Section:OBS 2N PaGe:13 Edition Date:190804 Edition:01 Zone: Sent at 3/8/2019 11:56 cYanmaGentaYellowbla
- The Observer
News 04.08.19 13
‘They are together, they are equal’: agonising
choice facing the father of conjoined twins
‘Marieme’s dying
process will be
Ndeye’s dying
process. It isn’t
possible to stop
or change that’
Consultant Joe Brierley
Separation surgery
would save the life of
one daughter ... but
lead to the death of the
other. Ibrahima Ndiaye
tells Harriet Sherwood
how he made his
heartbreaking decisionMarieme and Ndeye each have a
sticker on their faces: a butterfl y for
Ndeye, and a green smiley face for
her twin sister. They giggle as they
take them off and stick them back
on; then Ndeye decides it’s their dad’s
turn, placing the smiley face over his
right eye.
“Ndeye is the lively one, she likes
attention, and Marieme is a quieter
personality – calm and thought-
ful,” said Ibrahima Ndiaye , the twins’
father. “Ndeye is fi re and Marieme
is ice.”
Their behaviour – and their dif-
ferences – are typical for three-year-
old twins, but Marieme and Ndeye
are not typical at all. The sisters are
conjoined: they have separate brains,
hearts and lungs, but share a liver,
bladder and digestive system, and
have three kidneys between them.
Ndiaye brought his daughters from
Senegal to Great Ormond Street hos-
pital (GOSH) in London at the age of
eight months after a desperate search
for medical help. Over the past two
and a half years, he and the hospital
have wrestled with an agonising deci-
sion about whether to go ahead with
a surgical separation that Marieme
would not survive, but that could
give Ndeye a chance of a reasonable
life. Without a separation, both will
almost certainly die.
The dilemma is the focus of a BBC
documentary, The Conjoined Twins:
An Impossible Decision , to be broadcast
tomorrow. It follows the deliberations
of the hospital ethics committee, dur-
ing which clinical and lay members,
along with Ndiaye, navigate existen-
tial questions presented by scientifi c
and medical advances.
“Decisions are much more com-
plex than they used to be,” said Joe
Brierley , a consultant paediatri-
cian and chair of the ethics commit-
tee. “We can do unbelievable things
compared to 20 or 30 years ago. But
just because we can, it doesn’t always
mean we should.”
The committee’s role was not to
make decisions but to steer clinical
teams and families through “tough
moral dilemmas, and ensure different
points of views and values are aired”,
he said. The ethics committee was the
fi rst in the UK to invite patients and
families to take part in discussions –
sometimes an uncomfortable
process, said Brierley.
Marieme and Ndeye
were born in Dakar in
May 2016. Ndiaye, who
has four older children,paid for four separate scans during
his wife’s pregnancy. None even indi-
cated twins, let alone conjoined twins.
So their birth was a “massive shock”.
In the following months, he con-
tacted hospitals all over the world,
asking if they could offer help. Each
time the blunt answer was “no” – until
Great Ormond Street said, “Come and
we’ll see what we can do”. The hospi-
tal has separated more than 30 sets of
conjoined twins, including this year
Safa and Marwa Ullah from Pakistan ,
who were joined at the head.
It was a light in the darkness, said
Ndiaye. “I came [to London] with a lot
of hope. However diffi cult the situa-
tion, I told myself, I’m in the UK and
they will fi nd a solution.”
The family arrived in January
2017, when the twins were eight
months old. The medical team, led
by Professor Paolo De Coppi , quickly
established that Marieme’s heart was
dangerously weak and her oxygen
saturation levels low. “Paolo told me
we can’t do [the separation] without
losing Marieme. The light, the hope,
the expectation – all of a sudden, this
vanished,” said Ndiaye.
He faced an agonising decision:
should he give his permission for sur-
gery, knowing that Marieme would
die, in order to give Ndeye a chance of
life? Deciding against surgery would
almost certainly mean Marieme’s
health would deteriorate and both
girls would die. But Ndiaye simply
could not contemplate knowingly
causing Marieme’s death.
“My emotional link with the girls
was so strong, I was very attached
to them. It was a very difficultmoment,” he said. “In this situa-
tion, you don’t use your brain, you
follow your heart. Any decision is
heartbreaking, so much turmoil, so
many consequences.”
There was a legal precedent. In
2000, the UK high court ruled that
Maltese conjoined twins “Mary” and
“Jodie” should be separated against
their parents’ wishes. Without sur-
gery, both would die; with surgery,
Mary would inevitably die but Jodie
could have the chance of a full life. It
was an “excruciating dilemma”, said
one of the judges.
The case was brought by St Mary’s
hospital in Manchester, where the
twins were born and cared for. The
girls’ parents, devout Catholics,
argued that surgery was “not God’s
will”. The surgery went ahead; Mary
died, Jodie survived.
At an ethics committee meeting to
discuss Marieme and Ndeye, Brierley
raised the question of whether it
would be right to go to court if the
twins’ father and the clinical team
came to different conclusions. The
documentary shows him gently spell-
ing out to Ndiaye the consequences of
not separating the girls: “Marieme’sdying process will be Ndeye’s dying
process – it isn’t possible to stop
that or change it ... [And] it won’t
be an option to separate them once
Marieme starts to die.” In the end, he
said, “there was no disagreement”
with Ndiaye’s painful decision not to
separate the girls.
It was the only possible con clusion,
Ndiaye told the Observer: “They are
together – equal. ”
Ndiaye has been sustained by his
faith as a Sufi Muslim. The Qur’an
tells him to be strong, dignifi ed and
patient in the face of hardship, he said.
His wife has returned to Dakar and he
has lost his job as a project manager
in tourism and events. After granting
him discretionary leave to stay in the
UK, the Home Offi ce moved Ndiaye
and the girls to Cardiff. “I have put
everything on standby. I put all my
energy into caring for the girls and
making them happy.
“I know there will be a time when
they have to go. But at this point they
are fi ghting – and they are also pro-
viding me with a reason for living.
They are my inspiration, I dedicate
everything to them. I will never let
them walk alone,” he said.LEFT
Ibrahima
Ndiaye with
his conjoined
three-year-
old daughters
Marieme and
Ndeye. BBCRIGHT
Two-year-olds
Safa and Marwa
Ullah, who
were joined at
the head, were
successfully
separated this
year. PAJoe Brierley,
chair of the
Great Ormond
Street hospital
ethics committee.
BBCwas not to
teer clinical
ugh “tough
ure different
es are aired”,
ittee was the
patients and
cussions –
tableye
n
o
,JJoe Brierley,
chair of the
Great Ormond
Street hospital
ethics committee
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