What I Thought I Knew: A Memoir

by Cohen, Alice Eve

  He is waving his right hand. There’s a distant, high-pitched voice from inside my head, a fairy’s voice. “Hello, Mommy. I’m here. I slipped under the radar. I hid from you, but now I’m here, and I’m waving at you. See me? See me, Mommy? See me waving my little hand? See my heart? My little heart beating so fast, ta-tinn, ta-tinn, ta-tinn, ta-tinn, ta-tinn? Now you see me? Ha! Ha! Ha!”

  “I’m here with Alice Cohen. . . .”

  Jim is on the phone with Dr. Riley, while Jane silently pats my hand and smiles her worried, lips-together smile. “No malignancy. No. She’s pregnant. . . . Yes, that’s what she told me. . . . She’s in her third trimester. Twenty-six weeks. . . . Yes, the fetus is moving, heart rate is good. . . . Your patient appears to be in shock. . . . You need to talk to her.”

  I wrench my brain out of believing I’m in a dream so that I can give all my attention to believing I’m in shock. That’s as much as I’m ready to believe. The radiologist hands me the receiver.

  “Congratulations, Alice, this is great news!”

  “Dr. Riley . . . I don’t want to have a baby. I can’t have a baby. Can I get an abortion?”

  “No, it’s too late for that. An abortion is not legal after twenty-four weeks. This is really very good news, Alice, but you’re in shock right now. I thought you had a tumor, I was afraid you had cancer, I really did, or I never would have sent you for a CAT scan. But you don’t have a tumor. You’re healthy. The fetus is healthy. Call me Monday and I’ll refer you to a high-risk obstetrician. Go home now. Take it easy this weekend. Drink lots of water. Oh, and stop taking the estrogen! Start taking prenatal vitamins.”

  “Do you want to know the sex of your baby?” the radiologist asks.

  “Yes. No. Please don’t tell me.”

  I know already, but I don’t want him to tell me. Knowing it’s a boy makes it worse, somehow. If I don’t hear it from the doctor, maybe I will have been mistaken and it will be a girl, or this will still be a dream.

  But I know it’s a boy. And I’ve rejected my son on the first day I met him. “I don’t want to have a baby. Can I get an abortion?” I said out loud in front of three doctors. And worse, before rejecting my son, I neglected him for six months. I starved him, and probably injured him, subjected him to drugs and CAT scans, purple dye, Italian red wine and caffeine and X-rays. And now I don’t want him. What kind of a mother am I? A monster.

  “Take the sonogram image home with you. Your first baby picture.”

  It was night when I left the hospital. With a picture of my unborn son hidden in my pocket, I cabbed to Sue’s and assured her I was okay but that I had to talk to Michael before I could tell her the results of the CAT scan. Julia and Adria sat to my left, Julia eating Sue’s elegant meal of veal stew and wild rice in her characteristically messy style, Adria with precociously grown-up manners. Julia, happy to be out late with her friend, didn’t notice that I was too distracted to carry on a coherent conversation, that I couldn’t eat a bite of dinner, that I kept grabbing her hand under the table, like a child afraid of the dark.

  Michael got home at 1:00 a.m. “I’m exhausted. Can’t this wait till morning?”

  “No.”

  He put his suitcase down and sat on the sofa with me.

  “I’m six months pregnant.”

  He looked at me funny, checking to see if I was making a joke. I handed him the sonogram picture. He studied the grainy image, taking a moment before identifying the profile, the nose, the parted lips, the feet and hands. He burst into tears. He was crying from happiness. I started crying. With Michael home, holding each other and crying, I think I was happy. That’s what it was that night. Happiness.

  Friday, terrifying and surreal, is over. I don’t have cancer. Michael is with me. We’re getting married. We’re going to have a baby. Julia will have a little brother. We’re a family. My son waved at me, his heart is beating, he has ten fingers and ten toes. To life! L’chaim! A sweet New Year!

  ACT II

  What I Know

  Scene 1

  Days of Awe

  Rosh Hashanah. Saturday, September 11, 1999.

