Testing of foetuses taking root in Kenya

For many Kenyans, testing of foetuses for genetic disorders was previously seen as a luxury or a taboo.

But now these tests that cost more than Sh100,000 are helping parents-to-be make a decision, carry a baby with abnormalities to term, prepare emotionally and financially to bear the huge life-long burden or abort.

As early as eight weeks pregnant, more Kenyan women are sending their blood samples to UK, US, South Africa and India laboratories to know if a child in the womb has Down Syndrome, Patau syndrome or Edwards syndrome — genetic conditions that cause a long list of complications, including death immediately after birth or intestines outside the stomach.

‘‘About 80 per cent of the women who come to this clinic do the tests and as standard practice, all pregnant women in Kenya should be offered these tests in addition to the common HIV, syphilis and haemoglobin,’’ says Dr Sikolia Wanyonyi, a foetal medicine specialist at Aga Khan University Hospital.

Dr Wanyonyi, who is also an obstetrician, says these tests empower parents especially in Kenya where children with Down Syndrome have little societal support. ‘‘As a parent, you will know early enough that your baby will have heart defects and will never be independent. You will have to face the cost and emotional burden that comes with bringing up a child with genetic problems. You may choose to terminate the pregnancy, knowing that this child may take up all the resources that you have,’’ he says.

For instance, a foetus with Patau syndrome is likely to die in the womb or hours after birth. If it survives, it will not function at all.

A woman who decides to continue with a Down, Patau or Edwards syndrome pregnancy should also give birth in a hospital with well-equipped newborn intensive care unit and have a specially trained paediatrician on stand-by.

But as more parents opt for these tests, there is the ethical dilemma to abortion.

In Africa, such talk is a taboo and if a baby turns out abnormal, it is a curse. A child remains a surprise and trying to dig out information about this tiny creature may feel like taking on the role of the Higher Power.

Six years ago, Laura Mwenda walked out of a doctor’s office wondering if she was being asked to play God.

A doctor requested to do a blood test to detect any abnormalities in a 13-week-old foetus. Then she would decide whether to keep or terminate it.

‘‘I asked myself so many questions. If the child forming in my womb had any abnormality, what would I do? What if the test showed DNA defects but after nine months the baby was born healthy?,’’ she says.

The tests came back. There were no defects in the foetus and Ms Mwenda, then 32, did not require further testing of either the amniotic fluid or the placenta to accurately diagnose Down, Edwards or Patau syndromes.

Dr Wanyonyi says testing for genetic disorders and abortion is not wrong.

‘‘If someone looks at it that way, we should close down hospitals. When someone has an illness, a doctor has to intervene. We have been given knowledge to use it to the best of humanity and that is what we are doing.’’

For willing mothers, a blood test is done in early weeks of pregnancy which profiles those at risk of carrying babies with the defective genes. Those with low risks require no further tests. The few with high risks do amniocentesis — a procedure where amniotic fluid is sucked out of the womb using a needle or the doctor sucks out a small placenta tissue for testing, called chorionic villous sampling (CVS).

‘‘A majority of mothers choose to terminate the pregnancy if all the tests come back clearly showing that the foetus has genetic defects,’’ Dr Wanyonyi says.

And are these procedures risky?

‘‘Amniocentesis is done under ultrasound guidance and the risk of miscarriage is very low. It is just one prick and the needle is out. When we do a CVS, the needle can also pick the mother’s cells, the test may show cells from two people hence it may have errors,’’ the obstetrician and gynaecologist says.

Among the three genetic disorders, Down syndrome is most prevalent and children can live almost normal lives. Edwards syndrome is fatal. Patau is the worst and babies who survive have to go through many costly surgeries to repair from the eyes, heart to the kidney to prolong their lives.

But as foetal medicine advances, many Kenyan parents do not know about these tests.

‘‘I get texts from parents wondering why they were never told. That is after taking a baby to India and spending up to Sh5 million. They sell property and the child dies within one year,’’ Dr Wanyonyi says.

For women who have gone through chemotherapy, these genetic tests may not help.

‘‘Chemo drugs may cause deformities but do not put a child at risk of getting Down syndrome. By doing a ultrasound scan, 60 per cent of deformities can be seen at 14 weeks of the pregnancy,’’ the doctor says.

Abortion is not an easy decision to make. In Kenya, the law does not permit it unless there is a need for emergency treatment, or the life or health of the mother is in danger.

‘‘It is not easy. And it can’t be easy for anyone knowing that she is carrying a baby with no organs, who may not live. But sometimes, termination may give you peace, knowing that you have done the right thing for the child,’’ Dr Wanyonyi says.