OBJECTIVE: In a worldwide debate on deliberately terminating the lives of newborns, proponents point at newborns with very severe forms of myelomeningocele (MMC) and their assumed suffering, claiming there are no effective means of alleviating their distress. Nevertheless, the degree of discomfort and pain in these newborns has never been assessed in a structured manner. METHODS: In a prospective cohort study, 28 consecutive newborns with MMC were included over a 5-year period and were followed up throughout their hospital stay for initial treatment. We created 2 disease severity groups on the basis of the Lorber criteria. The primary outcomes were discomfort and pain, assessed by simultaneously scoring 2 validated scales: the visual analog scale for pain and the Comfort Behavioral Scale for discomfort. These scores were coupled to a validated and evidence-based analgesia algorithm. RESULTS: Overall, discomfort related to pain was measured in 3.3% of the scores. This percentage differed little between the preoperative and postoperative periods and did not significantly differ between newborns with less severe MMC and severe MMC (3.9% vs 2.8%; P = .3). The mean dosage of paracetamol was 35 mg/kg per day (95% confidence interval: 32-39); the mean dosage of morphine was 0.9 μg/kg per hour (95% confidence interval: 0.6 -1.2). CONCLUSION: Over the length of their hospital stays for initial treatment, all newborns with MMC presented with low levels of discomfort and pain independent of disease severity and time frame. Copyright

Additional Metadata
Keywords Decision-making, Infant, Newborn, Pain measurements/standards, Spinal dysraphism/therapy
Persistent URL dx.doi.org/10.1542/peds.2011-1645, hdl.handle.net/1765/75119
Journal Pediatrics (English Edition)
Ottenhoff, M.J, Dammers, R, Kompanje, E.J.O, Tibboel, D, & Rob De Jong, T.H. (2012). Discomfort and pain in newborns with myelomeningocele: A prospective evaluation. Pediatrics (English Edition), 129(3). doi:10.1542/peds.2011-1645