Deb's Story

[Published in ALIAS in mid-2000 and early 2001]

A US mother emailed (Jan 2000):

First of all I want to say what a WONDERFUL website this is! What a great opportunity to read and share personal experiences!! I was really inspired and impressed by the young people [on the ‘Personal Stories’ page]; Rachel, Anabelle and Sasha. I was also glad to hear [on that page] from another mother, Alberta, and wonder “where are the other parents?”

My six month old daughter has mixed gonadal dysgenesis. Her karyotype is 46 XY. The external genitalia is female, with what the Doctors have termed a "moderately" enlarged clitoris. She has no uterus, a short vagina and one undescended gonad which they want to remove before her first birthday. The doctor/surgeon is also recommending a clitoral recession, to tuck it back, but not reduce the size by removing anything. My husband and I are really torn about whether or not this is really necessary. We are also having a hard time deciding whether or not we should share any of this information with our families. The reasons being: 1) they may not be able to support us and 2) we want our daughter to learn from us, not a relative.

Please feel free to print this info. online and/or in your newsletter. Any feedback would be helpful for us. Thanks.

We asked (April 2000) if she’d contact a mother in Switzerland who attended the recent German group meeting and who wasn’t sure about allowing surgery on her baby (and whose doctors had told her there were no other cases of AIS in Switzerland! Yeah... right.... dream on).

She replied:

I would love to talk to them, although we already decided that we would not have any cosmetic surgery done. I've spoken to numerous families and Doctors over the past few months. Also read many articles. Feel free to send any parents my way!! I'm in Michigan. USA.

She sent us this account in Nov 2000 for publication in ALIAS No. 18, Spring 2001:

Thanks again for this opportunity to share with others!!

As first time parents, we were naturally excited when our “daughter” was born. (She is now 1½ years old). At that time her clitoris was slightly enlarged, but no one thought anything of it because she was premature and the doctors said that such swelling was normal. Approximately one week after her birth, genetic testing revealed our child was 46 XY and she was diagnosed with MGD (Mixed Gonadal Dysgenesis). A mix of emotions surfaced for us; sadness, frustration and confusion.

The surgeons attempted to console us by recommending cosmetic surgery, including a clitoral recession to “normalize” the size of her “moderately enlarged” clitoris. They suggested this be done at one year of age, while at the same time, removing her one undescended gonad. They also recommended a vaginoplasty and hormones at puberty. The endocrinologist was not much help either, saying only to do “whatever the surgeons recommend”.

Without any tangible education or support, we set out on our own.... We found helpful information on various websites including AISSG, ISNA and ISGI. We met with Cheryl Chase of ISNA who provided numerous articles and put us in touch with several parents. We spoke to Deborah Brown of ISGI at length on the telephone and were encouraged by her faith and trust in our Lord. We met with Bruce Wilson, M.D., an Endocrinologist at Devos Children's Hospital in Grand Rapids, MI and spoke to his colleague, William G. Reiner, M.D. a Psychiatrist at Johns Hopkins University.

Some of the articles we read included Management of Intersex: A Shifting Paradigm ^{[Ref 1]} by Bruce E. Wilson and William G. Reiner; Rethinking Treatment for Ambiguous Genitalia  ^{[Ref 2]} by Cheryl Chase; and Care and Counseling of the Patient with Vaginal Agenesis ^{[Ref 3]} by Sallie Foley, ACSW and George W. Morley, M.D.

Ref 1: This article is in Dreger A. (Ed.): Intersex in the Age of Ethics (see our AIS in Books/Articles page).

Ref 2: See http://www.isna.org/articles.

Ref 2: See http://www.isna.org/articles/foley-morley.html.

After much reading, discussion, consultation and prayer, we have decided not to have the clitoral recession done. We did decide to have the gonad removed, which is scheduled for next week. It is evident now, that our child will develop a sexual identity within the next few years. What she decides remains unknown to us for now, but that is okay, because we love her and will accept whatever decision she makes.

Our main concern has been discussing these issues with others. We wanted to educate ourselves first and then select trusted friends and family members. We may be being too particular, but we want to protect our child from people in our lives who may treat her differently. Any feedback others can give us would be greatly appreciated. We hope this is helpful for other parents and would welcome any feedback.