all over her body. The pain subsided after we treated it. Her 18-year old brother, Kefayet Ullah, has the same disease. It had started slowly. His condition has remained the same for the last few years.
Yesterday (16 Nov) one of our palliative care assistants, Akram, went to visit Shohida. She had a request. “Please, tell madam that I don’t have any pain now. The only thing is I can’t move, stand or walk. Can she do something for me?”
I don’t know how to treat her. I wish an expert could help her.
Her story as told by Dr Khan: When we met Sanzida, she couldn’t move her neck and body due to rigid muscles. She can sit and talk now. Sometimes she tries to walk, but without success. If she had regular physiotherapy support, maybe she could do that. But our human resource is only two palliative care assistants, and they are already doing their best. I wish I could help her more.
Her story as told by Dr Khan: Sereta Jannat was born in the Rohingya camp, at the hospital of Médecins Sans Frontières. Three days old, she was referred to us for palliative care. This was the first baby with omphalocele I have ever seen. I found, through a Google search, that the condition had a positive outcome if a number of serial surgical procedures were carried out.
At first, I was a little stressed about what to do with this baby! But as a person with infinite optimism, I decided to contact Dr Steve of Malumghat Hospital in Chakoria. This is a large Christian charity hospital. Dr Steve, the Chief Surgeon, wanted to start a surgical exploration. He was, in fact, surprised that the palliative care team had contacted him. On the day Sereta Jannat was born, he had already advised MSF staff and promised to do a surgical exploration.
We did not succeed in sending the baby to Malumghat Hospital. Difficulties of obtaining local government permissions, transport, finances … were too many to overcome in the time we had. Sereta Jannat lived for two months.
Her story as told by Dr Khan: I continue to be surprised that children with hormonal deficiency diseases are not given any medication. One of them is Nur Saher, 3 years old.
She has been neglected as a disabled patient throughout her life, until I saw her and diagnosed her with child hypothyroidism. She had a large tongue, huge abdomen with abdominal hernia, could not move … We’ve been treating her with Tab Thyroxine, which she would probably need throughout her life. The first picture is from when we first met her. The second is from yesterday (11 November 18). She has started walking a little!
Faisal is another patient with hypothyroidism. In the photos above she is before and after the treatment we’ve given her.
Patients we have lost touch with
The story as told by Dr Khan (first photo): This baby was operated a year ago for hernia at the field hospital of an NGO. Following the operation, this unfortunate little one has got continuous dribbling of urine. I had contacted Dr Steve, the Chief Surgeon of of Malumghat Hospital in Chakoria, for possible surgical options. He was interested, but we couldn’t send this baby due to many barriers. We have lost contact.