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For example what about girls when they become young ladies? What and how do we deal with them? Not much has been studied and or published about Down syndrome and adolescent gynecological problems. There are very few studies and certainly not many of them have any honest relevance to an orthodox Jewish lifestyle.

None the less we should still proceed with exploring estrogen replacement therapies for women who have Down syndrome. For example, is this different in young women with Down syndrome than from the general population? How will this type of therapy affect something like Alzheimer disease? Will it improve mental functioning in later years?

Or what about issues surrounding menopause? These must be different in young women who have Down syndrome but how?

How do we properly handle and prepare our young girls who have Down syndrome for the onset of menses in adolescents?

Then there are always issues surrounding marriage, motherhood, parenting, etc. While these are often only rare occurrences they do present families with issues that must be fully discussed and dealt with properly. And more importantly what will be the incidence of these kinds of relationships in the years ahead?

It is well documented that women who have Down syndrome are capable of reproduction. Several studies even went so far as to document the pregnancies of women with Down syndrome.

The results were quite interesting. For example it has always been thought that if a women with Down syndrome were to marry a man who did not have the syndrome there would be a 50-50 chance for their offspring to have Down syndrome as well.

As it turns out (Bovicelli, Orsini, Rizzo, Montacut, and Bacchetta [1982]) demonstrated that of 30 pregnancies in women who had Down syndrome whose husbands did not have trisomy 21 only 10 infants were born with Down syndrome, 18 did not have Down syndrome (one set of twins), and there were two who had spontaneous abortions.

These results clearly demonstrate that the 50% rule (Kreutner 1981) is not factual. These studies have been duplicated more recently with the same results (Rani, Jyothi, Reddy, and Reddy 1990) reporting on 31 pregnancies

Unwanted pregnancies are a legitimate concern of parents and there is a need for open and honest discussions about these concerns. Gynecological counseling should most certainly take into consideration the parents wishes with respect for their ethical guidelines.

These are all issues that need to be properly and thoroughly explored taking into account syndrome, expectations, halachic realities, and medical realities.

Bibliography:

Bovicelli, L, Orsini, L F, et al, 1982, Reproduction in Down syndrome. Obstetrics and Gynecology, 59, 13S-16S.

Elkins, T E, Hoyle, D, et al, 1988, The use of societally based ethics/advisory committee to aid in decisions to sterilize mentally handicapped patients, Adolescent and Pediatric Gynecology, 1, 190-194.

Kreutner, A K, 1981 Sexuality, fertility, and the problems of menstration in mentally retarded adolescents. Pediatric Clinics of North America, 28, 475-485

Rani, A S , Jyothi, A, et al, 1990, Reproduction in Down syndrome, International Journal of Gynecology and Obstetrics, 31, 81-86.

Minihan, P M, and Dean, D H, 1990, Meeting the needs for health services of persons withmental retardation living in the community. American Journal of Public Health, 80/9, 1043-1048.