| Siamese
Twins
Should doctors decide or parents
if one should die so the other Siamese twin can live? What
are Siamese twins? Two heads on one baby. Moral / ethical
issues and debates.
(Pictures above are not of siamese twins referred to in this article)
Siamese twins were hugely in the news in February 2004 after the birth of Rebeca Martinez with a second parastitic head growing out of the top of her own skull. Rebecca died after the conjoined twin head was cut off. Another tragedy happened in 2000 following the arrival
in the UK of distraught parents from the Maltese Island Gozo, seeking
medical help to separate their two newborn babies, Jodie and Mary.
Doctors at St Mary's Hospital in Manchester had no experience of
separating Siamese twins but feared that unless action was taken,
both would die. The parents were told that despite appearances,
Mary's internal organs were so defective that she could not survive
without being joined to Jodie. The parents of the Siamese
twins refused an operation, and the case was heard in court.
The Judges ruled that the operation should go ahead..... but.....
What are Siamese Twins?
Siamese twins are formed from a single egg which
develops into two almost separate balls of cells. In normal twinning,
each ball becomes an identical twin. As a result cells in Siamese
twins become confused about where they are in the body - indeed
which of the two Siamese twins they are actually in.
In normal embryo and foetus development every cell
knows where it is in the body because the neighbours produce chemical
messages. So a skin cell knows not only it is skin, but that
it is - say - nose skin, rather than chin or ear or lip skin. In
Siamese twins these chemical messages don't work properly - how
can they? The end results can be very bizarre:
a single organism with two heads, two hearts, four legs and arms
- or is that single organism actually two people, two individual
Siamese twins?
Two heads on one body - another
type of Siamese twins
Picture above does not relate
to this case below
I once was present in the labour room when a child
was born with two heads - yes two heads - on a single set of enlarged
shoulders. Siamese twins or just another major abnormality?
So then. you can't label all Siamese twins the same. There
are huge variations in the degree of joining. Some are born
with two bodies and one head for example.
In the case above, the two headed child / Siamese
twins was / were stillborn. But what if it / they had stayed
alive? What if we had landed up with two thoughtful Siamese
twin brains on the same body - perhaps only one actually in control
of movements below the neck?
Strangely enough, a surgeon has made an artificial
Siamese twin of a monkey, onto which a second head was transplanted.
(See video).
The moral debate on separation
of Siamese twins
In fact the situation with the Siamese twins in the
UK was in a way quite similar. Although at first sight each
appeared to have a separate well formed body with some joining at
the lower body, detailed tests showed these Siamese twins were very
unequal - one was providing the heart, lungs and many other basic
functions.
The other Siamese twin was very poorly equipped for
separate life. To make matters worse, these Siamese twins,
Jodie and Mary, were also to some extent mutually dependent.
If separated, the stronger and more capable Siamese twin (Jodie)
would need huge amounts of surgery over subsequent years, and was
likely to suffer significant handicap.
The parents came in a hurry to the UK because they
heard that Britain was expert on the management of Siamese twins,
hoping no doubt that both could be separated with few long term
problems. The long court battle was decided with doctors being given
the right to cut off the weaker Siamese twin, thereby killing Mary,
to preserve the life of Jodie - against the parent's wishes.
They felt that if the two could not be safely separated then they
should be left together and nursed with loving care until natural
events took over. Some doctors said that both would soon be
dead in that case. Others said that these two Siamese twins
could survive far longer with good basic care.
Doctors have second thoughts on
separation of Siamese twins
Of course, once the court battle was won by doctors,
they began to have second thoughts. It is a brave doctor indeed
who is willing to take the knife to two Siamese twins, both of which
are at that point alive and growing, and see perhaps both Siamese
twins die in the operating theatre or very shortly afterwards.
Easier to go ahead if the parents want their Siamese twins separated
and understand and accept the risks - but what if you have had to
force the whole thing on them in the first place?
And there is another issue. The survivor of
these Siamese twins would need huge care efforts and community support.
The parents said this would be unlikely in their own culture and themselves
felt very resentful and angry at what they saw as gross medical
interference.
A fundamental problem in Siamese twin decisions is
that the parents themselves may not always agree, they may each
feel differently on different days. It is common for parents
to feel somehow that the birth of Siamese twins is their fault,
or to blame each other, doctors, society or God. The
natural joy of birth has been replaced by overwhelming grief for
the loss of what might have been - in this case one or two perfectly
normal children. This is a hard place to make life-changing decisions
about Siamese twins management.
Doctors should treat with great
care
My own view, on balance is that doctors should tread
with great care when parents are refusing certain treatments for
their children, where the outcome of successful treatment is likely
to be severe handicap and loss of quality of life. It
is a human right for any human being to refuse medical treatment,
and it is the responsibility in the case of children for parents
to take those decisions on behalf of their children. In this
case the fight was because some doctors disagreed with the parents
and wanted to take that responsibility away.
But these parents had come to the UK in good faith,
seeking advice on the management of Siamese twins. They did
not expect to find themselves imprisoned in the country, forbidden
to take their children back home, and forced to take that advice,
when they believed it to be morally wrong. Their Siamese children
were essentially kidnapped by court, and imprisoned against their
parents' will in the UK. That does not sit comfortably with
me.
Medicine gone mad
Too many times I have seen medicine gone stark raving
lunatic mad with aggressive over-treatment and stupid decisions.
Even the Catholic church, traditionally the most conservative in
these matters, has taken the position that doctors should not strive
officiously to keep someone alive. This is a common issue
in the care of those dying of advanced cancer. It was in keeping
with this that the Vatican offered a safe refuge and hospice care.
Here is a strange irony: if mother had arrived
a day before going into labour, under existing UK law doctors could
have killed the Siamese twins in the womb and then forced a labour
and buried or cremated them without any fuss whatsoever. The
UK has one of the laxest abortion laws in the world. But the moment
these two Siamese twins were born, the world began to worry that
every possible effort should be used to at least keep one alive.
It would be far safer for the future of humanity if
we meddled less, and allowed nature far more room to take its own
course, neither slaughtering babies in the womb just hours or minutes
before birth, nor going over the top to fight for life at all possible
costs after birth.
* The Siamese name comes from the well known
twins Eng and Chang born to Chinese parents in Siam (now Thailand).
The first surgical separation of Siamese twins was in 1953.
Pictures
of Siamese twins - not for sensitive people - distressing
Life and death
decisions - when I have been asked to kill people as a doctor
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