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1999-08-06-16 What do children know? © Clara www.thefetus.net/


. 2 weeks .. 1 year

What do children know?

Clara Jane Spalding  

Mom says that I was born with a head too large for my body. My fontanelles were wide and late in closing. My eyes, too, looked large compared with my small nose, jaw, and chin. My upper lip seemed neglected in favor of a wide, droopy, lower lip. My smile was always a little crooked too, due to a shade of facial asymmetry. Smile I did for I was a happy child, squealing in delight at the world. 

Physical development came slowly; I remained at about the fifth percentile on the growth charts. Always thin, I had energy but not strength. Double-jointedness made me awkward. My tired eyes would cross. (You do know that DNA really stands for the National Dyslexic Association.) 

So, I spent my childhood small. That was ok. I really didn"t mind. Because I was frail and uncoordinated, I spent most of my time playing with the girls. That was just fine with me too. I was, after all, a girl. 

There was one other small problem, however. My parents thought that I should be a boy. My high-pitched voice, my small size, and my rather feminine facial features and mannerisms weren"t as important to them as my masculine-seeming genitals. Mom and the doctors were worried about those, you know. They never said anything but I could tell from the way they looked when they examined me. 

What none of us knew then was that I have both male and female cell lines. Boys are 46XY. Girls are 46XX. Turner Syndrome girls are 45X. Well, I have 45X cells and 46XY cells. I"m an XY-Turner mosaic, the type they used to call Mixed Gonadal Dysgenesis. 

Mom and dad were both very loving and understanding. They spanked me a lot, for my disobedience, for my temper, and for my selfishness. Whenever they caught me in my sister"s clothes, however, they got all sad looking and tried patiently to explain once again that I was a boy and that boys didn"t wear dresses. I sometimes wished that I could be a boy then. I envied the boys their speed, strength, and agility. But puberty would arrive soon enough. I"d get my periods. My breasts would grow. I knew I had a boy"s parts but that would change too when puberty came. They"d see that I was really a girl. Until then I"d have to be content. They let me play with dolls. Mom even taught me to cook and sew. But I had to pretend to be a boy or they"d be unhappy. 

For Turner mosaics they say that what counts is not your cell line ratios but their distribution. At 13, my voice, which had been a high-pitched squeal cracked and slid down to a softer, mellower soprano. And I grew. I"m 5"6". That"s six inches shorter than my older brother but very tall for a Turner woman. I guess I have my Y chromosomes to thank for my height. Other than that, I was rudely disappointed by my puberty. Like most Turners I didn"t develop. No menstruation. No breasts. I know. I know. Boys don"t menstruate. But remember that I"m Turners. I didn"t become a man either; I remained a feminine child. And now I had a very bad attitude about life. There were times during high school when I really didn"t care to continue with life. I did my best, however, to hide it. I had to keep my grades up and go to college. For mom and dad. What I wouldn"t have given to be completely female. I"d have settled, however, for being completely male. What I got instead were nearly perfect SAT scores and a free ticket to a college far from home. 

. 19 years. . 22 years.  

People ask me how I made it into my twenties without anyone realizing that I needed hormones. When was the last time you saw your teenager nude? I"d always been small and skinny and late developing. I simply looked several years younger than I was. At 18 I left home for college. I returned with long hair. 

At 22 I looked like an underdeveloped girl with the genitals of a 14-year-old boy. I had reached 5"6" but weighed less than 120 pounds. My arms and legs were disproportionately long from delayed epiphyseal closure. I had neither the broad shoulders of a man nor the full hips of a woman. I had no Adam"s apple, no muscle mass, no breast development, and no beard. Not even those masculine-seeming genitals had completed their journey to manhood. 

I wasn"t homosexual. I didn"t want to be effeminate or a transvestite. I didn"t understand why my heart insisted that I was female when my genitals were clearly male. And if they were male then why wasn"t the rest of me? Even with short hair people said that I looked like a girl. 

As soon as I was 21 I started looking for a doctor who would help me. The endocrinologist I found offered me testosterone injections, saying that he could "make a real stud" of me. Testosterone would effect dramatic changes in my body and my life. I would look like a man when he was done. But could I live as one? Did I want a deep voice, muscles and facial hair? 

On the other hand, he said, I"d make a pretty girl and that I was very "natural". Estrogen would help me gain weight, put some fat on my hips, and promote breast growth. Otherwise I"d remain pretty much the same. And, oh yes, there was genital surgery. Could I really develop hips and breasts? And could they really make me right down there? What would dad say? 

. 27 years .. 30 years .  

Surgery was 24 years ago now, a distant memory. The Lord has been good to me. And I"m content with the decision I made... 

Suggestions to parents

Whatever parents decide in this situation, they can have a very difficult time of it.  My personal opinion would be to win the child"s affections, teach them to love God, and attend to their health.  I would delay any surgery unless something was life-threatening. Let the physical ambiguities remain until the child can help decide their fate. Raise the child as if they were unambiguously one sex or the other but watch for signs that the choice was wrong. Explain everything as soon as the child can listen. Explain repeatedly. Get your child"s trust. Don"t get upset when they experiment. Give them every opportunity to find out who they are. They will have to choose and you must help them see that you will love them male or female. I am grateful to God for the life that I"ve had.  There are scores of people with worse problems than any I"ve had.  Yes, I think I would like to have been raised a girl, but I might have messed up worse that way. :)  I could spend my life considering "what if"s" or being bitter, but my past is what it is and I have a life to live in the present.  Reliving the past is only useful if it helps someone else survive being intersexed.

 jane_spalding  

Height: 5"6", Weight: 127 lbs, Armspan: 5"8 1/2"

SAT Math: 800, Verbal: 752, Physics AP: 800,  ACT: 32

GRE Verbal: 750, Quantitative: 780, Analytical: 700

(Just don"t ask me to navigate using a map.)

Medications

· Synthroid .1mg

· Estradiol 1mg

· Prometrium 100mg

· Lipitor 20mg

Karyotype 46,XY/45,X Turner Syndrome mosaic

Intrauterine Growth Retardation (mild)

· Birth weight 5 lbs 6 oz

· Head large for body size, late fontanelle closure

· Delayed growth, 5% on growth charts until pubertal growth spurt to 5"6"

· Triangular facies, prominent forehead, large eyes, small chin

· Overcrowded teeth, persistent baby teeth (baby teeth, 8 adult teeth extracted)

· Thin upper lip (corrected later using fascia tissue), High pitched voice

Note that most of the above symptoms diminished with age

Mild joint hyperextensibility

Mild dyslexia, lazy eye/strabismus

Post-rotated ears

Simian Crease

Childhood diseases

· Measles, Mumps, Chicken Pox, Rubeola, Rubella

· Repeated Ear infections/Swollen glands

Hypogonadism

· Peripubertial testes/ovotestes, phallus, pubic hair at age 22

· Scant axillary and facial hair, reduced musculature, small Adam"s apple

· Disproportionately long arms and legs (late epiphyseal closure)

Hypothyroid

Hyperlipidemia

Bicuspid aortic valve

Hospitalizations

1999 - Bilateral capsulectomy & latissimus dorsi breast reconstruction

1994 - Sigmoid section vaginoplasty for stricture repair

1984 - Septoplasty

1980 - Wisdom teeth extracted

1980 - Rocky Mountain Spotted Fever

1975 - Gonadectomy, vaginoplasty, mammoplasty, rhinoplasty

1971 - Appendectomy

1966 - Adult & baby premolars extracted

196x - Persistent baby teeth extracted as necessary

1959 - Fractured clavicle

1953 - Stomach pumped (swallowed a bottle of aspirins)

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