Papier Mache Toys

At CRP, I saw the specialized toys that we being used to improve children's coordination.  Most of the toys are made at CRP out of simple materials.  In fact most were made out of papier mache or recycled materials.  This helps keep costs low, but also reflects the reality that it is very difficult to buy any good quality toys in Bangladesh.

Toy workshop which uses recycled paper and bottles. The pop bottle lids are to help kids practice twisting caps.

Custom made chair for child with Cerebral Palsy, made of paper and cardboard!

Low Tech Solutions for Bangladesh

As part of my visit to CRP and I was interested to see the equipment that the centre is making for phsyio and rehabilitation purposes.  This type of equipment is often very expensive in Canada, but to keep costs low, CRP makes almost everything themselves.

They have a prosthetics department which custom makes limbs and splints for those who have lost a limb.  At BSMMU there are three children who are receiving treatment for bone tumours.  Each of these children will need to have a leg amputation to cure their cancer.  Afterwards, I hope to send them CRP for a high quality, low cost prosthesis.  

Some examples of what can be made at CRP.

Make in Bangladesh prosthetic legs. Much cheaper than those manufactured in developed countries.

Prothetic technicians working on leg splints.

Unfortunately, one of the patients with a bone tumour is a 10 year old girl, her parents are willing to agree to  an amputation as part of her treatment, but the rest of the family is strongly discouraging the parents from this, so the parents have decided for her not to have the amputation.  This is really sad, as without an amputation she can't be cured.  Currently she is removing chemotherapy to shrink her tumour, which is in the thigh bone, but unless the tumour is removed after the next round of chemotherapy then it will spread and she will die of the cancer. 

With one of the other doctors, I have had many long discussion with her parents about the need for the surgery; they understand that she will die without, however, because she is a girl, they are worried that with this disability she won't be able to marry.  Specifically they are worried that they won't be able to find anyone willing to marry her if she only has one leg.  If she can't marry, they don't see the point in saving her life.  

It's tragic that it comes down to this, but there is no child protection agency here who could say to the parents, you must allow your daughter to have an amputation as her life is more valuable than whether she can be married.  Additionally, the parents don't seem to understand that with a good quality prosthesis from CRP, their daughter will be able to do the regular activities that she needs to do as an adult: walk, cook, and look after her children. This goes back to what I was saying in my previous post about the stigma of disability. The parents have told me that they don't want her to lay in bed for the rest of her life, despite me explaining that she won't be bed bound, but will be able to walk with the prosthesis.

I'm still working with this family and I'm hoping to convince them to go on a tour of CRP to see what is possible.  Perhaps this will convince them, more than my words, that she could live a fulfilling adult life.  

The other thing that makes this situation really difficult is that I am pretty certain that with chemo and then an amputation followed by more chemo she can be cured.  But in reality I don't have enough tests and scans to be 100% certain that she doesn't have any spread of the tumour to her lungs or other areas of her body. If the tumour has spread, then even with an amputation she can't be cured. So we may work really hard and convince the parents to get the amputation and then she may still die.  If the parents delay the decision to amputate, it may also be too late as the longer we wait the more likely the tumour is to spread.

I will continue to keep you updated on this story....

Visit to the Centre for the Rehabilitation of the Paralyzed

Today I visited the Centre for the Rehabilitation of the Paralyzed (CRP), the only hospital in Bangladesh which specializes in treating people with spinal cord injuries and replacement limbs.  I visited with Gwen, the volunteer physiotherapist working with me at BSMMU, as well as an American teacher, Alicia.

CRP has a workshop where they make all of the rehabilitation and physiotherapy equipment that they need.

Gwen and I were specifically interested in looking at the types of walkers which CRP could make for us to use on the cancer ward.  Due to prolonged hospitalizations, children with cancer at BSMMU often get very weak muscles and have trouble walking. Some of the medications which they receive as part of their cancer treatment also cause muscle atrophy or wasting which may contribute to their weakness.  Unfortunately, their parents are very hesitant to encourage their child to continue to walk and move around while in hospital as they don't understand that this will actually help the child to stay well and avoid becoming extremely weak.  Due to immobility, the children are also at higher risk of developing pneumonia, which can be deadly.

Made in Bangladesh child-sized walker.  This would be perfect for BSMMU.  

Locally made rocking horse, which will help with balance and coordination.

Therapists at CRP working with children with Cerebral Palsy.  One of the few places in Bangladesh to treat children with this problem.

CRP is an amazing place!  It is not just a hospital or clinic, but a community.  There is a retraining centre to help those who have had a spinal cord injury learn skills to help them work again.  There is an amazing school which integrates children with cerebral palsy into the mainstream classrooms.

Integrating those with disabilities is a very unusual idea in Bangladesh as those with disabilities are often completely shunned from society and the individual is often blamed for their disability. At CRP there is a class given for family members of children with cerebral palsy to educate the relatives that this problem is not the mother's fault or due to anything that the family has done.  (The mother is often accused of causing these problems in the child, or the family blames evil spirits or ghosts)  There is so much stigma and ignorance about disability in Bangladesh, but CRP is working to change this.

