Spina bifida: Keeping fit when you are in a wheelchair
Amelia Taylor-Ash trains at the gym with personal trainer Joe and isn't looking back.
Misty Diaz showed no fear as she lined up for the Red Bull 400, a brutal foot race straight up the Olympic ski jump in Park City, Utah.
CONCLUSIONS: High prevalence of restrictive pulmonary physiology is present in people with SB, with more rostral neurological levels and greater degree of scoliosis associated with a higher degree of pulmonary function impairment. PMID: 30741703 [PubMed - in process]
Bethan Simpson's daughter Eloise had a "foetal repair" carried out at 24 weeks after a spina bifida diagnosis.
Publication date: Available online 11 February 2019Source: Preventive MedicineAuthor(s): Vijaya Kancherla, Aliki P. Weakland, Sunny Y. Xu, Salimah R. WalaniAbstractThe People and Organizations United for Spina Bifida and Hydrocephalus (PUSH!) Global Alliance created scorecards to rate country-level performance on spina bifida, including folate status among women of reproductive age; birth prevalence and mortality associated with spina bifida; prevention strategies; access to care; and the country's engagement in the UN Convention on the Rights of Persons with Disabilities. A total of 187 countries were examined based on a ...
Bethan Simpson, 26, of Burnham, Essex, was first advised to terminate her pregnancy when doctors discovered her baby had the birth defect spina bifida during her 20-week scan.
ConclusionFirst-trimester screening using four serum markers only can be carried out in India. Performance is expected to be similar to the second-trimester Quad test and will also facilitate early screening for preeclampsia and open spina bifida. A protocol of NT plus the four serum markers enhances the performance compared with NT, PAPP-A and free β-hCG.
Conclusions: Long-term outcomes are not associated with hip status in adult patients with myelomeningocele. Functional outcomes are more closely correlated with neurological level and hip range of motion. These results suggest efforts to keep myelomeningocele hips reduced are likely without functional benefit and should be avoided in favor of maintaining motion with contracture release as needed. Level of Evidence: Level III.
From time to time, SPN Department pages will provide readers with references or updates detailing best care practices or specific guidelines published by organizations or work groups focusing on various aspects of care to promote improved quality of life for the child and family. As more and more has been learned about the trajectory and potential long-term effects of the numerous congenital conditions the focus of care has gradually shifted from treatment of symptoms to prevention of untoward outcomes and providing resources directed to improving quality of life.
BACKGROUND Prenatal myelomeningocele repair by open surgery can improve the neurological prognosis of children with this condition. A shift towards a fetoscopic approach seems to reduce maternal risks and improve obstetric outcomes. OBJECTIVE The aim of this study was to report on the anaesthetic management of women undergoing prenatal open or fetoscopic surgery for neural tube defects. DESIGN A retrospective cohort study. SETTING Prenatal myelomeningocele repair research group, Vall d’Hebron University Hospital, Spain. INTERVENTION Intra-uterine foetal repairs of spina bifida between 2011 and 2016 were...
This manuscript sought to investigate the role of health literacy and a variety of sociodemographic factors and readmission and complication rates after complex GU surgery in a small but high-risk population of patients with neurogenic bladder. Nearly half of the patients were spinal cord injured (SCI), one-fourth had spina bifida (SB), and the remainder either had a degenerative neuromuscular disease or were unspecified. While all of these diseases can result in a similar bladder phenotype, and therefore similar surgical treatments, the populations are vastly different.