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REVIEW ARTICLE
Year : 2015  |  Volume : 18  |  Issue : 7  |  Page : 31-39

Ethical and legal dilemmas around termination of pregnancy for severe fetal anomalies: A review of two African neonates presenting with ventriculomegaly and holoprosencephaly


1 Programme of Bio and Research Ethics and Medical Law, School of Nursing and Public Health and Nelson R Mandela School of Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
2 Clinical Neonatology Unit, R.K. Khan Hospital, Durban and Department of Paediatrics, Nelson R Mandela School of Medicine, University of KwaZulu-Natal, Durban, South Africa

Date of Web Publication1-Dec-2015

Correspondence Address:
S C Chima
Programme of Bio and Research Ethics and Medical Law, School of Nursing and Public Health and Nelson R Mandela School of Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban
South Africa
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/1119-3077.170820

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   Abstract 


Termination of pregnancy (TOP) or feticide for severe fetal anomalies is ethically and morally challenging and maybe considered illegal in countries with restrictive abortion laws. While diagnostic modalities such as fetal ultrasound, magnetic resonance imaging, and genetic screening have improved prenatal diagnosis, these technologies remain scarce in many African countries making diagnosis and counseling regarding TOP difficult. Ethical dilemmas such as women's autonomy rights may conflict with fetus' right to personhood, and doctor's moral obligations to society. In liberal jurisdictions, previable fetuses may not have legal rights of personhood; therefore, appropriate action would be to respect pregnant women's decisions regarding TOP. However, in countries with restrictive abortion laws the fetus maybe imbued with the right of personhood at conception, making TOP illegal and exposing doctors and patients to potential criminal prosecution. Birth of a severely disabled baby with independent legal rights creates further conflicts between parents and clinicians complicating healthcare decision-making. Irrespective of the maternal decision to accept or refuse TOP, the psychological and emotional impact of an impaired fetus or neonate, often lead to moral distress and posttraumatic stress reactions in parents. Doctors have legal and ethical obligations to provide an accurate antenatal diagnosis with full disclosure to enable informed decision making. Failure to provide timely or accurate diagnosis may lead to allegations of negligence with potential liability for "wrongful birth" or "wrongful life" following birth of severely disabled babies. Mismanagement of such cases also causes misuse of scarce healthcare resources in resource-poor countries. This paper describes ethical challenges in clinical management of two neonates born following declined and failed feticide for severe central nervous system anomalies with a critical appraisal of the relevant literature.

Keywords: Africa, abortion, ethics, disability, feticide, human rights, holoprosencephaly, law, ventriculomegaly


How to cite this article:
Chima S C, Mamdoo F. Ethical and legal dilemmas around termination of pregnancy for severe fetal anomalies: A review of two African neonates presenting with ventriculomegaly and holoprosencephaly. Niger J Clin Pract 2015;18, Suppl S1:31-9

How to cite this URL:
Chima S C, Mamdoo F. Ethical and legal dilemmas around termination of pregnancy for severe fetal anomalies: A review of two African neonates presenting with ventriculomegaly and holoprosencephaly. Niger J Clin Pract [serial online] 2015 [cited 2020 Aug 10];18, Suppl S1:31-9. Available from: http://www.njcponline.com/text.asp?2015/18/7/31/170820




   Introduction Top


Prenatal diagnosis using fetal ultrasound, magnetic resonance imaging (MRI), and genetic screening is increasingly used to inform expectant mothers of potential fetal anomalies that may create physical, psychological, and social harm to parents and families. Fetal ultrasound is the standard of care for antenatal examination of pregnant women, especially high-risk patients with advanced maternal age, diabetes mellitus, polyhydramnios, and other suspicious antenatal presentations.[1],[2] However, the availability of these technological modalities and expertise in prenatal diagnosis is limited in most resource-poor African countries. New technologies are also important to guide appropriate use of available healthcare resources and enable informed decision-making when managing high-risk pregnancies.[3] Ideally, suspicious ultrasound findings should be followed up by MRI, which may provide better resolution for diagnosing certain intrauterine disorders such as intracranial hemorrhage and skeletal abnormalities.[4],[5],[6],[7] Further, antenatal screening using amniocentesis and chorionic villus sampling may detect genetic and chromosomal anomalies such as aneuploidies that are important for accurate perinatal management.[8],[9],[10],[11]


