For many parents, it is best to let sleeping dogs lie when it comes to sickle cell disease.
“I am not going to poke trouble in the eye,” says Nancy Achieng’, on whether she will have her expected baby screened for sickle cell disease (SCD).
For a child to turn positive for SCD, a blood disorder, both parents must have the defective gene.
However, some fathers of SCD positive children refuse to go for the test, preferring to blame their spouses for the problem.
Achieng’, who hails from the lake basin, which together with the Coast region have highest prevalence rates of the disease in Kenya, says her husband is hardly magnanimous in sharing blame.
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Most parents like Achieng’, who would rather stay ignorant of the child’s SCD status, fear that positive results may cause marital conflict.
Yet evidence shows that early diagnosis, particularly at birth, improves disease management, hence reducing painful events and even averting death.
“Newborn screening for SCD, coupled with the provision of comprehensive medical care, has been associated with a significant reduction in related illness and death,” says Dr Elizabeth Kuta of Moi University, Eldoret.
Dr Kuta has been engaged with 1,785 parents and their 1,810 newborns that included 23 sets of twins and one set of triplets at the Kisumu County Hospital.
Fear of the unknown
First was to assess the prevalence of SCD in the area, and then gauge parental acceptance to have their babies screened for the disorder at birth.
The vast majority of the parents, Dr Kuta writes in the current issue of the East African Medical Journal had accepted the screening.
Most of those who said no cited fear of the unknown followed by those who dreaded a positive result could create marital conflict.
To alleviate such tension, doctors at the Moi Teaching and Referral Hospital (MRTH) recommend results be presented to both parents together.
“It is good when both parents are there because with sickle cell disease there is a lot of blame game like it came from the father’s or mother’s side,” says a clinician at the hospital.
Doctors at the hospital, says Peninah Jerotich Biwott in a study on how SCD results are disclosed to parents at MRTH, prefer to have both parents to avoid the possibility of a blame game.
Jerotich says disclosure, if not well handled, can negatively affect the entire family psychologically and emotionally.
Consequently, the World Health Organisation (WHO) has developed a six-step protocol that ensures confidentiality and fairness in disclosure of SCD results.
However, Jerotich in the study involving 46 parents at the MTRH sickle cell clinic, indicates that the WHO protocol is not being observed.
“Results are just given to you in a paper with no envelope. He gave me when people were there, said the results were positive and that the doctor would tell me later. He didn’t call me alone,” said a participating parent.
The researchers recommend that hospitals screening for SCD adhere to the WHO disclosure protocols, while projecting a caring, understanding and pleasant attitude.
But the dilemma facing families receiving SDC results is best demonstrated in a recent genetics study in Kilifi County, at the Coast.
The study by the Kenya Medical Research Institute (Kemri) had screened about 15,000 children for SCD in the county.
Nearly 1 per cent of children under one year in Kilifi are estimated to have the disease, while 18 per cent carry the defective gene.
Parents of children found to have SC disease in the Kemri study were informed of the results and referred to a dedicated clinic for counseling and long-term care.
But unexpectedly, some of the fathers whose children had turned positive had requested Kemri to screen them (fathers) for the sickle cell gene.
The reasoning here was that if the father was negative then he is not the biological parent of the child and hence he had been played by the wife.
“Consequently, the researchers in Kilifi seemed to be presented with a moral dilemma in deciding how to respond to requests for paternal SC testing,” says Vicki Marsh of Kemri, in a study addressing the dilemma.
Faced with this dilemma, the researchers decided to go back to the community to consult on how best to handle the paternity requests.
There were divergent views, says Marsh and colleagues in their report in the journal Social Science & Medicine, with most of the residents recommending that Kemri carries out the requested tests.
“Where fathers of children shown to have SCD requested testing of their own SC status, many residents, including all mothers with an affected child, thought this should be done,” said the Marsh report.
But there were those who argued that positive results could wreck families and unfairly punish the affected but innocent children.
Called upon to make a Solomonic decision on the matter, Kemri had resolved not to test fathers for SC on request.
“It is difficulty to support an argument that researchers should test fathers for SC trait on request … as this may conflict with important local and more widely held values,” said the Marsh report.
Whether this decision assured peace in affected families or may push the fathers to seek screening elsewhere remains a matter of conjecture. But for Achieng’, it may be a matter of kicking the can down the road.