  This is what I know:1. I’m six months pregnant.

  2. It’s a boy.

  3. It’s too late for an abortion.

  4. I’m not in menopause.

  5. My cervix is likely to dilate at any time.

  6. My uterus is small and deformed.

  7. I can’t carry a baby past six months.

  8. A baby born at six months will probably die. If it survives it’s likely to be severely disabled.

  9. In six months of pregnancy, I’ve had no prenatal care, no weight gain, X-rays, CAT scans, lots of meds, lots of Italian red wine.

  10. I took synthetic hormones every day of the pregnancy.

  11. Synthetic estrogen causes birth defects. It caused my birth defects from DES.

  12. Exhaustion, nausea, anemia, frequent need to urinate, sore breasts, sore hip joints, and reflux are all symptoms of pregnancy.

  13. I didn’t need to take estrogen.

  14. I took prescription pregnant horse estrogen for fourteen years.

  15. I was never infertile.

  16. A home pregnancy test is only accurate in the first trimester.

  17. Dylan was right when he told me in March that I was pregnant.

  The Jewish High Holidays are called the Days of Awe. On the eve of Rosh Hashanah, God opens the Book of Life and inscribes the fate of every human being in it—who shall live and who shall die, who shall be healthy and who sick, who shall be happy or unhappy—but God’s judgment is not finalized until the book is closed ten days later, on Yom Kippur, the day of fasting and atonement. “On Rosh Hashanah it is written, on Yom Kippur it is sealed.”

  I did not take Julia to the Rosh Hashanah children’s service, as I’d planned. I had to find an obstetrician. Pregnancy trumped synagogue. Michael and I told a few people about my pregnancy: Julia. My sisters, Madeline and Jennifer. Michael’s sister, Christie, and his mother, Daisy. My dad. Sue.

  “Julia, sit down. We have exciting news,” we told her on Saturday morning.

  “What?”

  “I’m going to have a baby.”

  Julia’s eyes opened wide and her jaw dropped, like in the cartoons. “Really?”

  “Really. In three months.”

  “Excuse me while I drop dead for a minute. Bleh!” She flopped over on the couch.

  Michael and I laughed. Julia bounced back up.

  “Could you tell me that again?”

  “I’m going to have a baby in three months.”

  “Excuse me while I drop dead again. Bleh!” She flopped over again on the couch, bounced up again.

  “Wait a minute. Didn’t you tell me that a long time ago your doctor said that you could never have a baby, and that’s why you adopted me?”

  “The doctor made a mistake.”

  “Excuse me while I drop dead again. Bleh! . . . Wait a minute. Does that mean that this baby will be yours and Michael’s baby? Will I be the sister? Or will I be the half sister? Or the stepsister? Wait a minute, what does that make me?”

  Julia had for several years begged me for a baby sister or brother, but recently had dropped that request and appreciated her rock-solid status as a single child hugely outnumbered by parents and grandparents—me, Brad, Michael, her off-site birth parents (not an active presence, but part of her backstory), and Julia’s gaggle of grandparents—my dad, Brad’s parents, Michael’s parents. It was now dawning on her that she might not be permanently assured her position as the center of our collective universe.

  Untouchable

  A pregnant woman with no prenatal care for twenty-six weeks is a lousy insurance risk. She might be a drug addict, an alcoholic, an illegal alien, a criminal, a teenager, crazy, deluded, HIV positive, uninsured, or—worst of all—litigious! To an obstetrician, she represents an expensive malpractice liability and higher insurance premiums. A forty-four-year-old pregnant woman in her third trimest
er, with a deformed uterus and no prenatal care can be, for an obstetrician, professional suicide.

  No high-risk obstetrician would see me. I was an Untouchable. Sue recommended Dr. Carrie Rosenbloom, a celebrated high-risk ob-gyn who recently delivered twins for Sue’s friend Erica. Rosenbloom spoke to me on the phone. It was against her policy to take on a new patient so far into a pregnancy.