The cost of treatment at CRP is adjusted based on what the family can afford. The Canada Fund for Local Initiatives, which Dan administers was able to support the work of CRP this year.  The money they gave went directly to helping those who were injured in the Rana Plaza factory collapse.  I saw a class of Rana Plaza survivors who were receiving training at CRP to become tailors after recovering from their injuries.

Rana Plaza survivors get re-trained to become tailors after recovering from their injuries at CRP.

Play equipment at the integrated school.

This article talks more about CRP in relation to the Rana Plaza factory collapse:
http://m.theglobeandmail.com/report-on-business/spinning-tragedy-the-true-cost-of-a-t-shirt/article14849193/?service=mobile#!/

Nutrition

A recent study which has been done at BSMMU showed that 60% of the children are severely malnourished at the time when they are diagnosed with cancer.  This is most likely due to a number of factors; the overall rate of malnutrition in children in Bangladesh is 40%.  Children with cancer who get treated at BSMMU represent families of very low socio-economic status, who probably have less ability to feed their child adequate food or provide food which is rich in nutrients.  Thirdly having cancer causes children to become malnourished.

Unfortunately, being malnourished means that a child has a greater chance of getting a serious infection while being treated for cancer and they are more likely to die.  I have been hoping to address this issue thorough a nutritional rehabilitation project to give high calorie feedings to all malnourished children at the start of cancer treatment; however, there were no appropriate feeding products available in Bangladesh.

Finally I have made contact with a local business owner who manufactures high quality, high energy biscuits and supplements.  His company has developed a product similar to 'Plumpy Nut' which is a RUTF (Ready to Use Therapeutic Food) with a chickpea base which is more acceptable in Bangladesh, as peanuts are not a common food.

For more about Plumpy Nut, check out http://en.wikipedia.org/wiki/Plumpy'nut. Basically it's a peanut based product that requires no mixing or refrigeration and can be used to re-feed malnourished children.  It provides all the nutrients which your body needs.

Here are some photos of the Bangladesh product which I have been given.  I'm excited to start using it to treat the malnourished kids with cancer!

2 month supply of high energy biscuits for the welcome packs

Glucose Biscuits (written in Bengali), not sure where the fruit comes in...

92g of goodness = 500 kcal

There are actually 2 options, one with a chickpea base and the other with a rice/lentil base.  

Bengali New Year

Happy Bengali New Year!  To celebrate the new year, Dan and I went to BSMMU to give out gifts of toys and clothing which had been donated to the recent toy drive.  We were joined by one of the newer play therapy volunteers, Karen.

Wearing a Happy Canada Day T-shirt!

New shirt and bag with art supplies for Shishir who loves to draw.  He has a slightly more rare type of leukaemia (AML).

This is the first time that I've seen this patient smile! Mom also looks happier than before.  She as leukaemia, the most common type of cancer in childhood.

This child would not be consoled by toys until the nurse backed away from the patient. He was probably worried that he would be getting poked.

Hand Hygiene

Children with cancer in developed countries have a 1-3% chance of dying of infection.  Children in developing countries have at least 25% chance of dying with they contract infection.  This is due to delay in treatment of infection in the developing world.  In Canada, parents of children with cancer are told to bring their child to the hospital immediately if the child develops a fever; however, in Bangladesh, parents often wait and observe their child at home for a day or two before bringing them to the hospital.  This delay means that the child is much sicker by the time they arrive at the hospital and the infection may be so advanced that it is not possible to cure the infection, even with strong antibiotics.

In Bangladesh, the most common cause of death in children with cancer is severe overwhelming infection (this is often called sepsis).  Many of these infections are acquired in the hospital due to poor infection control practices.  I think that this recently published article illustrates the scope of the problem in Bangladesh (not that developed countries are perfect, typically hand hygiene rates are 20-30%),

There were 32 episodes of hand washing when there should have been 3373!!!  The ward where I am working has one sink with soap as well as 10 hand sanitizer dispensers, but these things don't make doctors and nurses actually wash their hands!  What actually works?  A combination of lots of education and reminders as well as shaming people. 

What about making doctors think more about the harm they may be doing their patients?  This study seems to suggest that it may help:

http://well.blogs.nytimes.com/2011/09/01/getting-doctors-to-wash-their-hands/?_php=true&_type=blogs&_r=0

Or how about this idea, the Big Brother approach:

http://www.nytimes.com/2013/05/29/nyregion/hospitals-struggle-to-get-workers-to-wash-their-hands.html?_r=0

Do you have any ideas for how to improve hand hygiene at BSMMU?  Send them to me?  Want to design a poster or badge, that would be great.  I will get it translated in to Bengali.  Want to design an information sheet for parents telling them how and when to wash their hands, that would also be great!