How do you save the life of a child with Sickle Cell disease in Uganda?
This isn’t an easy question to answer, but yet it is a question as Medical Co-ordinator for Revelation Life that has been an important one of late. We have several families in the communities where we work who have children with Sickle Cell.
It is estimated that 33,000 babies in Uganda are born each year with the disease of whom 80% die before celebrating their fifth birthday. Sickle Cell Uganda website.
One family that we are connected with recently needed to seek emergency medical treatment for their daughter with Sickle Cell. This happened only a few weeks ago and we were all concerned that this could be very serious for them and so we supported to find the right care. Thankfully she received treatment just in time and has made a good recovery and returned to her playful self within a matter of days. This might have even been a preventable sickle cell crisis, if the family had known the early warning signs of decline in her health. On having further discussions with the family we have been able to identify that they had a very poor understanding about the condition.
After she had recovered, I took the time to spend a morning talking with her Mama and asked what she knew of the illness. Trying to start from a place of her understanding and to be able to build on that; and also to dispel any cultural beliefs of the illness and other misunderstandings as to what causes it to happen. She had only had people tell her that her daughter had sickle cell and knew that she could become very sick. She knew that making sure that she ate well was a good thing for her. No one had taken the time to really explain the detail of the disease to her or her husband. They had never been told what that would mean on a day-to-day basis, how it might impact her life and how they could take affordable, preventative measures that could help their daughter.
Some of these would become second nature to a family in the West, where: screening would happen automatically; the diagnosis would be explained; time with a counsellor would be arranged and medical care and treatment would be easily available and accessible.
In taking the time to encourage Mama that she is doing a good job looking after her with her limited resources (when the family only have enough food for one of them to eat they make sure that their daughter does), starting with the basics of the condition and then building on that slowly, and then explaining the genetics of the condition, Mama began to have a more complete understanding of Sickle Cell and how it affects her daughter and the family.
We have followed this up by connecting families in our different communities that have the condition in common, and last week we had the first small group meeting. The idea was to bring families together and to start a sickle cell families group, where they can learn and be a support to others that live with the condition. I invited a friend of mine whose son also has Sickle Cell disease and has started to create a network of families of Sickle Cell Children. They had the freedom to talk about their concerns and worries as parents. They now know they are not alone in this and that others also struggle in similar ways as they do. They are thinking more about how this shared experience could help encourage each other and inspire them to educate their communities about it.
Will this save a life? It is certainly a move in the right direction. Educating families and communities has the potential to save lives…
so yes, it could.