On my recent visit to Central Asia I was touched by meeting these two ladies who both gave birth to children with Spina Bifida. Listening to their painful experiences I have been drawn to wanting to help them set up a support group for other parents who have children born with Spina Bifida and/or Hydrocephaly. Parvina said, “During my pregnancy doctors did not tell me that I was expecting a baby with Spina Bifida. When my son was born, it was a big shock for me, my husband and our extended family. We have never seen such diseases and didn’t know what to do and where to go for help. I was depressed, grieved a lot and feared for future. At the hospital I have met 5 families who had children with Spina Bifida and Hydrocephaly. When I talked to them, I’ve learnt that they don’t know how to care for their child. Since that time, I have a big desire in my heart to help such families and to let them know that they aren’t alone in their pain.”
I have been told that there are about 240 children born each year with neural tube defects in this country and most parents have no information of what to do and are left alone to cope. In many cases the husbands leave their wives because they think it is their wife’s fault.
Tanya and Parvina would like to set up a support group to help parents with children born with Spina Bifida. they would also like to translate some simple leaflets into the local language for people to read. Nearly all the information about Spina bifida and hydrocephaly is written in English.
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