She wants to lead a normal life just like other children. She wants go to school and play and even get into trouble once in a while… if only her condition would allow.
She is only six years old but she has undergone more than 10 surgical operations, every one of them deeply excruciating.
Glory Kinyua’s father struggles to find words to explain the ordeal her daughter goes through every time the sun rises.
Glory developed a wound in 2009 where had removed an undeveloped twin attached to her torso and lower abdomen after birth.
Francis and his wife had known from scans that they were expecting twins, but during delivery at the Kiengu Maternity Home in Meru County, doctors discovered one of the babies had not developed.
“When I first saw my baby girl, I was shocked and confused. I stared at her for two hours straight without moving an inch or uttering a word. My wife could not speak she was just crying,” said Francis.
Glory had an unformed twin protruding from her buttocks, meaning she may never be able to walk unless it was removed.
The couple were advised to take their baby to Kenyatta National Hospital or Kijabe Hospital to undergo surgery to remove the parasitic twin.
“I remember we arrived at around 3am at the Kenyatta National Hospital a day after she was born on October 10, 2007. The doctors kept pushing the appointments to a later date and I got frustrated because we were spending cold, sleepless nights outside the casualty ward and it was as if they were in no hurry to help us yet we had nowhere to go,” Francis tells The Standard on Sunday.
It was after media intervention that Kijabe Hospital came in and operated on their daughter in December that year.
Following the operation doctors had to make a colostomy to allow the body eliminates waste.
Colostomy is made during surgery to divert a section of the large intestine (colon) through an opening in the abdomen known as a stoma that provides a new path for waste that would usually pass out of the body through the rectum and anus.
A few days later they went back home, filled with hope that Glory will lead a normal life after complete recovery.
However, their happiness was short-lived.
Several months later when Kinyua came back from work, his daughter’s left knee was broken and swollen.
She was taken to hospital and a plaster cast was made for her knee.
“A few days later I realised the plaster had scratched the surgical wound. I had to take her back to hospital for treatment. After healing, she again broke the same leg under her mother’s watch and this time we had to go Kijabe for an operation,” he continues.
Months later her mother forgot to insert the tube to help her urinate, which led to her developing a kidney problem.
Because of the urine build up, she developed Hydronephrosis, the swelling of the kidney.
When Glory was one year old, Rukia could not cope with her deformity and constant need for care. She left and has never come back.
This forced Francis to quit his job to give his daughter his undivided attention.
The gluteal wound she developed in 2009 is yet to heal. It keeps getting deeper by the day. It pains to look at the red open sore from which a bone that has begun to chip is seen.
Because of the large amount of pus oozing from the wound, Glory is forced to wear two diapers, one for the wound and the other to cover the colostomy.
“I have to change her five times a day. I clean the wound, dress it and change the diaper,” he explains after stopping the interview midway to change Glory’s diapers.
Glory is uncomfortable and embarrassed when her dad begins the process in front of people. She is forced to cover her face with hands.
She, however, allows her dad to take off the diaper, clean the wound and skin around the wound using antiseptic and honey.
She looks thin and tired as she hardly eats enough because of lack of appetite.
She rests her head on her father’s chest while holding on to a packet of biscuits lacking vigour or strength to even eat a piece. She hardly moves but occasionally gives a smile.
Everywhere Francis goes, he carries a mobile clinic. A bag containing gloves, water, saline liquid, antiseptic, cotton wool and nasogastric tube, among other things.
“President Uhuru Kenyatta donated money during his visit to Meru in December last year for her operation but the person who received it disappeared with it,” he says.
His daughter’s condition has drained all the energy and life out of him and “sucked him dry”.
He is overwhelmed, stressed, confused, withdrawn and keeps sliding in and out of deep thoughts full of uncertainty, fear, wondering whether he is handling things in the best way.
He is detached from friends and social life as he spends all his time taking care of Glory showering her with all the love, care and attention leaving nothing for himself.
He is unkempt, unlike Glory who is well dressed and her hair neatly made.
Francis is a father who has sacrificed his life for that of her daughter’s.
A unique bond between father and daughter has developed, forged by the care and attention that she receives.
With tears welling in his eyes, Francis says the difficulties are extensive to bear.
“It hurts seeing her sickly and in pain all the time and not being able to take away the pain. I feel helpless for not being able to fulfill her desire to move around, her longing to play and go to school with other children. I had to buy her uniforms to wear even though she doesn’t go to school because she kept asking for it,” says an emotional Kinyua.
His close family has helped him to the point of selling off their 36-acre parcel of land to cater for Glory’s medical expenses.
“I have received financial backing from my parents, family and friends to help with her medical treatment. We have spent more than Sh3 million so far. Without them I do not know what I would have done,” he says.
Following her recent appointment, Glory needs to undergo surgery that requires a deposit of Sh60,000 to be paid upfront and an estimated Sh150,000 for the hospital bill.
“I am desperate. I still have over Sh100,000 in hospital bills to pay. All I want is for my baby girl to undergo an operation, get a wheelchair and education so that she can live a successful, normal life. If it were not for the condition she is in, Glory would be an active, playful and happy child,” he adds while wiping tears off his face.
The gluteal wound has affected Glory’s health significantly both physically and psychologically.
She has grown thin, is weak and hardly has energy even to eat which causes her to faint especially when her body temperature rises.
Paedeatric surgeon Dr Fred Kambuni explains that the wound is infected and therefore bacteria moves through the body affecting her growth.
“Because of the wound, she loses a lot of blood, fluid and protein through the pus that oozes out which explains why she is weak and sickly. The infection is affecting her growth and her appetite and the infection can spread to other body organs,” he says.
He says that to regain her strength, she will need structured feeding which includes large amounts of vitamins and trace elements like selenium, chromium, zinc and iron.
“You cannot just dress the wound. She would need to undergo plastic surgery to do a rotation flap to close the wound,” he explains.
Hydronephrosis is not a disease but a structural condition that typically occurs when one kidney becomes swollen due to the failure of normal drainage of urine from the kidney to the bladder.