Following enormous complaints from different media regarding the death of a 12 year innocent girl Jessica Ishimwe Igihozo igihe.com has learnt that she died a rare genetic lung disorder called immotile Cilia Syndrome.
The findings from an investigation carried out has ascertained that Jessica Ishimwe had suffered from Primary Ciliary Dyskinesia(PCD).
Primary Ciliary Dyskinesia (PCD) also known as Immotile Cilia Syndrome is a rare recessive genetic lung disorder that causes a defect in the action of the tiny hair-like structures (cilia) lining in the respiratory area supposed to move mucus out of airways.
The main consequence of impaired ciliary function is reduced or absent mucus clearance from the lungs, hence susceptible to chronic recurrent respiratory infections.
Normally, cilia beat 7 to 22 times per second, and any impairment can result in poor mucociliary clearance, with subsequent upper and lower respiratory infection.
It has been reported that there is no cure for PCD, but if the disease is monitored closely and treatment begins early, people can live productive lives.
According to one independent doctor who did not want to publish his name, Jessica Ishimwe’s case was identified late and what they had to do was to prevent farther possible infections by providing oxygen 24 hours.
“It was costly to provide the twenty four hours oxygen I believe of which I think the hospital would not have opted for and that was actually the only option because the sickness is incurable, however I don’t know the details of flying and not flying possibilities for advanced hospitals abroad,” the doctor said on conditions of anonymity.
The central hospital(CHUK)’s Director Dr Theobald Hategekimana said flying Jessica Ishimwe would cost her life before the plane takes off due to atmospheric pressure when the plane takes off.
In an interview with igihe.com Dr Hategikimana, the only option was palliative treatment other than curative treatment- adding; “Jessica’s sickness was a genetic complex and there is no way doctors would remove a damaged gene causing the sickness”
“We did what we can but her sickness was very complicated than what people think even her transfer would cause more harm than good due to atmospheric pressure when the airplane is taking off which would suddenly affect her breathing and probably blocking her breathing,” Hategikimana said.
Controversies
The little innocent girl, whose plight came in spotlight early last year, died Thursday November 10, 2011 very early in the morning after enduring pain for nearly two years.
By the time the innocent girl was admitted at Kigali Central University Hospital (CHUK), local media begun a fundraising campaign for her to be transferred to advanced hospitals in cardiotherapy that would probably save her life.
The generous Rwandans managed to get the required amount for her transfer but she was not transferred reason being complexity of her sickness, according to group of doctors that followed her closely.
Despite Doctors’ explanations of the complexity of her sickness, lots of refuting views emerged from the public including her mother Bernadette Murekatete who almost entirely believed that her child would have been better if flown abroad.
In earlier interview with her mother prior her child’s tragedy, Murekatete said that there was one doctor who had told her that Jessica Ishimwe could be treated if went for advanced hospitals in Canada, UK, Belgium and France among others.
“There is a friend who is a doctor who told me that my daughter would be treated if flown outside to advanced hospitals and actually after consultations they asked me to give them a medical report but CHUK refused to provide it,” the mother of the deceased child said last year.
Meanwhile the recent science findings in July this year according to science today website, there are Artificial Cilia with hope to open new nanotech possibilities and said to be one step closer to learning how Cilia movement is coordinated.
According the website, due to the importance of ciliary functions for health, there is great interest in understanding the mechanism that controls the cilias’ beating patterns. But learning exactly how cilia movement is coordinated has been challenging.
That may be beginning to change as a result of the creation, by a team of Brandeis researchers, of artificial cilia-like structures that dramatically offers a new approach for cilia study.
In a recent paper published in the journal Science, Associate Professor of Physics Zvonimir Dogic and colleagues present the first example of a simple microscopic system that self-organizes to produce cilia-like beating patterns.
“We’ve shown that there is a new approach toward studying the beating,” says Dogic. “Instead of deconstructing the fully functioning structure, we can start building complexity from the ground up.”
However this sickness is not popular despite its complexity. It is reported that approximately 25,000 children and adults have sickness -PCD in the United States, but only 400 know it for example.
Most people have never heard of PCD including some doctors because it’s rare. Most doctors have only vague recollections of PCD from medical school and are not up to date on the realities of the disease.
The 12-year old Jessica Ishimwe Igihozo was laid to rest last Friday, as hundreds of relatives and sympathizers accompanied her family at Rusororo Cemetry, Gasabo.
Before taken to Rusororo cemetery, Jessica Ishimwe Igihozo was first taken to Inkuru Nziza Church in the city center where her last funeral mass was conducted.
May her soul rest in eternal peace.
Ends
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