Active euthanasia for perinatal osteogenesis imperfecta; an ethical dilemma in a tertiary facility in Southwestern Nigeria: A case report

Abstract

Managing a newborn with lethal congenital anomalies is challenging but handling a parent’s request for doctors under
oath to terminate the baby’s life is another major ethical dilemma requiring cautious evaluation. We present a term male
neonate who presented on the 7th day of life, with a dark-blue sclera, multiple limb deformities, long bone fractures,
beaded ribs, a flattened forehead, a narrow chest, and respiratory distress. A Diagnosis of Type II Osteogenesis
imperfecta was made and he was managed by a multidisciplinary team including neonatologists,
geneticists/endocrinologists, orthopaedic surgeons, nurses, and medical social workers. Supplemental oxygen,
intravenous fluids and antibiotics, analgesia, and bisphosphonates were offered as supportive care. The main concern
was the challenges of managing a newborn with lethal OI and balancing the demand for euthanasia by the parents to end
the baby’s misery. In providing care, the rights of the child to life, the morals of the physician, the best interests of the
baby, and the family's role in decision-making in a setting of out-of-pocket expenditures must be weighed. Following
extensive multidisciplinary team meetings, it was ultimately decided to allow nature to take her course. Baby
subsequently had progressive respiratory distress from pulmonary hypoplasia and died of respiratory failure on the
twelfth day of life. In Conclusion, Osteogenesis imperfecta of the perinatal type is usually a lethal disease, with death
often occurring within the perinatal period. The physician must, therefore, balance the parental rights, the oath of office,
and the existing legal framework to avoid charges of murder or manslaughter.