   Legal and Human Rights Issues Surrounding Abortion in Africa and Globally Top


One morally acceptable option that maybe offered to women diagnosed with commonly or uniformly lethal fetal anomalies is the option of termination of pregnancy (TOP) or feticide in the mid or late trimester of pregnancy.[12],[13],[14],[15],[16] This could be partly based on beneficence-based obligations to the mother, fetus, and the child that it is likely to become,[16],[17] and doctor's moral obligations to society to use scarce healthcare resources judiciously for nonfutile treatment. TOP for severe fetal anomalies is supported by international laws against cruel and human punishment enshrined in the International Covenant on Civil and Political Rights (ICCPRs).[18] This was demonstrated in the case of KL v Peru.[19] Here, a woman diagnosed with being pregnant with an anencephalic fetus was denied TOP due to restrictive national abortion laws. She was forced to carry the pregnancy to term, and nurse the baby for few days before its demise. The United Nations Human Rights Committee (HRC) concluded that this amounted to cruel and inhuman punishment in violation of article 7 of the ICCPR. The HRC also found violations of articles 2, 17, and 24 of the ICCPR, which requires just administrative action by state parties to liberalize abortion laws, compensate victims for injuries suffered, and enjoined state parties to avoid its occurrence.[19],[20] In Africa, these HRC findings are consistent with protocol to the African Charter on the Rights of Women.[21] Article14 (2) (c) of the protocol enjoins African state parties,

"to protect the reproductive rights of women by authorizing medical abortion in cases of sexual assault, rape, incest, and where continued pregnancy endangers the mental and physical health of the mother or the life of the mother or the fetus."[21],[22]

This obligates African countries as signatories to the African Charter, to liberalize abortion laws and provide mechanisms for easy access, so that women can exercise the right of choice to TOP.[23] Even in Islamic countries with deeply held religious beliefs, it has been suggested that abortion maybe acceptable before the period of "ensoulment," i.e., before 120 days of gestation.[24] In countries with liberal abortion laws like South Africa, TOP is fairly straightforward because it is consistent with applicable local laws such as the choice on TOP Act 1996,[25] which allows women of any age to request TOP within the first 12 weeks of gestation without restrictions, it further allows late trimester abortion where the pregnancy is likely to endanger the woman's life, the fetus is severely malformed, or there is risk of severe injury to the fetus.[25] However, these options are based on informed consent of the pregnant woman. It must be noted that in the ethical and legal debate concerning TOP for fetal abnormalities, one needs to differentiate between degrees of abnormality. The challenge is to draw a distinction between severe commonly/uniformly lethal abnormalities, e.g., anencephaly,[12],[13],[14],[15],[16],[19] when compared to nonlethal or benign abnormalities, e.g., port-wine stain (nevus flammeus) which may cause cosmetic disfigurement in later life.[26] Unfortunately, the South African Choice Act [25] does not distinguish between lethal and nonlethal abnormalities and there is no normative list of what can be considered "severe fetal abnormality" that would satisfy the criteria for feticide/TOP. These difficult decisions are thereby left to clinicians and parents. The only requirement in South African law being that two qualified medical professionals must agree that the abnormality is severe enough to recommend feticide/TOP.[25] While liberal abortion laws maybe unavailable in all jurisdictions due to sociocultural or religious reasons, it is arguable that many African countries would benefit from liberalized abortion laws to minimize the incidence of unsafe abortions and improve maternal mortality and morbidity associated with restrictive abortion laws.[22],[23],[27],[28] The decision to offer TOP/feticide becomes more complicated in countries with restrictive abortion laws such as Nigeria and Kenya in Africa,[22],[23],[27],[28] Argentina and Peru in South America [19],[20] or even developed countries such as Australia [3] and Ireland.[29] TOP is also restricted in most Islamic countries.[24] TOP/feticide also becomes controversial where pregnant women decline this recommendation, resulting in the birth of a physically challenged child with severe physical or neurodevelopmental disorders. It has been argued that while there is a duty to respect the woman's autonomy based on constitutionally protected rights to bodily integrity and well-being,[30] there may also be beneficence-based obligations to a viable fetus regarding its wellbeing,[31],[32] as well as moral obligations on clinicians to prevent waste of scarce healthcare resources.[33] This may occur when scarce technological modalities such as artificial ventilation, incubators, etc., and trained manpower are deployed in the futile management of commonly lethal fetal anomalies, thereby denying access to other neonates, who maybe more amenable to treatment, the opportunity to benefit from these scarce resources. This supports arguments for withholding/withdrawing care and nonaggressive management of severely-disabled neonates in the interest of justice and equity,[32] consistent with recommendations of regulatory bodies like the Health Professions Council of South Africa.[33] However, such morally challenging decisions maybe opposed by the parents acting in their children's best interests.[32],[33],[34] Philosophical arguments in support of TOP/feticide for severely disabled babies include the principle of procreative beneficence and utilitarianism.[35],[36] While other ethicists have argued instead for the preservation of any type of fetus, regardless of disability, based on recognition of the inherent moral worth and dignity of human beings irrespective of biological differences.[35]


