Custody of the Myelodysplastic Child: Implications for Selection for Early Treatment

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Abstract
Of 173 patients with myelodysplasia followed in the Birth Defects Center at University Hospital between 1968 and 1972, 30 (17%) have been placed outside their natural families for temporary or long-term care. Only one has been adopted and five have been institutionalized; the remainder have been in foster home care. High level paralysis, mental retardation, and lower socioeconomic status correlate positively with placement. In this series, gender was not a contributory factor. An initial "hopeless" prognosis and/or selection for "no treatment" were decisions often made prior to referral to this center but were highly correlated to placement. Considering the multiple medical, emotional, and economic problems facing these families, relinquishment of custody should be anticipated in a significant percentage of cases. To date, placement outside the natural family has been viewed primarily as abandonment or as an emergency solution to a crisis. Long-term follow-up study of this group of children may indicate that transfer of custody can be a positive therapeutic alternative for the child and his family.

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