Watch it, genotype is rocking many relationships

Many people who make hard choices in spite of
genotype are not finding things easy, JAYNE
AUGOYE writes
Chibudem and Nneoma Okafor (not real names)
were childhood sweethearts. Their love affair could
be described as one that was consummated in
heaven and only waiting to be dramatised on earth.
After a whirlwind romance that lasted nearly 22
years, the lovebirds decided it was time to take
things to the next level.
That decision would bring them to face their
biggest challenge yet:Results from their genotype
tests showed that they were both carriers of the
sickle cell type popularly known as AS.
Fully aware that their child had a 25 per cent
chance of being born with sickle cell anaemia,
since they are both AS, the lovers realised that
they might be headed for a quagmire.
Now faced with this heart-wrenching discovery,
they had to take a decision fast. With friends and
family mounting pressure on them by the day, they
were haunted by scary pictures of what might
befall them in future if they decided to get married.
By the way, the lovebirds live in Lagos, with one of
them being a top legal practitioner.
“My in-laws would narrate scary stories like that
of a close family friend of theirs who had seven
children but lost six of them to sickle cell disorder,
leaving them with just one child,” Okafor says.
“They gave us several other practical experiences
and examples, which they believe were more than
enough reasons why we should end the
relationship. But we kept seeing each other. When
we eventually insisted on getting married they had
no choice but to allow us to wed.”
Dashed hopes
The couple say they were encouraged by the fact
that the Sickle Cell Foundation, Lagos, had told
them that the non governmental organisation was
about to bring in an equipment that would enable
them diagnose the genotype of a foetus before
birth. The test is called prenatal diagnosis. As
cheering as the news sounded, they were
confronted with moral and religious burden of
aborting a foetus.
“We were told that we could terminate the
pregnancy if the baby turned out to be a ‘sickler’
and then keep trying till we get the desired choice.
We were quite encouraged that such technology
was coming in at that time.
“Sadly, we did not even try that option at the end of
the day because the centre did not bring in the
equipment. What they resorted to do was to take
the blood samples and then send them abroad. But
this was very expensive back then.”
A game of chance
Faced with the dampening news, they decided to
take their fate into their own hands. Good news:
the Okafors had their first child —a boy — within
the first year of marriage. He is an AS, as the term
goes.
The couple heaved a sigh of relief and then tried a
second time. This time around, they were in high
heavens, with the birth of their second child, also a
boy. It was joy unspeakable after the news was
broken to them.
“We did a test on the baby and were told he was
AA. We were very happy and even gave a
testimony in church. We considered ourselves
very lucky. But he took ill when he was about two
years and we took him to the hospital.
“Within six months after he was discharged, he
was ill again. Most times, he was always having
this reoccurring temperature. A doctor friend, who
suspected that my son must be SS, advised that
we take him to a federal hospital to do a genotype
test,” the man notes.
And then, their greatest nightmare was confirmed.
He is, indeed, a sickler, meaning that the poor boy
had been initially wrongly diagnosed. He says it
was then it dawned on them that we were in for a
challenge. Thankfully, their son never suffered any
crisis up until 2013, when he was about six years
old.
At this point, Okafor fights hard to stop the tears
flowing endlessly, as he narrates his rather painful
experience to our correspondent.
“His mom woke him up to urinate and he did that
freely, but when he tried on his own some minutes
later, he could not. We had to rush him to the
hospital because he could neither defecate nor
urinate. He stayed in the hospital for one month,”
he recalls.
But as emotional as his narration might read,
Okafor says he has no regrets, as he looks on the
sunny side of life.
Wrong diagnosis
If you consider Okafor’s story as being very tough,
wait till you read Soji’s. His is akin to suffering due
to no fault of his. As a young chap, he says, he had
always been aware of the complexities of genotype
and how it affects the future of any individual.
Armed with such useful information, coupled with
the fact that he was a sickle cell carrier, (AS), he
throd carefully when it came to matters of the
heart.
It was with a joyful heart that Soji spared no
thought in taking Tricia as his wife; after all, she
was AA.
It was an enviable union which was blessed with a
beautiful daughter in no time. But after they
welcomed their second daughter, things fell apart.
“My daughter was always falling ill when she was
less than six months. As first, we thought it was
just childhood fever. But we were in for a shock
after the doctor asked us to carry out a genotype
test.
“It turned out that my innocent daughter was SS. I
went mad and had reasons to doubt the paternity
of the child since my wife was supposed to be AA,”
he says.
After a lot of investigations, the couple discovered
that his wife had been wrongly diagnosed to be AA
when she was, in fact, AS.
“My wife was told that she was AA at a lab where
she had carried out a genotype test shortly before
we got married. She was made to repeat the test
three times at three different reputable hospitals
and the results still read AS. Then, it dawned on us
that she is, indeed, a carrier of the sickle cell
gene.”