   "Wrongful Birth" and "Wrongful Life" Litigation Secondary to Fetal Anomalies Top


It is important to note that failure to provide proper antenatal diagnosis leading to delivery of a severely physically challenged baby could expose doctors to allegations of negligence and liability for "wrongful birth"[37] or "wrongful life."[38] The former is usually instituted by parents for the failure of antenatal diagnosis of fetal anomaly, leading to the birth of a physically challenged child. The latter cases are usually brought on behalf of disabled children for pain and suffering associated with living with such disability. Examples of such litigation include the South African cases of Stewart v Botha 2008,[39]Friedman v Glicksman 1996,[40] and Sonny and Another v PremierKZN 2010.[41] In the Botha case, the South African Supreme Court of Appeal (SCA) held that healthcare practitioners, who failed to detect and inform parents of a fetus' congenital anomalies so that they could have considered TOP, were liable to pay damages for "wrongful birth."[39] The SCA, however, distinguished between wrongful birth and wrongful life cases and did not allow a "wrongful life" claim on the same child, because the court held that the law cannot adjudicate on the questions of existentialism, "which would require a court to determine whether a child should have been born, since this goes to the heart of what it is to be human."[42] However, findings for wrongful birth and wrongful life have been made against doctors in more developed countries, although such verdicts may differ based on the concept of harm in various legal jurisdictions.[37],[38] Wrongful life cases are usually controversial and rarely authorized by the courts because of the concept of harm that maybe difficult to prove in such cases, it has been suggested that one needs to prove that one is harmed by being born with disability, which follows that it would have been better if the person were not to exist than to exist as a disabled person.[35] However, in a recent South African Constitutional Court case, a mother brought a suit on behalf of her child due to a physician's failure to diagnose and warn her of the "very high risk" of Down's syndrome, basing her argument on a novel category of "wrongful suffering," after a High Court had dismissed her application for "wrongful life," because it was unrecognized by South African laws.[42] In the Glicksmancase [40] the court held that failure by a specialist gynecologist to inform a patient that she was at a greater risk of having a child with congenital anomalies, leading to delivery of a physically challenged child, meant that the doctor was negligent and liable for damages. In the more recent case of Sonny v Premier KZN,[41] a court held that doctors at a KZN provincial hospital were negligent for failure to accurately diagnose potential Down's syndrome in an older woman at high-risk, advising her wrongly that the pregnancy was normal, thereby denying her the opportunity to request TOP. All the above cases are generally supported by rights enshrined in the South African Constitution and the Choice Act,[25],[43] which arguably gives mothers/parents the autonomy and privacy rights to decide whether or not to procreate. Therefore, doctors are under a legal obligation to inform prospective parents of the risk of a fetal anomaly in a fetus so that they can make an informed decision regarding TOP. Therefore, management of pregnancies with a diagnosis of severe fetal abnormality is fraught with many ethical, legal, and moral dilemmas for clinicians. On the one hand, doctors have a duty to respect women's right to autonomy and informed decision making, regardless of conscientious objection or clinical acumen. On the other hand, doctors may also have beneficence-based obligations to a viable fetus' well-being, irrespective of the parental choice on TOP.[31],[32],[35] Doctors are also obliged by professional ethics not to knowingly participate in futile treatment, where there is no foreseeable benefit to the parents, child, or society, to allocate scarce healthcare resources in an equitable manner, especially in resource-poor settings.[33],[34],[43] The two cases reviewed here were encountered during routine clinical practice at South African hospitals. They illustrate some of the conflicting ethical and moral dilemmas surrounding management of two live-born neonates delivered following declined and failed feticide for antenatally diagnosed ventriculomegaly (VM) and holoprosencephaly (HPE), respectively.

