Prune Belly Syndrome my worst enemy

My son’s illness changed my life a lot.

As the tenth child of a family of 13 children, I am one of the last children in my family. My father, who was over 40 years old than me, was already old when I got my baccalaureate. My university studies were very difficult. My retired father could no longer help me.

I made up for small business and studies to get by. I was recruited at the end of my studies in an NGO “PLan INternational” for the defense of children’s rights through Radio training and radio Broadcast.

When I got married, I quickly fell pregnant. Which changed my life forever. At three months pregnant, the gynecologist told me that my baby had a malformation. This is how my ordeal began. The child’s father quickly abandoned me to my fate, alone, sick, traumatized. When my child was born with neonatal jaundice, we were separated for more than two weeks for intensive care.

When he left the hospital, we were referred to a university hospital for treatment and follow-up. I lost my job with the child’s appointments.  The amount released by the NGO for the 3 sick children of the staff had been distributed to all the restructured staff. My share of this amount was 250 US Dollars, which was not even enough to do a renal scan.

My husband abandoned me permanently because of the child’s condition. I experienced hunger and accepted debilitating jobs for the survival of my child who must have a quarterly check-up for his malformation taking into account renal ultrasound, cytobacteriological examination of urine plus antibiogram, blood test and intravenous urography. My friends all dumped me and no longer saw me. In my country, when a child is born with a malformation, he and his mother are stigmatized, some push us to abandon him, others treat them as ghosts. I would like to one day share my story by writing a book to evacuate the suffering from my mind, relieve my heart and raise awareness among people for solidarity around patients with rare diseases.

By Ndeye Khewe Mbaye