I am a new member of list. My name is Kassim A. Abdullah. Currently, I am a graduate student at the Department of Mechanical Engineering, Queen's University, Kingston, Canada.

My area or research is in Orthopaedic Biomechanics.

My brother and his wife who live in Dar es Salaam, Tanzania, East Africa, have got a baby boy with Spina Bifida. The baby was born about three months ago when he was immediately diagnosed as having Spina Bifida.

He had the blister (cyst) on the back and also some other symptoms. After being diagnosed as such, the parents were told to take the baby home but nothing else was arranged for the treatment. The father told me that they have also tried to see other Doctors in the city, but the responses they have been getting were very discouraging.

When my brother mentioned to me what he was told by one Doctor, I couldn't stop crying. The Doctor told them that there is nothing they can do but to wait for his "day" to come.

It was this sad narration that incited me to get involved to see if there is anything that can be done to save the life of the boy.

Before that, I had no idea what Spina Bifida meant. First, I started asking about this by writing the post some of you might have seen on the Internet. I got many educative replies, some from the members of this list.

People pointed to me various information available on the Internet. I read these and I read some books from the library. Many thanks to all who took their time to introduce to me on these sources of information.

After some reading, I came to realize that although there is no cure for the spina bifida but there is a treatment for it and so many people born with it have been treated and are living. Having realized that, I started writing e-mails to some few Spina Bifida Organizations.

They wrote back to tell me that they have forwarded my request to their international contacts who could be able to help.

The following day, that is, Thursday November 28, 1996, I got an e-mail from The International Federation for Hydrocephalus and Spina Bifida (IFHSB)

in which they indicated that they may be able to help as much as possible through their contact in Tanzania.

The last time I talked to my brother over the phone was on Thursday December 18, 1996. He told me that some one had already visited them to see the baby and assess the situation.

This was a very important positive step. Personally, I am very grateful to IFHSB and the 'Living with Spina Bifida Website' for their concern on the baby's condition and their promise to help the baby at this critical time. The parents are now generally very optimistic about these efforts which have come to them after they had lost all hope.

When I asked about the condition of the baby, they told me that if you were to see him on his front, you can not know that he has any problem. He is active and acts normally like any other baby. But the blister on the back (cyst) is growing bigger and heavier every day. It is now about six times bigger than it was when he was born. And the most disturbing thing they have noticed recently is that the blister has started to discharge.

I mentioned about this to some more informed people who I communicate with privately, I was told that the discharge from the blister is not unusual and the important thing now is to make sure that the baby does not get infection.

I was also told that, ideally, the baby should have been hospitalized right away and monitored for any signs of infection and treated with antibiotics as a preventive measure. But, that is not the case with my nephew.

When the sign of discharge from the blister was found, he was taken to the hospital, but he was sent back home.

I am not a medical person but I think the Spina Bifida cases in Tanzania are not very common, or at least, not very well addressed. For that, there is no enough information and support. Also, it seems the Hospitals are not very well equipped to deal with cases like these.

I have joined this list so that I can learn more about Spina Bifida and in turn relay the information to my brother's family who do not have the "luxury" of e-mail and other Internet facilities.

Sincerely,

Kassim.