Termination
of pregnancy when the unborn child has Spina Bifida and/or Hydrocephalus. An
overview on international literature.
Dr. Carla Verpoorten
Reviewing the
recent literature on prenatal diagnosis of spina bifida and selective abortion,
we can summarise the articles in four categories : actual practice and policy
in different countries, the moral and ethical aspects, the legal aspects and a
challenge to the actual practice and policy
ACTUAL PRACTICE AND POLICY
Since 1975 prenatal diagnosis of spina bifida
became available with routine screening for elevated levels of maternal serum
AFP, amniocentesis and in more recent years the widespread availability of
ultrasound. The ability to assess the severity of foetal abnormality at an
early stage of gestation enables the parents and the physician to discuss
prognosis and make an informed decision regarding termination of the affected
pregnancy, which is legal in most states until 24 weeks. Some of these
diagnoses are not made until after 24 weeks' gestation. At these late
gestations, many physicians are unwilling to perform pregnancy termination,
partly because of the possibility of producing a "live-born" neonate.
Not all parents faced with a foetal anomaly elect to abort. However, in case in
which the parents have elected abortion, the intent is to prevent the delivery
of a live-born neonate. Some neonatologists believe that once any potentially
viable neonate is separated from its mother, it is independent and thus
requires resuscitation regardless of maternal intent. With the intention of
preventing the attendant medical, ethical, and legal problems arising from the
birth of live-born, anomalous foetuses, intracardiac potassium chloride
injection is used to assure stillbirth
in the setting of medical abortion
late in pregnancy.
MEDICAL AND ETHICAL
ASPECTS
ENSURING A
STILLBORN : THE ETHICS OF FETAL LETHAL INJECTION IN LATE ABORTION
In his article J.C.Callahan
argues for the moral acceptability of
using intracardiac KCl injection to ensure that a seriously anomalous foetus
will not be live-born. He gives moral arguments supporting lethal injections
for anomalous foetuses : the safety of the woman and the interest of the
anomalous foots." Late abortions of seriously anomalous foetuses are
undertaken precisely because it is decided that if these foetuses were to
survive, their lives would be of an unacceptably low quality."
LEGAL ASPECTS
LATE ABORTION AND
THE EUROPEAN CONVENTION FOR HUMAN RIGHTS
National abortion laws
usually do not allow abortion when a foots is independently viable, i.e. from a
gestational age of about 24 weeks.
Foetal anomalies are sometimes detected only in an advanced stage of
pregnancy.
National legislatures who want to allow "late" abortion
need to account for the protection the foots may derive from the European
Convention for the protection of human rights.
Due to rapidly growing developments in prenatal diagnosis, with
which treatment methods do not as yet keep step, an initially welcome pregnancy
may become unwanted if a severe,
incurable disease or handicap is detected. It then depends on the moment of
detection, which for several reasons may be not before the third trimester,
whether or not, under the standing Abortion Act in the country concerned, an
abortion is still allowed
European Convention on
Human Rights and the law in some European countries.
In France , the law allows for a "therapeutic"
abortion" to be authorised by two physicians not only if continuation of
pregnancy would seriously endanger the health of the woman, but also if it is
to be expected that the future child will suffer from a particularly severe
abnormality or disease which is considered incurable. There is no limit in
terms of gestational age (art L.162-12 code de la Santé publique)
The Belgian code has a prevision which is basically similar. (art.
350,2 code penal)
In the UK not only legislation on abortion for foetal
abnormality has been enacted, but also professional guidelines exist. The law
is to be found in the Abortion Act as amended by the Human Fertilisation and
Embryology Act 1990.
Previously, the upper gestation at which abortion for foetal
abnormality could be provided was limited.
Under the amended Abortion Act two medical practitioners, acting in good faith, may
certify that a pregnancy can be terminated at any gestation if..."there is
a substantial risk that if the child were born it would suffer from such
physical or mental abnormalities as to be seriously handicapped".
The practitioner notifying an abortion after 24 weeks is required to
provide a full statement of the medical condition of the foots and should also
complete a still birth certificate.
Law and practice
in the Netherlands
Abortion is prohibited under art.296 of the Dutch Penal Code.
Only if the abnormalities are of such a nature that "no
extra-uterine survival" can be expected
(which means that even after 24 weeks the foots cannot be considered
viable), the law would not prohibit termination of the pregnancy.
A CHALLENGE TO PRACTICE
AND POLICY
In a recent article on Prenatal Diagnosis and Selective Abortion,
Adrienne Asch argues that professionals should re-examine negative assumptions
about the quality of life with prenatal detectable impairments an should reform
clinical practice and public policy to improve informed decision making.
Current data on children and families affected by disabilities indicate that
disability does not preclude a satisfying life. Many problems attributed to the
existence of a disability actually stem from inadequate social arrangements
that public health professionals should work to change.
This article assumes a pro-choice perspective but suggests that
unreflective uses of prenatal testing could diminish, rather than expand,
women's choices. This critique challenges the view of disability that lies
behind the social endorsement of such testing and the conviction that women
will or should end their pregnancies if they discover that the foots has a
disability trait.
In order make testing and selecting for or against disability
consonant with improving life for those who will inevitably be born with or
acquire disabilities, our clinical and policy establishments must communicate
that it is acceptable to live with a disability as it is to live without one
and that society will support and appreciate everyone with the inevitable
variety of traits. When our professions can envision such communication and the
reality of incorporation and appreciation of people with disabilities, prenatal
technology can help people to make decisions without implying that only one
decision is right
CONCLUSION : our message
to the medical world and the policy makers
The prognosis for children with spina bifida anno 2000 is much
better than indicated by Lorber. Professionals should change their pessimistic
view on long-term prognosis and need to counsel parents about the full spectrum
of impairment in addition to the effects of modern forms of treatment on the
outcome of unborn infants with spina
bifida. The pessimistic public opinion has to be changed before we can assure
prospective parents that they and their future child will be welcomed whether
or not the child has a disability.
If the child with a disability is not a problem for the world, and
the world is not a problem for the child, perhaps we can diminish our desire
for prenatal testing and selective abortion and can comfortably welcome and
support children of all characteristics.