  My insurance plan, I discovered, sucked. I had Oxford’s Liberty Plan (bad), not their Freedom Plan (not-so-bad). Liberty was the only Oxford policy that freelancers could buy. Doctors despised it because they were paid so little and so late.

  “I called all the high-risk obstetricians I know,” said Dr. Riley on Monday, “but no one will see you this far into the pregnancy. Ask your insurance company for a referral. I’m afraid there’s nothing else I can do for you. It’s outrageous that your gynecologist did an internal exam when you were five months pregnant. Just unbelievable! Have you spoken to her? I think you should call her. It’s an outrage.”

  “Robin, I was five months pregnant when you examined me.”

  “You weren’t five months pregnant!”

  “You did an internal exam on me six weeks ago. And I just found out Friday—through an emergency CAT scan—that I’m six-and-a-half-months pregnant.”

  “Oh . . . Alice . . . I’m so sorry.”

  “I’d like a referral for a high-risk obstetrician,” I said to the Oxford telephone agent.

  “What is the nature of the risk?”

  “There are several. I’m forty-four years old, I’m six months pregnant, and I’ve had no prenatal care.”

  “What is the pregnancy risk?”

  “Um . . . advanced maternal age?”

  “Just a moment, please. . . . That’s not a risk factor.”

  “Yes, it is.”

  “There’s no code number for it, so it’s not considered a risk factor.”

  “That’s ridiculous!”

  “We don’t have an age policy regarding high-risk ob-gyn treatment. You said there were other risk factors?”

  “OK. I’m a DES daughter—Di-ethyl-stilbestrol. Because of my DES exposure in utero, my cervix is likely to dilate early, resulting in premature delivery.”

  “Just a moment, please. . . . There’s no code number for DES.”

  “There’s no code for DES, because DES daughters are too old to have babies!”

  “Are there any other risk factors, Ms. Cohen?”

  “Yes. I have a deformed uterus. That has to be on your list. A small, deformed, two-horned, bicornuate uterus.”

  “Could you spell that?”

  “B-i-c-o-r-n-u-a-t-e.”

  “Just a moment, please. . . . There’s no code for that.”

  “Please listen for a minute. I’m forty-four years old; I’ve had no prenatal care for six months; I’ve been given hormones that are dangerous for the fetus every day of the pregnancy; my cervix is likely to dilate early; I have a deformed uterus; and I’ve been told I can’t carry a baby past six months, which was two weeks ago.”

  “According to our codes, none of these qualify you for high-risk obstetric care. Is there anything else I can help you with today, Ms. Cohen?”

  My sister Madeline came to the rescue with a referral for her friend’s high-risk ob-gyn. Dr. Slotkin agreed to see me, though he didn’t accept Oxford, so I’d have to pay out-of-pocket.

  “Yes, I’m very familiar with DES daughters. If I’d seen you earlier in your pregnancy, I would have put a stitch in your cervix to keep it from dilating, but it’s too late for that. If I put a stitch in now, it would probably cause your cervix to dilate, and that’s exactly what we don’t want. I’d like you to take it easy, Alice, really limit your physical activity.”

  “Can we do an amnio?”

  “Well . . . since it’s too late for an abortion, amniocentesis is pointless, and there is a slight risk involved in the procedure. However, if there is a serious genetic defect—amnio only tests for a few genetic disorders: Down syndrome, cystic fibrosis, the big ones—it might be legal to have a late-term abortion.”

  I shocked myself by wishing for a serious genetic defect so that I could have an abortion and get on with my life. “I want to do amnio right away.”

  He hesitated, then told me a story. “My big brother has Down syndrome. My parents’ lives were turned upside down by the relentless demands of raising Howard. He lives in a state institution now. I don’t know if he’s ever been happy, it’s so hard to tell. . . . Given your advanced maternal age, Alice, you’re at greatly increased risk of genetic defect. I understand why you want amnio, and why you would choose an abortion. I won’t judge you, if this is how it plays out. But let’s hope the baby is healthy.”

