Deliberate termination of life of newborns with spina bifida

Abstract

A huge ethical dilemma in medicine has always been the conflict between the “sanctity” and “quality” of life. Such issues particularly occur at both ends of life, in the elderly and newborn. Decisions have to be made by others, including family, physicians, and sometimes lawyers. Myelomeningocele is a well-recognised, but not the only, example where such dilemmas occur. Dilemmas concerning the management of irreversible head injuries, compromised neonates with multiple organ failure, conjoined twins, and many other conditions are familiar to neurosurgeons. This is why the scholarly paper by Dr. Rob de Jong is so important and a “must-read” for us all. Non-treatment of defective infants or “infanticide” has been practiced in several cultures throughout history for a variety of reasons. These have included physical abnormalities, illegitimacy, population control and infants with undesirable sex. Infanticide is referred to in the Bible (Isaiah 57:5), and Plato in The Republic supported the intentional exposure of sickly babies. In the case of newborns with myelomeningoceles, Dr. de Jong reviewed the history of their treatment. He quoted the 1971 paper from Dr John Lorber, a paediatrician, describing the famous “Adverse Criteria” based on the results of surgical treatment of 524 cases in Sheffield. There followed a trial of no treatment in 25 infants with these criteria, and all but two died within 6 months, the remainder by 9 months. This had a profound effect on medical management in the UK where “selection” for these infants became the standard policy, although not really accepted by colleagues in the USA. Later, the issue was reopened when several centres reported cases where the early decision not to operate had been reversed when the children survived. An important study from Dublin [1] showed that babies being treated “expectantly”, who were going to die, did so in the first 3 months. The view became that early surgery was not always necessary, and immediate back surgery could be reserved for the good-prognosis group. Initial conservative treatment was advocated for the more severe cases, and providing the hydrocephalus was effectively treated, surgery to the back could be safely deferred. It has to be remembered that the surgical care for infants with spina bifida in the UK and many European countries had been under paediatric general surgeons. With few exceptions, neurosurgeons at that time did not consider the treatment of these infants as “proper neurosurgery”. This responsibility now in most centres involves paediatric neurosurgeons, but the dilemmas are the same. Many physicians recognise a spectrum of severity for most conditions, whether acquired or congenital. For any treatment to be worthwhile, it should improve upon the natural history of the condition. There are cases of myelomeningocele, very small in number, where the severity of the lesion is such that survival is most unlikely, and there may be a role for non-intervention. I recall a neonate whose open myelomeningocele contained prolapsed rectum. The feet were deformed, there was no leg movement, and the hydrocephalus was established. After consultation with many colleagues of different religions and discussion with parents, the decision was agreed to withhold antibiotics. This baby died after 24 h. Dr. de Jong quotes a paper in 2003, describing a similar outcome to a Childs Nerv Syst (2008) 24:35–36 DOI 10.1007/s00381-007-0481-8