Prognosis for babies with meningomyelocele and high lumbar paraplegia at birth
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Parental involvement in early care significantly impacts life expectancy for infants with paralytic lumbar meningomyelocele not receiving immediate surgery. Family-centered care can lead to survival to school entry, with no subsequent deaths observed in one study.
Area of Science:
- Pediatrics
- Neurosurgery
- Developmental Pediatrics
Background:
- Infants diagnosed with paralytic lumbar meningomyelocele face critical treatment decisions at birth.
- The long-term outcomes for these children are often linked to the chosen management strategy, including surgical intervention.
- Parental involvement and care approaches are increasingly recognized as influential factors in child development and survival.
Purpose of the Study:
- To investigate the influence of parental involvement and family-centered care on the life expectancy of infants with paralytic lumbar meningomyelocele who did not undergo immediate surgery.
- To compare the functional and intellectual outcomes of children managed with family-centered care versus those who received immediate surgical treatment.
Main Methods:
- Retrospective analysis of 27 infants with paralytic lumbar meningomyelocele treated between 1971-1980 at a single institution.
- Focus on children who were not offered immediate surgery at birth but received family-centered care.
- Assessment of survival rates to school entry, long-term mortality, functional status (mobility, continence), and intellectual development.
Main Results:
- Eight out of 27 children (29.6%) receiving family-centered care and not immediate surgery survived to school entry.
- None of the children in this group have died since reaching school age.
- While all survivors are chairbound and incontinent, none exhibit intellectual retardation, and many have comparable handicaps to those who received immediate surgery.
Conclusions:
- Parental involvement and family-centered care can positively influence the survival and developmental outcomes for infants with paralytic lumbar meningomyelocele.
- The decision regarding immediate surgery for these infants does not necessarily need to be presented as an immediate life-or-death choice.
- Long-term quality of life, including functional independence and cognitive development, should be considered alongside immediate survival in treatment planning.
Abstract:
The life expectation of babies with paralytic lumbar meningomyelocele not offered immediate surgery at birth appears to be influenced by the extent to which parents are involved in the child's early care. 8 of the 27 children offered family-centred care in one hospital in 1971-80 and not offered immediate surgery survived to school entry and none of these children has since died. All are chairbound and incontinent, but none is intellectually retarded and many are no more handicapped than the children offered immediate surgical treatment at birth. The choice before the family at birth does not have to be presented as an urgent and immediate choice between life and death.