Case reports

Case 1: Neonatal ventriculomegaly following declined feticide

A 2500 g male neonate was delivered by elective cesarean section (C/S) at 36 weeks gestation due to twin pregnancy and central nervous system (CNS) anomaly. Apgar scores were 9 and 9 at 1 and 5 min. Therefore, there was no immediate postnatal resuscitation. The female twin was completely normal at birth, while the male neonate was noted to have macrocephaly, with occipital frontal circumference 37mm and normal crown-heel length (44 cm). He rapidly developed stridor with respiratory distress requiring intubation and ventilation 30 min postpartum. He was then transferred to a Neonatal Intensive Care Unit (NICU) for further management.

Antenatal history

Maternal obstetric history showed that the mother was 21-year-old, HIV-positive (CD4, 338/mm 3). She was G2P1 with another normal 4-year-old female child with a different consort. She was seen at antenatal clinic (ANC) 3 months previously where she was diagnosed with severe anemia (Hb 4.9 g/dl). She was treated by blood transfusion and routine fetal ultrasound confirmed twin pregnancy at 26 weeks gestation. While twin one (female) was normal, the index twin (male) had dilated lateral ventricles. ANC visits were notable for thrombophlebitis posttransfusion for anemia. The mother underwent a level 3 ultrasound at 28 weeks gestation that revealed suspected dichorionic diamniotic pregnancy, polyhydramnios, and confirmed that male twin had bilaterally enlarged cerebral ventricles of 29 mm/27 mm diameter, with no other abnormalities. The patient was counseled on poor prognosis for the second twin, but selective feticide could not be offered at this time due to uncertainty about chronicity. She was managed conservatively and reviewed at 31 weeks gestation when the dichorionic diamniotic placenta was confirmed. The dilated lateral ventricles were now measuring 29 mm/30.5 mm in diameter. There was also dilation of the third and fourth ventricles. Otherwise, the fetus was noted to be normal with appropriate growth. The mother was counseled on the poor neurological outcome of the male fetus and was offered selective feticide/TOP. She declined feticide of affected twin, and a planned C/S was performed at 36 weeks.

