Spinal fusion in girls with Rett syndrome: post-operative recovery and family experiences

Child: Care, Health and Development
C MarrJenny Downs

Abstract

Rett syndrome is a severe neurodevelopmental disorder mainly affecting females and scoliosis is a common co-morbidity. Spinal fusion may be recommended if the scoliosis is progressive. This qualitative study investigated recovery of girls with Rett syndrome during the first 12 post-operative months and explored family perspectives and coping around the time of surgery. Parents registered with the population-based Australian Rett Syndrome Database were recruited to this study if their daughter had a confirmed pathogenic MECP2 mutation and spinal fusion between 2006 and 2012. Twenty-five interviews were conducted to determine their daughter's recovery and parental stresses and coping. Themes in the interview data were identified with content analysis, and the regaining of gross motor skills over the first 12 post-operative months was described with time-to-event (survival) analysis. Pain and energy levels, appetite, mood and coinciding health issues influenced their daughter's post-operative recovery. The majority of girls recovered preoperative sitting (88%), standing (81%) and walking (80%) by 12 months. The decision to proceed with surgery was associated with feelings of fear, obligation, relief and guilt for families. Develop...Continue Reading

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Citations

Dec 15, 2015·Developmental Medicine and Child Neurology·Jenny DownsUNKNOWN Rett syndrome spinal fusion group
Jun 1, 2016·Journal of Paediatrics and Child Health·Jenny DownsHelen Leonard
Aug 6, 2016·Wiener medizinische Wochenschrift·Jenny Downs, Helen Leonard
Aug 26, 2016·Disability and Rehabilitation·Michelle StahlhutEva Nordmark
Dec 23, 2016·Journal of Applied Research in Intellectual Disabilities : JARID·Janet RobertsonChris Hatton
Dec 27, 2018·International Journal of Environmental Research and Public Health·Domingo Palacios-CeñaJavier Güeita-Rodriguez
Jan 22, 2019·Scandinavian Journal of Occupational Therapy·Åsa-Sara SernheimG M Liedberg
Jun 30, 2019·The Journal of Pediatrics·Brigid GarritySara Singer
Jul 24, 2021·American Journal of Medical Genetics. Part a·Anne-Marie BisgaardMichelle Stahlhut

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