Preventing birth defects, saving lives, and promoting health equity: an urgent call to action for universal mandatory food fortification with folic acid.

July 20, 2021 marked the 30th anniversary of the publication of the landmark trial by the British Medical Research Council showing unequivocally that maternal intake of folic acid (vitamin B9) starting before pregnancy prevents most cases of infant spina bifida and anencephaly-two major neural tube defects that are severe, disabling, and often fatal. Mandatory food fortification with folic acid is a safe, cost-effective, and sustainable intervention to prevent spina bifida and anencephaly. Yet few countries implement fortification with folic acid; only a quarter of all preventable spina bifida and anencephaly cases worldwide are currently avoided by food fortification. We summarise scientific evidence supporting immediate, mandatory fortification with folic acid to prevent the development of spina bifida and anencephaly. We make an urgent call to action for the World Health Assembly to pass a resolution for universal mandatory folic acid fortification. Such a resolution could accelerate the slow pace of spina bifida and anencephaly prevention globally, and will assist countries to reach their 2030 Sustainable Development Goals on child mortality and health equity. The cost of inaction is profound, and disproportionately impacts susceptible populations in low-income and middle-income countries.

Program Evaluation of Camp V.I.P: Promoting Self-confidence and Independence for Patients with Spina Bifida.

PURPOSE: Camp V.I·P (Victory, Independence, Possibilities) was established by the Spina Bifida Association of Alabama in 2012. The goal is to provide children with spina bifida (SB) and their families a traditional-style summer camp focusing on self-empowerment and fostering independence in medical self-management. DESIGN AND METHODS: Part 1 of this study describes Camp V.I·P. structure. Part 2 describes an online survey to caregivers of campers gauging camp effectiveness and value and evaluating perceptions of confidence/independence and family connections. Camper characteristics were compared to the overall SB clinic population. RESULTS: 63 children with SB, 81 siblings, and over 100 caregivers have attended camp. Campers are similar to the overall clinic population in race, gender, and ambulation status. At camp, there are significantly more children with myelomeningocele (versus other spinal dysraphism) and lumbar functional level (versus thoracic). Survey results show that confidence grew in 93% of campers, and 86% gained greater independence. Parents stated that they created lifelong friendships. The majority of caregivers (91%) indicated "certainty" that they would attend camp again. CONCLUSION: Camp V.I·P is a family-centered environment that emphasizes respite, nurture, and the continuum between family and clinic. Our research shows that camp can be a useful tool to aid in independence, confidence, and social adaption. PRACTICE IMPLICATIONS: Camp has become an integral part of our comprehensive care of children with SB and has been shown to reinforce what is taught through the clinic by creating trust between the care team and campers.

Coping strategies used by caregivers of children with newly diagnosed brain tumors.

In BriefThe authors interviewed families whose children had recently been hospitalized with a new brain tumor. From these interviews, they identified parents' coping strategies for handling the stress of having a child with a newly diagnosed tumor. Some strategies are considered "adaptive" and help parents deal with the stress better. Others are "maladaptive," leading to worse outcomes. Parents of children with brain tumors are at risk for maladaptive coping. Efforts to teach parents how to cope effectively with the stress of a sick child have the potential to improve outcomes.