SPINA BIFIDA—Is the Ethical Problem of the Doctor the same as that of the Family?

Contact ◽  
1973 ◽  
Vol 43 (1) ◽  
pp. 22-25
Author(s):  
Ruth Clayton
Keyword(s):  
Spina Bifida ◽  
Ethical Problem ◽  
The Family

THE FAMILY HISTORY OF SPINA BIFIDA CYSTICA

PEDIATRICS ◽  
1965 ◽  
Vol 35 (4) ◽  
pp. 589-595
Author(s):  
John Lorber
Keyword(s):  
Central Nervous System ◽  
Nervous System ◽  
Spina Bifida ◽  
Index Case ◽  
Progressive Increase ◽  
Point Of View ◽  
The Family ◽  
History Of ◽  
The Central Nervous System ◽  
Spina Bifida Cystica

1. The family histories of 722 infants who were born with spina bifida cystica were studied. 2. The index cases were referred for surgical treatment and were not selected in any way from the genetic point of view. 3. Intensive inquiries were made to obtain a complete family pedigree, including a prospective follow-up of siblings born after the index case. 4. Of 1,256 siblings 85 or 6.8% had gross malformation of the central nervous system: spina bifida cystica in 54, anencephaly in 22, and uncomplicated hydrocephalus in 9. 5. Of 306 children born after the index case 25 (8%) or 1 in 12 were affected. 6. There was a progressive increase in multiple cases in the family with increasing family size. In sibships of five or more, multiple cases occurred in 24.1%. 7. In 118 families cases of gross malformation of the central nervous system were known to have occurred among members of the family other than siblings. Cases occurred in three generations. 8. It is possible that spina bifida cystica might be a recessively inherited condition.

Counseling Parents of a Child with Meningomyelocele

1983 ◽  
Vol 4 (10) ◽  
pp. 317-321
Author(s):  
Claire O. Leonard
Keyword(s):  
Spina Bifida ◽  
Care Physician ◽  
Treatment Center ◽  
Full Time ◽  
Coordination Of Care ◽  
Prognostic Information ◽  
The Family ◽  
Social Treatment ◽  
Ongoing Support

The primary care physician has an important role in counseling families of children with meningomyelocele and providing ongoing support and coordination of care. A spina bifida treatment center will provide subspecialists in neurology, neurosurgery, orthopedics, urology, physical therapy, occupational therapy, nutrition, social work, and genetics. When the family does not live near a center, the pediatrician may fill many of these roles as well as that of team coordinator himself with the psychosocial and educational issues, as these are often forgotten by the multiple subspecialists seen by these children. The outlook for children with spina bifida is changing rapidly. The evolving medical, educational, and social treatment of individuals with meningronyelocele makes reliable prognostic information unavailable. Intelligence is usually normal and death due to renal insufficiency is extremely rare. A follow-up of surviving patients treated from 1928 to 1951 revealed that more than half were self-sufficient, full-time college students or housewives.7 With the improved outlook today, the majority of affected children can expect to become independent adults.

Wound Management of a Pediatric Spina Bifida Patient Secondary to a Canine-Inflicted Fifth-Digit Amputation: A Case Report

2021 ◽  
Vol 111 (3) ◽  
Author(s):  
Brittany A. Lovett ◽  
Cristóbal S. Berry-Cabán ◽  
Deanna E. Duran ◽  
Sharon P. McKiernan
Keyword(s):  
Emergency Department ◽  
Case Report ◽  
Spina Bifida ◽  
Human Infection ◽  
Further Education ◽  
Wound Management ◽  
Treatment Facility ◽  
Medical Treatment Facility ◽  
The Family ◽  
History Of

We present a case of a pediatric patient with a history of spina bifida who presented to the emergency department of a large Army medical treatment facility with a partially amputated right fifth digit she sustained while sleeping with the family canine. There are several reports in the popular press that suggest that an animal, particularly a dog, can detect human infection, and it is hypothesized that the toe chewing was triggered by a wound infection. This case provides an opportunity to provide further education in caring for foot wounds in patients with spina bifida.