  It pinched when the doctor drew amniotic fluid from me. On the ultrasound screen I watched the sonographer enter measurements of the baby’s limbs and head. He cheerfully pointed out the baby’s penis on the screen, and produced an estimated due date.

  Two days later Dr. Slotkin called with the test results.

  “The fetus is genetically female but anatomically male.”

  “I don’t understand.”

  “She has a double X chromosome and male anatomy.”

  “. . . She’s a girl with a penis?”

  “Yes.”

  “Why? Why does . . . why does she have a penis?”

  “I don’t know. It’s very unusual.”

  The shock of carrying a girl with a penis tricked me momentarily into thinking I was hearing difficult news about an ordinary pregnancy. Then I remembered how bizarre every aspect of this pregnancy was.

  “Does this make it legal to get a late-term abortion?”

  “No. It’s not necessarily a health concern, so it doesn’t meet the state requirements for late-term abortion. I would like you to see Dr. Katzen, a pediatric urologist surgeon who has experience with ambiguous genitalia.”

  The Surgeon

  Dr. Katzen proudly turned the pages of his portfolio. “Here are twins Jerome and Joshua.”

  Photo of two baby boys, as macho as two infants in blue onesies can be.

  “Turn the page. Jerome and Joshua are now . . . Jessica and Janice!”

  In this photo, the babies are now in pink dresses, looking très femme.

  Dr. Katzen looked across his desk to make sure Michael and I were suitably impressed. We nodded, speechless. Sketching on pink Post-it notes, he enthusiastically showed us how he could create a sexual metamorphosis with a scalpel and needle. He was a veritable Michelangelo of the pediatric operating table, a baby’s genitals his virgin slab of marble. He could cosmetically sculpt our baby’s two-inch penis into a compact little clitoris.

  “Won’t she lose sexual sensation?” I asked, my voice suddenly hoarse, a shudder running the length of my body. I grabbed Michael’s hand, which was cold and shaky. He didn’t want to be here. He was here because I’d asked him to come. “Can’t we just wait till our baby is born and see what happens?” he’d said, but I didn’t think I could handle any more surprises.

  On a blue Post-it, the surgeon drew a picture of the long nerve that runs the length of a penis. Then on a pink Post-it he drew that same two-and-a-half-inch nerve, neatly folded multiple times, to fit in her new, improved, half-inch clitoris. “By preserving the nerve, we are able to preserve sexual sensation and optimize adult sexual function.”

  “Wow, wow, wow!” I said, shuddering again, imagining how it must feel to have the nerve that transmits sexual sensation folded up and sewn into a teeny satchel, and I shuddered again when I imagined the doctor sneezing and missing just when he was adding the final trim.

  Dr. Katzen sketched some more, on gender-neutral yellow Post-its, to show us how he could create a functional vagina in our baby, should hers be missing.

  “Wow!” What else could I say to the surgeon who promised he could turn my baby’s penis into a clitoris, and fabricate a vagina into my vagina-less little girl.

  “Have you done many of these sur
geries?” I ask.

  “No. Just a few. As many as any surgeon has. Genital ambiguity is extremely rare.”

  “Is surgery always recommended?” Michael asked.

  “The American Medical Association recommends corrective surgery for children with ambiguous genitalia.” Katzen’s face darkened. “However, the transgender activists are against it. They abhor the term normalcy. They say surgery robs them of their unique gender identity and diminishes sexual sensation. They think every child with ambiguous genitals should have the privilege of saying, ‘It’s my body, it’s not like anybody else’s body, and I like it the way it is.’ Which is total bullshit! How is a twelve-year-old boy without a penis going to feel when the other boys taunt him in the locker room? How will a teenage girl with a penis feel when her boyfriend rejects her in disgust? It’s cruel to subject boys and girls to that kind of humiliation!”

  He cleared his throat and settled back in his chair. “I urge you to consider surgical correction.”

  Michael and I took his sketches home with us.

  We’ve known for less than a week that we’re having a baby in three months. Now we have to face the ethical dilemma of whether to surgically correct her penis. