Babies with spina bifida treated without surgery: parents' views on home versus hospital care.

L’irruption des soins palliatifs en médecine périnatale

“…Parfois l'état de l'enfant permet d'envisager un retour à domicile ; on peut alors s'appuyer sur les équipes mobiles de soins palliatifs ou sur les réseaux spécialisés pour permettre une poursuite active de la prise en charge initiée à l'hôpital. Les parents seront informés qu'ils peuvent toujours revenir à l'hôpital si la situation se dégrade ou si elle devient pour eux insupportable [11].…”

Deliberate termination of life of newborns with spina bifida, a critical reappraisal

“…Acute pain Not any convincing evidence can be found in the literature that newborns with MMC actually do suffer from untreatable pain in the days after birth caused by their back lesion or by other complications. A pediatric surgeon who devoted much of his professional life of more than 30 years to the treatment of those who have been born with spina bifida stated: “I personally have seen little evidence that the babies have pain in the newborn period, nor have I found them unable to sleep.” [ 79 ] Delight and Goodall (1988; 1990) [ 17 , 18 ] studied the experiences of parents of 44 children born with MMC, all managed without any surgery. All 44 children died before their first birthday.…”

“…Only a quarter of them did require some medication such as analgesics and anticonvulsants; half of them were given drugs in the dying period. Analgesics were given in a low dose simply to enhance their quality of life [ 17 , 18 ].…”

Dutch doctor convicted of murdering disabled infant

“…All these points were illustrated in a paper that a colleague and I wrote in 1988 2. To ignore the normal reaction to grief and to destroy the opportunity for parents and the child to have even a brief time to enjoy each other is to sow a legacy of chronic emotional pain.…”