While Soji has since accepted the situation as his
fate, he says the price that the wrong diagnosis
has cost his marriage is one he would have to pay
all the days of his life.
Hear him, “Any time I look at my daughter in crisis,
my heart breaks, because I feel it could have been
avoided if not for sheer negligence on the part of
someone. Sometimes, I blame myself because I
was too aware of the challenges of raising an SS to
have fallen victim myself.”
His daughter turned 10 last year. For now, Soji
notes, he is learning to come to terms with the
reality at hand by the day.
“This scenario is quite common,” says Ebenezer
Adeleye, who is the programme co-coordinator at
the Sickle Cell Foundation, Nigeria. According to
him, the centre always meets with couples or
individuals with such predicament every week.
“Wrong diagnosis of genotype is very rampant in
Nigeria because most of the
laboratories ,especially the roadside ones, are not
well equipped to carry out this test.We see
instances such as this all the time. The only way
out is to train the laboratory staff,” he reveals.
Thwarted by nature
“I have dated a guy for almost seven years. We
were lovers back in the university but the thing is
we cannot get married. At the same time, we have
refused to let go of each other.”
Jacqueline’s predicament, as captured above, is
one that many lovers with a similar fate can relate
to. The lines on her face say it all. They move in
accordance with her mouth as she speaks.
She is, without a doubt an unhappy lady. Although
she turns 37 this year, the dark-skinned lady tells
our correspondent that her experiences with men
can rival that of a 45-year-old.
“I think I am simply unlucky. All the guys I could
have considered dating are also AS while the un-
serious ones are AA. I have decided to stick with
Shola, even though I know there is almost no
future between the two of us. After all, the devil
you know is better than the friend you don’t know.”
She currently lives a life of uncertainty—unsure of
what the future holds. But before this
correspondent could sermonise that hers is not a
helpless condition, she interjects, “What difference
does it make whether or not I am an SS?
“What sort of condition gives a human being
stringent conditions that cost him or her happiness.
My sister, I am not happy at all.”
She narrates her experience, continually struggling
to try to conceal a stream of tears. Yet, in the
attempt, her voice betrays her. Hers is the typical
love story that has been thwarted by incompatible
genotype.
Narrow escape
Susan had to call off her wedding exactly three
days to the set date. With invitations already sent
out and preparations in full-swing, the investment
banker says as tough as the decision was for her
at the time, it is worth it, at the end of the day.
Though now married with a child, Susan says she
suffered a lot of humiliation from close friends and
family.
“Some people thought I was mad to have called off
‘the long awaited marriage’ since I wasn’t getting
any younger. She was in her late 30s at the time.
But when I explained to them that I couldn’t stand
to raise a sickler as a child, they were
unconvinced.
I couldn’t afford to make such a grave mistake
after losing a close friend to sickle cell disorder,”
she explains.
She adds that though she regrets not carrying out
the genotype test early enough owing to a myriad
of issues, it remains a wise decision.
“My fiancée and I were really in love back then,
but we never took the genotype issue seriously.
After our church asked us to do the tests, I wasn’t
bothered because I was AS and my lover said he
was sure he was AA. He said all his siblings were
AA. But when the results came out, he turned out
to be AS. I almost went ahead with the marriage,
but when I remembered my friend who passed
away at 27 and never got to live a beautiful life, I
took the decision, maybe in her honour,” she
narrates.
Although she has since moved on with her life, she
adds that her ex-lover is still single.
What clerics say
Based on what some clerics say, the Islamic faith
believes in the efficacy of prayers in any given
situation. As a result, imams do not dabble much in
medical compartibility of the partners involved.
One of them, Malam Mustapha Abdur-Rahman,
says “The Imam who would conduct the Nikkai has
no business with the genotype of the couple. He
will join them as man and wife, but the couple will
need spiritual prayers to guard against any
problem in the future.
In the recent past, many couples who planned to
wed but were not genetically compatible chose not
to wed in their places of worship for fear that their
requests might be turned down.
This trend appears to be a thing of the past, as a
number of religious bodies do not have stringent
rules in this regard. In fact, religious leaders who
spoke with this correspondent say the couples
have the final say, as all they do is to simply
counsel them on the challenges ahead.
Rev. Chidube O.P, of Dominican House, Mafoluku,
Lagos, says, “AS or SS is not one of the factors
that can determine a marriage valid or invalid. It is
about people understanding the challenge before
them.
“It is only when they do not know, perhaps due to
the fact that either of them conceals his or her
status, that there may be a problem. The Catholic
Church marries them as long as they know what it
entails.”
Adeleye of the Sickle Cell Foundation, also thinks in
the same line. “When people decide to fall in love
or get married, the issue of genotype is always the
last thing on their mind. There are other
considerations that go into it. So, when they get to
know their genotype, it is very difficult to call it off
and that is why that test is important. But, we
believe that such discovery should not break a
beautiful relationship.”
