In 2005, when Moses Kayongo got married, genotype was not an issue simply because it was considered unimportant as far as you had no background of sickle cell anaemia in your family. In short, sickle cell carrier status was overlooked if you looked hale and hearty – a mistake.
Kayongo attended universities in the USA and the Philippines, where he obtained PhD in Public Health. He is currently a lecturer at the University of Lay Adventists of Kigali (UNILAK), Rwanda.
One of his hobbies is cooking for his children, Abigail, 12 and Anabel, 10 (the latter is with sickle cell anaemia). Kayongo recalls the bumpy road that took him to battling to save the life of that child with sickle cell.
Precursor to Diagnosis
Anabel was born in the Philippines, she started getting sick at 3 months old and we never knew what was happening. Neither did the doctors because sickle cell is not a common condition in the country. I had to put aside many aspects of life like my social life and some other irrelevant pursuits to attend to my daughter. We never knew what trouble each week will usher in.
Anabel was diagnosed with sickle cell anaemia at 5 years of age. Six months after diagnosis, Anabel went through several hospitalizations, blood transfusions and initially suffered two strokes as a result of her condition. In spite of maintaining her on hydroxyurea, she suffered two other massive strokes which affected her speech and right side. A doppler ultrasound scan to ascertain further risks of stroke showed that her risk for subsequent strokes would lead to serious complications that could affect further her psychomotor abilities (speech, mobility difficulty, inability to feed and use her hand properly, etc).
SCD needs to be incorporated into the medical training curriculum worldwide … The ever-increasing rate at which people migrate to various destinations across the globe calls for a universal approach to sickle cell awareness.Moses Kayongo
Four strokes in succession
At 5 years and 10 months, Anabel had her first stroke which affected her mouth. One week later she got her second stroke, which affected her left hand and leg.
Two months later she suffered her third stroke. Fluid flowed from her mouth. She couldn’t swallow any more. The fourth stroke affected her right side. The crises she had as I rushed her to hospital for transfusion after the fourth stroke was so strong that when the emergency doctor injected morphine, she went into coma.
The most memorable crisis is the second one in which she suffered a stroke. She was at school when her teachers called us to come pick her. In Rwanda where we live and work, this condition is not so common; so when it happened, we had no doctor that we knew that could help to respond to it. We rushed her to the Uganda Bus Station, paid for a special seat on the bus, and kept her on water every 15 minutes. As we drove overnight we pleaded with the bus driver to stop every 2 hrs for Anabel to pee.
It was 3am when we reached the border health centre, Mbarara Hospital. At the emergency there was no blood for transfusion. So, we took another bus to another hospital about 4 hours away. Similarly at Masaka Hospital, there was no blood. We continued to the main city, where the child waited 6 hours to receive blood.
No match for bone marrow transplant
A bone marrow transplant was imperative to rid my daughter of further complications from sickle cell.
My wife and I were a 50% match while the only sibling was just 10%. Searches for a match from bone marrow registries in several countries yielded no positive results. Given the urgency of Anabel’s condition the last option recommended was a Haplo-Identical Stem Cell Transplant where Rhoda, my wife, was the donor.
From Paltry $2000 to Whopping $40000
The family had no international insurance and no assets to sell off to help save Anabel’s life.
First, Rhoda and I worked through teaching to save about $ 2,000.
Secondly, the power of relationships in life was a core factor that helped the success of our fundraising campaign. A friend, Dr. Babloo Solomon Santishkumar recommended Christian Medical College Hospital (CMC) Vellore, Tamil Nadu for the transplant, then I reached out to several networks of people that I knew: Dr. Edwin Batte who initiated the US-based fundraising website of gofundme.com; Bro. Daniel Kiamba, Winnie Schluter and Mrs. Mihyang Song, among others, who greatly supported the campaign.
In India, I reached out to companies by travelling to their corporate offices, making presentations of Anabel’s condition and soliciting donations. With other strategies we employed, we were able to come up with roughly $40,000 for my daughter’s transplant.
Anabel is 10 years old now. Half match post-transplant health condition is very complex and requires a lot of watching and waiting. According to her doctors, it takes 3-5 years to really have a good prognosis especially because this procedure is still in its infancy and under experimental research.
Schooling At Home
After her transplant, we decided to home-school her. It’s almost three years now …
Physical, emotional and academic performance
We noted that cognitively she declined; there are a lot of things she could not recall pretty well, her confidence dropped some; she became more emotional than before. Physically there are many things she could not do anymore.
Sickle cell carrier unions
I wouldn’t recommend it. However much in love they may be or how far they may have gone in the relationship, carrier marriages are delicate and sometimes a mess to go into.
I think there is need to create more sensitization of SCD, not only in the countries where it is prevalent but from a global perspective. SCD needs to be incorporated into medical training curriculum worldwide. In the Philippines, few doctors or nurses have heard of sickle cell, talk less its treatment or management. In Rwanda, most doctors have no exposure to the treatment and management of this condition. When I was in Korea, I found that doctors were completely ignorant of my daughter’s condition. The ever-increasing rate at which people migrate to various destinations across the globe calls for a universal approach to sickle cell awareness.