La diagnosi e la gestione del prolasso rettale

2020 ◽  
Vol 39 (7) ◽  
pp. 453-457
Author(s):  
Silvia Ventresca ◽  
Micol Bacchini ◽  
Giulia Graziani ◽  
Federico Marchetti
Keyword(s):  
Cystic Fibrosis ◽  
Natural History ◽  
Spina Bifida ◽  
Rectal Prolapse ◽  
Newborn Screening ◽  
Complete Resolution ◽  
Toilet Training ◽  
Rare Occurrence ◽  
The Family ◽  
History Of

Rectal prolapse is an overall rare occurrence in children in the first 4 years of age. It typically tends to relapse. In the majority of cases it is not possible to highlight a single cause that determines prolapse, even if it is more frequent in children who suffer from constipation. In about 1 in 10 cases there is an underlying predisposing anatomical-neurological condition (in particular neurological: myelomenigocele, spina bifida occulta). A predisposing cause that must always be considered and excluded is cystic fibrosis, even in the age of newborn screening. Rectal prolapse management is conservative in most cases. Behavioural measures (correct toilet training, good hydration, diet rich in fibres) and the use of the macrogol laxative are fundamental. The prolapse that does not resolve spontaneously must be reduced manually by instructing the family on the technique to be used. In 90% of cases the natural history of rectal prolapse is favourable, with complete resolution within the first 4 years of age. After this age, it occurs more rarely. Surgery is rarely indicated. The current techniques that have a large consensus are sclerotherapy and laparoscopic rectopexy. The paper reports the management of recurrent rectal prolapse in a 3-year-old boy.

A Model for Ethical Problem Solving

2017 ◽  
Author(s):  
Robert M. Veatch ◽  
Amy Haddad ◽  
E. J. Last
Keyword(s):  
Problem Solving ◽  
Medical Error ◽  
Ethical Problem ◽  
Ethical Principles ◽  
Course Of Action ◽  
First Case ◽  
Step Model ◽  
The Family ◽  
Deceased Patient

Chapter 1 begins with a five-step model for analyzing a case posing ethical questions in pharmacy: (1) responding to a “sense” or feeling that something is wrong, (2) gathering information and making an assessment, (3) identifying the ethical problem, (4) seeking a resolution, and (5) working with others to choose a course of action. This five-step model is illustrated by the book’s first case, one involving reporting a possibly lethal medical error. A patient dies after mistakenly being given heparin intended for another patient. The case is followed by commentary applying the model and concluding with possible resolutions of the dilemma. The pharmacist might share the information with all those involved, including the family of the now-deceased patient, or tell only the pharmacist who prepared the drugs. The implications of the ethical principles involved, such as nonmaleficence and veracity, are explored.

ASSESSING THE IMPACT OF A CHILD WITH SPINA BIFIDA ON THE FAMILY

2008 ◽  
Vol 28 (1) ◽  
pp. 53-61 ◽  
Author(s):  
Marie C. McCormick ◽  
Edward B. Charney ◽  
Margaret M. Stemmler
Keyword(s):  
Spina Bifida ◽  
The Family ◽  
The Impact

scholarly journals Family functioning guidelines for the care of people with spina bifida

2020 ◽  
Vol 13 (4) ◽  
pp. 535-542
Author(s):  
Tessa K. Kritikos ◽  
Grayson N. Holmbeck
Keyword(s):  
Spina Bifida ◽  
Family Functioning ◽  
Family System ◽  
Child Outcomes ◽  
Vulnerability Factors ◽  
Fourth Edition ◽  
Future Directions ◽  
The Family ◽  
Clinical Questions ◽  
The Impact

Research supports a resilience-disruption model of family functioning in families with a child with spina bifida. Guidelines are warranted to both minimize disruption to the family system and maximize family resilience and adaptation to multiple spina bifida-related and normative stressors. This article discusses the spina bifida family functioning guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida, and reviews evidence-based directions with the intention of helping individuals with spina bifida achieve optimal mental health throughout their lifespan. Guidelines address clinical questions pertaining to the impact of having a child with spina bifida on family functioning, resilience and vulnerability factors, parenting behaviors that may facilitate adaptive child outcomes, and appropriate interventions or approaches to promote family functioning. Gaps in the research and future directions are discussed.

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