In the Anglican Church of Nigerian, the stance is
not any different. The Diocesan Adviser on Public
Relations, Diocese of Lagos West, Anglican Church,
Mr. Tunji Oguntuase, explains that the church does
not dwell so much on the medical condition of
couples-to-be.
He says, “We do not ask them to bring any medical
certificates or anything like that. If God has called
the two of them together, they can come for
counseling and then fix a wedding date.
“At the same time, we advise the couple to check
out their status, if they choose, but it is not
mandatory for us in the Anglican Church. Although
not a rule, they are advised to go for it during
counseling. And if they realise that they are not
compatible, we advise them and if their faith can
carry them, we go ahead and wed them.”
Pastor Femi Dada-Richards, a zonal pastor in the
Redeemed Christian Church of God, adds that the
men of God often advise the affected couple to call
off the relationship before they fall neck-deep in
love.
He explains, “In a situation where they have gone
far in the affair and there is nothing you can do, all
we do is have faith and pray for them. But the
major thing we advise is for them to part ways
once they discover instead of binding and loosing.”
Having learnt the hard way, Okafor talks tough. “I
advise people whose genotype is incompatible not
to get married. I feel sickle cell anaemia is an
unnecessary burden that can be eradicated with
proper enlightenment. In fact, the government
should give penalties for such couples who go
ahead to tie the knot so as to discourage others
from taking the terrible risk.”
Sickle cell disorder
The World Health Organisation lists Nigeria as the
country with one of the highest numbers of children
with the sickle cell disorder.  It states that 150,000
children are born with sickle cell anaemia each
year.
Of 1,000 live births in the country, 20 infants have
the disease, while more than 40 million Nigerians
are healthy carriers of the sickle cell gene. There
are three major types of genotype namely AA
(normal), SS (sickler) and AS (carrier). Others are
SC and CC.
According to experts, if only one of the partners
has sickle cell trait (AS), their child cannot be born
with sickle cell anaemia (SS). But there is a 50 per
cent chance that the child will be born with sickle
cell trait (AS).If one parent has the sickle cell
disease (SS) and one parent has sickle cell trait
(AS), there is a 50 per cent chance that their
children will be born with sickle cell disorder (SS).
Doctors therefore advise intending couples to
know their genotypes and forgo relationships that
can lead to the birth of a child with this painful
disorder.
Again Adeleye says, “People call off marriage
because they are not well informed. A lot of them
are scared and not well-informed so they can’t
make informed decision. We (Sickle Cell Centre)
don’t try to steer them into any direction we only
inform them of the likely things they may face and
the best ways to ameliorate the future problems.”
While very little or no information is publicly known
about the sex with the highest prevalence in
Nigeria, Dr. Rotimi Adesanya, a child and public
health physician with St. Ives Specialist Hospital,
Ikeja, Lagos, says the male folk appear to be more
affected.
“Several studies conducted in the different
centres, mostly the teaching hospitals, in the
country, have shown a prevalence of HBSS male —
female.The ratio is averagely 1.2 to 1.This means
that for every six male with HBSS, there are five
female with the disease.
Folic acid for life
Having a child with the sickle cell disorder involves
significant sacrifices physically, emotionally and
financially. It remains a daunting task to the
parents, irrespective of their financial standing.
Okafor corroborates this assertion, saying, “We
run a mini pharmacy in my house and I spend as
much as N25, 000 to N30,000 on drugs alone in a
month. One of the major drugs, NICOSAN, whose
production was stopped in 2008 after the company,
Xechem International, was declared bankrupt, used
to sell for about N20, 000.”
Dr. Adesanya also lists recurrent pain caused by
sickle cell disorder, low blood level, persistent
fever, as well as the hand and foot syndrome as
some of the conditions associated with sickle cell.
According to him, children with sickle cell anaemia
may begin taking the antibiotic penicillin when they
are about two months of age and continue taking it
daily until they are five years old. They should be
given anti-malaria drugs from time to time to avoid
crises for life. The child must also take folic acid
daily for life.
Ray of hope
The good news is that there is actually a cure for
sickle cell, after all. It is called the Bone Marrow
Transplant. According to Dr. Adesanya , through
the process, the genotype will change from HBSS
to HBAA or simply put from SS to AA.
On September 29, 2011, the University of Benin
Teaching Hospital, Benin, Edo State, recorded the
first successful bone marrow transplant in Nigeria
by transmuting young Matthew Ndik, from HBSS
genotype to HBAA genotype, using stem cells
donated by his 14-year-old elder brother.
The feat was also repeated on yet another patient
at the institution in 2013.
Okafor, who says he is considering the option
abroad, argues that it is still rather expensive.
He says, “There is a facility in Italy where you can
do the bone marrow transplant for about N15m.
There is an institution over there in Italy that also
gives discount to children. The hospital pays half of
the price of the procedure, while the parents or
patient bear the other half of the cost. However,
you have to use the marrow of a sibling of the
carrier and it has to be a younger person.”