Neonatal history

The neonate spent a total of 16 days in NICU. He had upper airway obstruction with failed extubation twice. Bronchoscopy revealed a unilateral right vocal cord paralysis and bulbar palsy, supraglottic and glottic edema with small laryngeal airways. A tracheostomy was performed complicated by aspiration pneumonia necessitating re-ventilation. He remained oxygen dependent despite clear lung fields. Investigation of his macrocephaly by cranial ultrasound showed dilated ventricles with cerebellar hypoplasia [Figure 1]. MRI of the brain revealed VM, partial agenesis of the corpus callosum, a small posterior fossa, markedly hypoplastic cerebellum, a small cystic lesion posterior to the midbrain, and a soft tissue mass in left frontoparietal region laterally [Figure 2]. There was also right vertebral artery hypoplasia, with right parieto-occipital and frontal subdural hematomas [Figure 3]. Pediatric neurology review postulated that the pathology was most likely secondary to antenatal vascular insult, while the subdural hemorrhage was unexplained. The neurologists assessed the prognosis to be guarded with high risk for seizures and long-term neurocognitive deficiencies. Electroencephalography findings were consistent with encephalopathy. Brain activity was slow for gestational age with right more than the left and no epileptiform activity. Interpretation of the coagulation profile results of low Protein C/Protein S/Antithrombin III was reserved based on acute events and normal MRI venography. A repeat coagulation profile and MRI was recommended after 3 months with percutaneous feeding gastrostomy (percutaneous endoscopic gastrostomy) tube insertion if feeding became difficult due to bulbar palsy. Neurosurgery opted for conservative management and repeat imaging after 1 month. The baby was HIV-negative with no intrauterine infection on toxoplasmosis, rubella, cytomegalovirus, herpes virus, and others (TORCH) screen. Cardiovascular examination revealed a hemodynamically stable patent ductus arteriosus.
Figure 1: Computed tomography scan coronal section showing dilated ventricles and subdural hematoma in the fronto.parietal region. (white arrow)

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Figure 2: (a and b) Magnetic resonance imaging sagittal and frontal views showing ventriculomegaly, partial agenesis of corpus callosum, small posterior fossa, and hypoplastic cerebellum

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Figure 3: Magnetic resonance imaging angiography showing right vertebral artery hypoplasia with subdural hematomas in the right parieto.occipital and frontal regions

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Postnatal history

The child was transferred back to the referring hospital for weaning from oxygen with continued physiotherapy and tracheostomy care. However, he remained oxygen dependent, with apneic episodes, bronchospasm, and subclinical seizures. The mother received support from the medical, nursing, social work, and clinical psychology teams due to anxiety and depression. She was granted pass-outs on request to visit her children at home. During the mother's initial home visit, the child contracted nosocomial pneumonia and the mother felt intense guilt for having left hospital. She became hostile to clinicians and accused doctors of having counseled her to abort her healthy twin baby. Hence, she expressed a lack of faith in the medical profession. To assist with home support, doctors asked permission to involve the children's father in postnatal care. It emerged that the woman had not disclosed pertinent information to him, including her HIV status. She insisted she could provide the necessary care for her 3 children with assistance from their grandmothers. As the burden of care became overwhelming, she vacillated between asking for re-ventilation versus euthanasia for the baby. Eventually, her visits to the hospital became brief and infrequent. A multidisciplinary meeting was held to discuss further management as the child demonstrated marked neurological disability and was sometimes unable to obtain access to essential artificial ventilation due to resource limitations. At this juncture, a decision was made to provide palliative care and this decision was conveyed to the mother. She subsequently refused to visit the baby in hospital or undergo psychological counseling. The child had a prolonged apneic episode a week later and was not resuscitated. Baby demised in hospital after surviving for 9 weeks postpartum.

Case 2: Failed feticide for holoprosencephaly

Antenatal and neonatal history

A 2150 g male baby was delivered at 34 weeks gestation by induction of labor following two failed attempts at voluntary feticide. Feticide was recommended in consonance with guidelines outlined in the South African choice on TOP Act.[25] The procedure was performed by a qualified fetal specialist using an intra-umbilical potassium chloride (KCl ) infusion, at a Tertiary Care Centre. However, the procedure failed due to technical issues caused by placental positioning. Potential reasons for the failure of feticide and alternative techniques are discussed below. Indication for feticide was HPE detected on level-3 fetal ultrasound. Aneuploidy was excluded by amniocentesis. Both parents were aged 24 years and consented to feticide. The mother was G2P1 with a normal older child, HIV-positive (CD4, 590/mm 3). She was diagnosed with gestational diabetes, well-controlled on diet alone. The parents were counseled by the obstetric team that the baby was unlikely to survive long after induction of labor. The baby was delivered with good Apgar scores and did not require resuscitation at birth. He was transferred to the nursery in a stable condition with mild respiratory distress attributed to surfactant deficiency due to gestational age. Neonatal examination revealed multiple dysmorphic features including hypotelorism, a flat nasal bridge, upslanting palpebral fissures; thick epicanthic folds with midline cleft lip and palate, brachycephaly, polydactyly, overlapping fingers, and a micropenis. Parents refused consent for photographic documentation of gross features. This decision was respected due to confidentiality rules and other ethical and legal considerations. Neurological examination showed marked central hypotonia with normal primitive reflexes. The neonate had a weak sucking reflex and did not cry. He developed seizures 2 days postpartum and was treated with standard anticonvulsant therapy. Computed tomography scans of the brain showed fusion of the lateral ventricles with a resultant monoventricle. The septum pellucidum, falx cerebri, and the anterior interhemispheric fissures were not visualized [Figure 4]. The thalami were partially fused with intact corpus callosum. Optic nerves appeared atrophic while posterior fossa and fourth ventricle were normal with no cerebellar or vermal hypoplasia. These radiological and morphologic features were consistent with diagnosis of semilobar HPE.
Figure 4: Computed tomography scan of the cranium showing monoventricle with partially fused thalami and intact corpus callosum. NB: Final figures for publication supplied in JPEG in separate figure file

