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Susan Ndikalaba, a resident of Nabirama village in Busedde Sub-County, Jinja District-Uganda

“That’s My Sad Story! The Triple Tragedy Of Early Motherhood, Widowhood And Hydrocephalus

I am Susan Ndikalaba, a resident of Nabirama village in Busedde Sub-County, Jinja District-Uganda. At the age of 21 I am a mother of 2 children. The oldest is 5 years. The second and youngest, Edinansi Nameya is two years old.

Edinansi has suffered from hydrocephalus since birth!”

Hydrocephalus is a condition that occurs when fluid builds up in the skull and causes the brain to swell. The name literally means “water on the brain.”

Brain damage can occur as a result of the fluid buildup. This can lead to impaired developmental, physical, and intellectual functions. It requires treatment to prevent serious complications.

“As if having a child with hydrocephalus is not challenging enough, on January 30th this year, I lost my husband in a fatal accident. He was a lorry driver. That has left me a single parent without any source of income.

Hydrocephalus can be traumatising. Ednansi was operated upon when she was just 3 months old at the specialist hospital, Cure Hospital in Mbale, close to 150kms from our village. To-date I have made 10 trips to the hospital for review and management as Ednansi’s situation is volatile. Thanks to the management, the size of the head has reduced significantly. But treatment of hydrocephalus is long term and on-going meaning many more trips with their attendant costs.

Susan Ndikalaba holding a baby shares her Sad Story!

Susan Ndikalaba holding a baby shares her Sad Story!

Thanks to the good nature of my late husband some community members have been supportive. A few have sacrificed their meagre resources to assist us access medical care. But gaps still exist. The fares to and from the hospital, the tests and treatment bills have been overwhelming.

I am therefore grateful to the Norwegian visitors who, when they noticed Ednansi’s situation, agreed to make financial contribution to her treatment. This was during the commissioning of the borehole in our village on 14th of September. The visitors provided 100,000, instantly, which enabled me and my mother in law to take Ednansi to Mbale the following day for review.

We have agreed that support will be channeled through Spice of Life which has already made contact with the hospital. The next step is to clear the outstanding hospital bill of slightly over 300,000. The Norwegian visitors have also committed to pick the subsequent bills”. Story narrated to the Executive Director of Spice of Life.

Susan is at the receiving end of Stigma associated with producing a child with hydrocephalus in the community. The issue of re-marrying crosses her mind sometimes but not many men will be courageous enough to marry a “woman who seems to be dogged by bad omen”. As such she says that she has decided to focus on the care of her children.