MY NAME is Hajati Hadija Nalugya, a mother of Agnes Nanyonjo, a child living with spina bifida.   Nanyonjo was born with spina bifida in 2003 and later developed hydrocephalus. Like any mother, I prepared to have a healthy baby at MulagoHospital. After delivery and regaining my consciousness, I asked for the baby. But no one was ready to tell me what had happened to my baby. The baby was hidden from me for over two days.

The nurses at Mulago hospital later told me that the baby had a wound on the back. I asked whether the baby was injured during delivery. The nurses eventually told me that the baby had a natural wound from God.

I kept wondering what wound could that be but my attendants and nurses could not tell what it was not until another doctor called Ddumba from Mulago Hospital came and explained to me what it was. She explained to me and referred me to CURE children’s hospital in Eastern Uganda.

Now just imagine the pain I went through because this was my first time to see such a baby and with less information about my child’s condition. Everybody feared my baby including nurses.

Spina bifida and hydrocephalus are not new cases in Uganda, but not much has been done to make the people aware of the conditions, how the patients can be handled, where they can be treated, or even how it can be prevented.

When you produce such a child, stigma is all around you, people come to stare at the funny baby: some think you’re bewitched; some medical personnel fear to touch; relatives disown you. If you’re not lucky enough, the husband runs away and you remain all alone with your baby in dilemma.

Ends