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Postnatal history

The neonate was managed by a multidisciplinary team including occupational therapy, social work, speech therapy, physiotherapy, palliative care team, clinical psychology, neurology, and plastic surgery who agreed to review at 3 months for repair of cleft lip and palate if feeding problems persisted. The mother received postnatal counseling about necessary neurological investigations and expected developmental and neurocognitive deficits. There was an outlook of abnormal neurologic progression manifesting with possible seizures and marked developmental delay. She was counseled regarding the dysmorphism, cleft lip, and palate, the need for cosmetic surgery and possibility of feeding by gastrostomy insertion if oral feeding could not be achieved. The mother bonded with and accepted her baby. She had good social support and demonstrated good understanding and insight, but was angry and mistrustful of the obstetric team, cautioning other expectant mothers in the ward by saying: "They tried to kill my baby." The baby was eventually weaned off oxygen while oral feeds were established with a specialized feeding teat. He was discharged 18 days postpartum in a stable condition. After that he was managed as an outpatient by specialized services including pediatric endocrinology and has survived with a marked neurological disability that is acceptable to the parents.


   Discussion Top


The decision to offer feticide/TOP to pregnant women with severe fetal abnormalities is both morally and ethically challenging and may lead to uncertain legal outcomes. The two cases reported here illustrate some of the ethical dilemmas around management of such clinical cases. In Case 1, a woman who initially refused recommended feticide was overwhelmed by psychological and physical fatigue, and the conflicting emotional and moral dilemmas associated with raising a physically challenged child while catering for her family. She was eventually relieved by the natural outcome of early neonatal death. In Case 2, a woman who was initially willing to accept recommended feticide later learned to bond with her severely physically challenged child, though the outlook is that of a shortened, poor quality life with severe neurocognitive deficits. There remains the possibility that in later life the parents may still sue doctors for "wrongful birth" or "wrongful life" because of the failed procedure for feticide,[37],[38],[39],[40],[41] when confronted by the reality of early demise, or the socioeconomic burdens of raising a physically challenged child.

