Eric Madete, a real estate agent in Nairobi, has a child with Down Syndrome (DS), a rare genetic disorder that results in physical and mental disabilities.
But Madete, whose child Bradley is now 16 years old, wishes he had known, while his son was in the womb, that he had the condition.
This would only have been possible through various medical tests that are currently available.
“Before we got Bradley, we had never heard of DS. We did not even know about screening for the condition. If we had known earlier, we would have prepared ourselves better to receive our child and take care of him well after birth,” Madete said.
He continued: “Children with DS require informed and well prepared parents who are able to understand their special needs and nurture them properly to realise their potential.”
Madete, who is Chairperson of the Down Syndrome Society of Kenya, recalls how he and his wife Lydia were in trauma and confusion for several months after Bradley’s birth.
They did not know the root cause of their child’s feeble health, including having a congenital heart ailment that required surgery.
“It was only after several months that a heart specialist diagnosed our child with DS. That is when we began to understand what Bradley was going through. I wish we had known this much earlier,” he says.
A child with DS will have poor intellectual development, speech impediments, congenital heart defects as well as hearing and sight disorders among other ailments. The Ministry of Health estimates that one in every 700 children born in Kenya has DS.
While some like Madete would advocate for screening to help parents adequately prepare for a child diagnosed with DS, this is a topic that is generating some controversy. There are concerns that conducting these tests will encourage abortions as parents avoid having children with disabilities.
Recent surveys in Europe and the United States have indicated that at least 92 per cent of mothers often choose to terminate their pregnancy once they learn that their foetus has DS.
In countries where abortion is illegal, women often go to backstreet clinics to get it done.
This has made screening for DS in expectant mothers a controversial matter among legal, religious and human rights groups with critics arguing that it has become a ticket to eliminate babies with disabilities.
As chairperson of the Down Syndrome Society of Kenya, Madete says he has witnessed first hand the toll raising a child with DS can have on a family.
He believes with screening, parents can prepare psychologically which saves them from the emotional trauma that often comes with having a child with disabilities and which has caused some families to fall apart.
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“The screening should be accompanied by robust professional counselling to enable couples understand that babies with DS need not be aborted since they can be nurtured to become useful members of society. Every child is a gift from God,” he said.
According to Dr Ahmed Kalebi, consultant pathologist and CEO of Pathologists Lancet - an independent medical laboratory network that screens for DS, expectant women who are 35 years and above should consider the screening since the risks are higher in this age bracket.
“All expectant mothers carry this risk to a certain extent but it increases among women in their mid-thirties and above. The screening is done within the first trimester of pregnancy,” Dr Kalebi said.
He continued: “The screening is however, not meant to encourage abortions but to put expectant women in an informed position about the condition of their baby in the womb.”
Dr Kalebi, who is also an honorary lecturer in the University of Nairobi, said the screening involves conducting blood tests which are then used to determine whether the foetus is at risk of having the condition. Some blood tests can discover up to 95 per cent of DS cases.
Apart from this, ultra sound scans are also done to monitor the amount of fluid behind the foetus’ neck since higher amounts of the fluid is often a sign of DS.
Dr Kalebi said tests can also be done on the amniotic fluid, which surrounds the baby in the uterus, or from the placenta tissue to provide definitive confirmation if the baby indeed has DS or not.
He however, cautioned that these are invasive tests which carry a small risk of causing a miscarriage.
On his part, Principal Secretary in the Ministry of Health Dr Nicholas Muraguri said termination of pregnancy due to DS is illegal in Kenya since the condition does not threaten the life of the mother.
Dr Muraguri said children with DS can be nurtured and supported to realise their full potential rather than being eliminated from the womb.
“There are no plans in the near future to review the Government’s policy on abortions to accommodate DS,” he said.
Sheikh Abdullatif Abdulkarim, a Muslim theologian based in Nairobi, said termination of the pregnancy is opposed by Islamic law if it is not recommended by a competent, professional and morally upright medical practitioner.
“It is not allowed under Islamic law to terminate the pregnancy unless it is an emergency and the life of the mother is at stake,” he said.
The Anglican Church of Kenya, Bungoma Archdiocese Rev George Mechumo said it is morally wrong for an expectant mother to terminate her pregnancy to avoid giving birth to a child with disabilities caused by DS.
“It is God who has created persons with disabilities and they deserve equal treatment and love just like any other human being. Terminating pregnancy of a foetus that has disabilities is just murder,” he said.
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