By the age of 12, Glory Kinya, now 14, had undergone 13 surgeries. It all started in October 9, 2007, at noon. An elated Mr Francis Kinyua Manyara, 36, was set to become a dad.
At 6pm, after receiving a distress call, he would rush to his wife Rukia Gacheri, who had been admitted to the labour ward at Kiengu Maternity Hospital in Maua, Igembe Central.
The security guard who was born and bred in Meru County had no insurance cover at the time, and telecoms firm Safaricom stepped in and settled the bill.
“We were going to have twins for our first pregnancy, almost a year after I had married my then lovely girlfriend Rukia. Our entire family and village waited patiently,” he says.
The delivery took much longer than the nurses had told him it would. When the twins arrived, they were conjoined on the lower abdomen. Doctors called them pygopagus twins.
“One of the twins was, however, too weak and so we were told to go to Kenyatta National Hospital or to AIC Kijabe Hospital for an expert approach to our case,” he said.
According to experts at the All India Institute of Medical Sciences in New Delhi, conjoined twins present the most fascinating human congenital anomaly, with an incidence of between 1:50,000 and 1:1,200,000 births worldwide, with a higher incidence in Southwest Asia and Africa in the range of 1:14,000 – 1:25,000.
Pygopagus conjoined twins have a rare developmental defect with shared gluteal region and with the fusion of sacrum, facing away from each other. They have an incidence of six per cent among conjoined twins.
Prenatal scanning makes an early diagnosis of the type of conjoined twins and determines the outcome of the pregnancy.
After birth, surgical intervention can be determined according to the site of fusion and the organs shared.
Pygopagus twin management involves separation and reconstruction of gastrointestinal, genitourinary and reproductive tracts, and the outcome of survival depends on the organs shared.
Mr Kinyua and his wife would then proceed to KNH, where they were put on a waiting list up to December.
“At KNH we were told to pay Sh100,000 upfront and go back in January 2008, after almost three months because there were no beds available for admission.
“Considering we come from a humble background and have no money, we would merge hospital seats in the waiting area and spend the night there and it reached a point I suffered a mental breakdown due to the frustrations and stress, because our twins were in so much pain, we decided to go to AIC Kijabe Hospital,” Mr Kinyua discloses.
At Kijabe, a team of surgeons took eight hours to separate the twins.
“They prepared us every step of the way and told us the parasitic twin would not survive, and that my daughter Glory was going to have spina bifida (a birth defect that occurs when the spine and spinal cord don't form properly) and never walk,” says the father.
As she did not have an opening to pass stool, the surviving twin underwent a colostomy. It is a procedure that involved shortening her colon then removing the damaged part and creating an opening in the abdominal wall, through which waste is expelled into a bag.
“The above-named patient was born as a conjoined twin (pygopagus). She subsequently developed paraplegia (paralysis of the leg and lower body typically caused by spinal injury or disease) with urinary and faecal incontinence. A colostomy was fixed. She is fully dependent and needs sanitary support of both the colostomy bags and urinary diapers constantly,” an official report from the Nyambene Sub-County Hospital, where she has been receiving treatment reads in part.
In a month, Mr Kinyua says, his daughter uses diapers worth Sh7,000 and colostomy bags that cost Sh60,000.
“As of April 2020, her medical bills at KNH private wing, despite having a National Hospital Insurance Fund (NHIF) cover, accumulated to Sh2,055,000. I am supposed to pay Kijabe Hospital Sh258,000, among other bills that I haven’t settled.
“I have had to sell 40 acres of the ancestral land I inherited from my father to clear most of the bills and now I am even worried that there will be no land left to bury me when I die because the plastic surgeon at KNH who has been handling our case tells us that we need to take her to India for surgery, which needs Sh5 million,” Mr Kinyua says.
The girl has developed further complications around the incision points where ‘separation surgery’ was done, as well as on her abdomen, which have become septic wounds.
“My child is a valiant fighter who is in so much pain, it keeps me awake at night because it’s really frustrating that I am unable to do anything to help her,” concludes the father.