VM is usually diagnosed by fetal ultrasound when lateral cerebral ventricle diameter is > 10mm.[44],[45] VM has been classified as mild (10–12 mm); moderate (12–15 mm) or severe (>15 mm)[44] or borderline and severe [45] based on ventricular diameter and associated neurological deficits, which may correlate with ventricular dilation. Moderate and severe forms have the poorest neurodevelopmental and survival outcomes.[44],[45] Genetic screening and karyotyping show that VM is associated with aneuploidies, especially trisomy 13, 18, and 21.[44],[45],[46] There are other chromosomal deletions and translocations associated with VM. However majority of cases have normal karyotypes while some pregnancies may present with polyhydramnios.[45],[47] Clinical outcome studies suggest that fetuses with mild VM require follow-up due to high risk of neurodevelopmental abnormalities,[48] which require genetic counseling of parents and monitoring of live-born babies.[47],[48] HPE is the most common defect of the human forebrain.[49] It occurs due to the failure of cleavage in the primitive forebrain (prosencephalon), during the 4–8th week of gestation, and is often associated with multiple midline facial anomalies.[50],[51] Incidence of HPE ranges from 1:16,000[50] to 53,394 live births,[52] but may occur 1 in 250 spontaneous abortions.[50] Based on the severity of brain abnormalities, HPE is classified into three major subtypes, lobar, semilobar, and alobar, with other minor subtypes including midline interhemispheric variant.[53] The most severe form is alobar HPE, where there is almost no cleavage in the prosencephalon, leading to the absence of interhemispheric fissures, falx cerebri, fused thalami, a monoventricle, with the absence of neurohypophysis and olfactory tracts. Semilobar HPE shows partial division with limited formation of the interhemispheric fissure posteriorly, monoventricle, partially separated thalami with the variant heterotopic gray matter. Lobar HPE is the least severe neurologically, with the partial division of the brain, interhemispheric fissure, and separate thalami.[53],[54],[55] The etiology of HPE is multifactorial with the implication of environmental and genetic factors suggesting a pathogenesis based on the multiple-hit hypothesis.[49],[50],[51],[52],[53],[54],[55],[56],[57],[58] Genetic factors identified include chromosomal abnormalities with single and multiple gene mutations.[50],[54],[56] Environmental factors include maternal diabetes mellitus, alcoholism, and intrauterine infection with micro-organisms including TORCH.[49],[53],[54] Here, the mother was diagnosed with gestational diabetes and HIV infection with uncertain etiological impact. Morphologically patients with HPE present with multiple facial abnormalities that may reflect the severity of brain defect, consistent with the observation that "the face predicts the brain."[49],[50],[51],[52] Clinical outcome of HPE is uncertain although most cases with alobar HPE have severe neurodevelopmental deficits with early childhood demise. Others with semilobar HPE have survived up to 10 years,[57],[58] while some may present with CNS endocrinopathies including neurogenic hypernatremia, or diabetes insipidus with severe neurodevelopmental disorders.[58] Prenatal ultrasound diagnosis has revolutionized the detection of major congenital anomalies. Although routinely used in most developed countries, it remains highly operator dependent and cannot be used as an isolated tool for investigating pregnancies presenting with intrauterine anomalies. In developing countries where access to fetal therapy and intrauterine interventions remain scarce, the only indication of an abnormality that can be demonstrated to a pregnant woman is by fetal ultrasound. However, since early diagnosis is critical for management, it would be prudent for clinicians practicing in Africa to pay special attention to basic clinical signs such as polyhydramnios, maternal diabetes, alcoholism, and advanced maternal age, as potential risk factors for fetal anomaly. Therefore, available tests for gestational diabetes, aneuploidies, and TORCH organisms should be routinely used to monitor suspicious cases. CNS anomalies seen during routine ultrasound screening sometimes remain of unknown clinical consequence, and may motivate parents to request TOP/feticide. Unfortunately, a normative list of fetal anomalies deemed justifiable for TOP/feticide has not been established or universally acknowledged,[19],[35],[43] thus, leaving difficult decisions regarding TOP to parents and clinicians. For example, while cerebral ventricular dilatation can be routinely diagnosed by trained clinicians, the only guidance regarding using ventricular diameter as a prognostic tool was provided by a study of 176 cases which suggested that ventricular diameters > 12 mm are more often associated with neurodevelopmental impairment than those < 12mm.[44] TOP/feticide for fetal abnormalities are often done to minimize stress and socioeconomic burdens to mothers/parents, which some have argued to be morally untenable.[35] Further, multiple pregnancies where one fetus has a severe anomaly present a different set of moral dilemmas. Risks to the normal fetus include the onset of premature labor, cerebral hypoxia, and death with higher risk to unaffected fetuses in monochorionic pregnancies.[16],[59]

