Hydrocephalus Canada

Research from the Medical Journals-2011

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Randomized MOMS trial reveals definite benefits but also risks of fetal surgery

Babies who undergo an operation to repair the birth defect Spina Bifida while still in the womb develop better and experience fewer neurologic complications than babies who have corrective surgery after birth, according to findings from the major multicenter Management of Myelomeningocele Study (MOMS).

Those who received prenatal surgery were half as likely to have a shunt, and eight times as likely to have a normally positioned brainstem. There was “much better motor function of the legs,” Dr. Adzick said, and at 30 months old, nearly twice as many walked without crutches or orthotics.

But there were also medical downsides for the women and infants: greater risk of prematurity than the postnatal group, related breathing problems, and thinning or tearing at women’s surgical incisions, requiring Caesarean sections for later births.
NEJM  10.1056/NEJMoa1014379

Correlation of spine deformity, lung function and seat pressure in spina bifida
All patients displayed a reduced forced vital capacity, but this reduction was not related to increasing scoliosis. The smaller scoliosis curves and lesser degrees of pelvic obliquity were associated with larger areas of low seated pressures.
Clin Orthop Relat Res DOI 10.1007/s 11999-010-1687-8

Use of a decision aid for prenatal testing of fetal abnormalities to improve women’s informed decision making: a cluster randomised controlled trial
A tailored prenatal testing decision aid plays an important role in improving women’s knowledge of first and second trimester screening tests and assisting them to make decisions about screening and diagnostic tests that are consistent with their values.
BJOG 2008;115:339-347

The efficacy of latex avoidance for primary prevention of latex sensitisation in children with spina bifida
In this small study avoidance of natural rubber latex reduced the prevalence of latex sensitivity 6-fold. This result supports the American Academy of Allergy, Asthma, and Immunology’s recommendation that children with spina bifida avoid natural rubber latex whether or not they are allergic to it.
J Pediatr 2002;140:370-372

Longitudinal study on specific IgE against natural rubber latex, banana and kiwi in patients with spina bifida
In most cases the sensitisation to banana and kiwi fruit follows the natural rubber latex sensitisation. There is no need for people with spina bifida without latex allergy to avoid tropical fruit.
Klin Padiatr 2011

Treatment of myelomeningocoele: a review of outcomes and continuing neurosurgical considerations among adults
Surviving adults with myelomeningocoele achieve a wide range of neurological and functional outcomes, the most critical and adverse determinant of which is symptomatic CSF shunt failure. From a neurological standpoint, adults with myelomeningocoele remain clinically active indefinitely, and they deserve periodic neurosurgical surveillance.
J Neurosurg Pediatrics 2010;6:515-525

Quality of life and myelomeningocoele: an ethical and evidence-based analysis of the Gronigen Protocol
The Gronigen Protocol for Euthanasia in Newborns was established by a group of paediatricians in the Netherlands in 2001. The Protocol is a set of guidelines for assessing newborns who are deemed to be in unbearable suffering and for whom the future is felt to be hopeless. To date 22 newborns with spina bifida (and only those 22) have been euthanased with lethal injection.

The author of this article argues that the implementation of the protocol is not based on solid evidence for the specific newborns concerned. Deciding that any non-terminally ill patients have ‘no prospect for a future’ is a dangerous precedent to set. Whatever the intentions of those involved, however, active non-voluntary euthanasia in neonates born with spina bifida must be condemned as unethical.
Pediatr Neurosurg 2010;46:415-416

Tell the Truth about spina bifida
Physicians who routinely tell pregnant women that their foetus with spina bifida will have severe mental disabilities, never walk, and suffer bladder and bowel continence are ignoring a wealth of recent literature that contradicts this stereotype. This editorial provides the most recent stats on the functioning of children born with spina bifida today.
Ultrasound Obstet Gynecol 2004;24:595-6

Fractures in myelomeningocoele
There is a significant trend towards more fractures with respect to increasing level of paralysis. The risk is six-fold higher for thoracic paralysis than for sacral level paralysis. Also at a thoracic level of paralysis, mainly femur fractures occurred (81%) compared to mainly tibial fractures for lumbar level paralysis.
J Orthopaed Traumatol 2010;11:175-182

Trajectories of psychosocial adjustment in adolescents with spina bifida: a 6-year, four-wave longitudinal follow-up
Some differences between preadolescent children with SB and those without continue through adolescence. In particular, academic and attention problems and difficulties with social problems continue. Also girls appear to be at risk for escalating social and physical appearance difficulties as they navigate the adolescent period.
J Consul Clin Psychol 2010;78(4):511-525