Friday, 01 November 2024

Bladder exstrophy: Surgeons save baby born with rare disorder

Kenyan doctors have successfully operated on a young girl to correct a health condition said to affect only one in six million babies across the world.

The delicate operation is the first step to restore the two and a half year old girl, born with the rare genital defect, to normal life.

 Gloria Mukeira has bladder exstrophy, a complex condition where the bladder is exposed outside of her body and she cannot
control its function. Because of this, the little girl is prone frequently to bladder infections and it is difficult for her to interact with other children

"Gloria’s urinary bladder is basically opened at the outside, and so urine just leaks out and she has no way to control it,” says Dr Eric Hansen, the head of pediatrics surgery at the Kijabe Hospital, where Gloria is admitted.The rare surgery performed last week is the first of a multi-stage approach as more operations are required to fully reconstruct the baby's genitalia as well as the bladder.

“But it’s a lifelong condition. Because of the condition, Gloria also has a bit of pelvic problems whereby the muscles don’t work very
well because part of the rectum protrudes out, and we are trying to prevent that,” Dr Hansen explains. This is a complex problem all over
the world. That’s why we are cooperating with the mother because it’s not a one-off job for it requires many procedures and longtime
follow-ups."

He says newborns may not require an immediate operation. "It’s easier for children to hide it, something which becomes impossible when the
children start schooling and can’t wear pampers anymore. During this stage, they smell and their urine uncontrollable. You can live
with it, but it’s not easy. I have seen patients in their 20s,”he says.

Dr Hansen and fellow pediatric Dr Ken Muma are optimistic that Gloria will  regain full health, genital dryness and friendliness.
“Currently she needs two or three operations but she may need more. Many of these kids require even up to 12 procedures. There are even
nurses in this hospital who have been treated of the disorder, and you can’t recognise they had had it,” he says.

Gloria's mother, Roseanne Sitialo, says her daughter had the first operation in June last year and was admitted for six weeks.

The first operation didn’t cure Gloria fully, and she was brought to Kijabe in January. “The doctors checked her and recommend monthly clinics. Some medication was administered to her, and the doctors said she will be operated a second time if it wouldn’t have worked.”

Roseanne says she was ridiculed before Gloria’s current operation. “People would say that Gloria wouldn’t survive the operation; which made feel bad. But I thank God the doctors handed back my child in one piece.”

She says her family also shunned her. “My family segregated me because they have never gotten a child such as Gloria. Nobody wanted to touch her while an infant. My husband’s people also don’t help.”

“I even left my two other children, with neighbours. My husband ran away from home when he learnt of Gloria’s huge medical bill,” she
says. 

Safaricom Foundation has been covering little Gloria's medical bills at Kijabe. Roseanne came to know about the Foundation through a medical camp the foundation had sponsored near her home in Mirema. Gloria's condition also frightens her two sons aged 10 and eight.

“To be honest, they are usually not busy with Gloria when I leave her with them sometimes. When Gloria starts bleeding and crying out of pain, Abel and Patrick are forced to abandon her due to fright,” she says. Roseanne has advice for parents with children like hers. “Some parents torment or even
kill their sick children. I would like to advise them not to lose hope. God has a reason to give them such a child.”

Roseanne says she deserted one of her best friends who advised her to kill the baby. "Sometimes you get to a point that you lose hope," the friend had told her, urging Roseanne to end the baby's life. But she kept on praying.

She says medical expenses have been the biggest problem and sometimes she had no money  for transport.

All along the interview, the cheerful Gloria has been happily enjoying herself in the swing, nibbling at her fingers. Her mother has been
relaxed in an opposite swing. After the interview, Gloria runs all along, laughing and uttering unrecognizable words.

- See more at: http://www.the-star.co.ke/news/surgeons-save-baby-born-rare-disorder#sthash.gFeWbVxH.dpuf

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