In many jurisdictions, legal decisions regarding TOP/feticide are not usually based on best interests of the fetus. A pregnant woman's decision may be based on what is best for her family, cultural values, or belief systems. The expectant mothers' decisions regarding TOP and actual reactions toward the neonate after birth might be different. Fluctuating attitudes toward physically challenged infants are not uncommon. After birth, clinicians' priority should include best interests of the infant. If the parental wishes are contrary to the infant's well-being, they can be legally overridden in the child's best interest.[2],[12],[13],[14],[15],[16],[17],[43] In the VM case, the mother continued her pregnancy because she believed in her baby's right to life. However the burden of caring for a physically challenged child, and its impact on her family became reasons for seeking withdrawal of care. Further, the woman's autonomous decision to proceed with her pregnancy led to a misconception that she would also have the right to decide whether or not the child should receive supportive therapy. In resource-poor settings like in most African countries, decisions regarding the use of scarce healthcare resources are sometimes paternalistic. However, as shown in the Soobramoney case,[60] such decisions must be based on universally applicable criteria taking into consideration local constraints.[33],[43],[60] Other moral dilemmas involved in such cases are further illustrated by the HPE case, where the parents initially opted for feticide, but when this failed they grew to love and care for the child despite its disability.

The procedures used for feticide in this setting include ultrasound-guided administration of KCl as previously described,[61] or a variation involving injection into the umbilical cord at the point of placental insertion. Although uncommon, using this method maybe unsuccessful for several reasons, including technical expertise of surgeons, polyhydramnios, placental positioning, leakage of KCl , or spontaneous resumption of cardiac activity after initial asystole. Parents should be counseled regarding the possibility of failure to avoid conflict, and disruption of the doctor-patient relationship as occurred in the HPE case. Since management of patients with fetal anomalies involves multidisciplinary healthcare teams, it is important to consider all options and draw parents' attention to all material risks.[30],[43] Repeated counseling maybe necessary to allow for grief reactions of shock, denial, anger, and blame that accompany normal bereavement. It is advisable to consult early with all stakeholders who are involved in the birth and management of a disabled fetus or neonate, so that parents can take into account potential conflicts before arriving at a final decision.[16],[29] It has been suggested that management of pregnancies complicated by fetal abnormalities should involve bereavement midwives and use of perinatal hospice care.[29],[32] In jurisdictions with liberal abortion laws like South Africa,[25] clinicians are legally obliged to inform pregnant women of any fetal malformations with poor prognosis, and refer patients to appropriate healthcare providers for TOP, if the doctor has a conscientious objection in this regard.[12],[13],[14],[15],[16],[17],[25],[62] Ethically, clinicians should be guided by the principles of beneficence to minimize clinical harms to fetus/neonate and respect for the pregnant woman's autonomy. Obligations of beneficence to the fetus are unclear where it conflicts with autonomous decisions of a pregnant woman, although some bioethicists have suggested that obligations maybe owed to the infant which a viable fetus will likely become.[16],[31] However, the ability of the fetus to become a child/adult ultimately depends on the woman's decision whether or not to continue with her pregnancy. The fetus itself has no right of personhood until it is born alive, impaired or not, although this observation may not apply in jurisdictions that ascribe personhood to the fetus at conception.[29] It has been suggested that one does not have to assume personhood of the fetus to claim for its legal protection.[35] Others have argued that treating a fetus as a person with autonomous rights might mean treating pregnant women as individuals with less than full autonomy rights.[63] All of these controversies regarding women's rights versus fetal rights create conflicting moral quandaries regarding TOP/feticide and clinical management of neonates with severe congenital anomalies.


   Conclusion Top


Decisions to terminate a pregnancy based on fetal anomaly are only partly a medical decision and maybe considered a personal moral choice bound by legal rules, sociocultural values, and belief systems. Since there is no medical threshold for severity of fetal abnormality or social definition of what normally entails, the acceptability of a compromised life is highly dependent on the parental choice and capacity to cope with a child's disability within available personal resources and societal constraints. Clinical decisions regarding care should be made bearing in mind the best interests of the child irrespective of disability or neonatal outcome. The manner in which families are supported must be compassionate and guided by sound ethical principles, and local/international laws.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
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