PEDIATRICS Vol. 53 No. 2 February 1974, pp. 242-247
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Questions That Worry Children with Exstrophy

Todd Feinberg 1, John K. Lattimer M.D.1, Katherine Jeter 1, William Langford M.D.1, and Leah Beck M.D.1

1 Departments of Pediatric Urology and Psychiatry, Babies Hospital, Columbia-Presbyterian Medical Center, New York

It was apparent in the work with patients and their families that children who have exstrophy and epispadias have many more psychologic problems, particularly during adolescence, than the average child. The chief areas of conflict centered around wetness and concern for sexual adequacy. The anxieties of the children were also reflected in the parental attitudes.

In our opinion, there should be an ongoing guidance team which becomes involved with the family at the birth of the infant with this abnormality and which extends its services into young adulthood. The focus of the work should be to help these patients and their parents understand the nature of the problems. Guidance should be at many levels, from the care of the stoma to the inevitable emotional conflicts (Table IV).

At the Babies Hospital on the Columbia University Pediatric Urology Service, one of us (K.J. and family) has instituted a program of writing booklets for the information of the parent and the patient as to the best way to care for a stoma or a urine collection device. Booklets of advice and counsel for the parents are also being developed. Discussion groups are being set up with our nurses under one of us (L.B.) who is a child psychiatrist, to help parents and children ventilate their feelings and fantasies and to help them resolve some of their conflicts as to allow for maximal growth on the part of the child. In addition, in these groups counselling can take very concrete forms as to hobbies and activities for the children and even the best device for collecting the urine. The group tends to be very supportive of and helpful to its individual members.

Submitted on May 8, 1973
Accepted on September 10, 1973