Baby Fidelis Muthoni Kinuthia hit the news headlines in 2015 after a man spearheading a fundraising in aid of her surgery allegedly vanished with Sh. 2.8 million collected by well-wishers.
This would throw her parents into disarray since the operation that was to take place in Canada had already been scheduled, but the person entrusted with the cash had vanished into thin air.
President Uhuru Kenyatta and Murang’a Governor Mwangi Wa Iria provided a life line by donating towards her travel and six months accommodation in Canada, where a corrective head surgery was to take place.
The girl was diagnosed with encephalocele; a neural tube disorder that causes brain to protrude under the membrane of the head.
The girl’s parents, Kenneth Kinuthia and Martha Wambui, who hail from Saba Saba, Murang’a County, have conveyed their gratitude to President Uhuru Kenyatta, Governor Mwangi Wa Iria, the media fraternity and people of good will who contributed towards giving their daughter a new lease of life.
“It would have been our wish to go to the State House and express our gratitude personally to the president for coming to our aid when the world was crumbling on us,” said the Kinuthia’s adding that their daughter could have missed the lifesaving opportunity. Murang’a County Governor Wa Iria paid for their accommodation and upkeep in Canada for six months.
The father of two noted that the media played a great role in highlighting his plight when his own cousin, Joseph Wanjau, who also owned a charitable foundation in Makuyu, Murang’a County, vanished with the money donated by well-wishers.
Wanjau, who came under severe public criticism at the time is said to have collected Sh. 2.8 million from the public through a Paybill number, widely circulated in the media. Investigation reports then showed that he withdrew the money in installments cleaning the account.
The accused was later charged in court but the case has dragged since December 2015, having been postponed for seven times.
“Despite the initial successful operation, the family’s agony is still far from over. She needs to go back to Canada for another surgery. She was supposed to have stayed until all the procedures were completed but they had depleted finances,” Kinuthia revealed.
He said they have been taking the girl for follow up clinics at Kenyatta National Hospital but it reached a moment they could no longer afford the bills, adding that another problem presented itself in the girl’s nose where an abnormal growth was detected.
The father says that if only the ongoing case could be determined and the accused made to refund the money, then they will be in a position to take her back for treatment.
According to Centers for Disease Control and Prevention (CDC), encephalocele is a rare type of birth defect of the neural tube that affects the brain. It happens when the neural tube does not close completely during pregnancy, hence an opening along the center of the skull from the nose to the back of the neck, or at the top of the head, or between the forehead and the nose.
For Fidelis, the opening was between the forehead and the nose, which manifested itself as a huge swelling on the forehead.
The anomaly is corrected through a surgery and requires long-term treatment that may include multiple surgeries.
A study by Jane N. Githuku et al. published in 2014 Pan African Medical Journal titled: Assessing the prevalence of spinal bifida and encephalocele in a Kenyan hospital from 2005-2010: implications for a neural tube defects surveillance system; indicated that out of 1,296 clinical diagnosis of a neural tube defects, 88 were encephalocele. Others included spinal bifida and anencephaly.
The study used administrative data from AIC Kijabe Hospital, a facility providing specialized neurologic care for people affected with disorders such as encephalocele and spinal bifida.
Although the exact underlying cause of encephalocele in not known, most researchers believe that both genetic and environmental factors are responsible. CDC estimates that about 365 babies in the United States are born with an encephalocele. -KNA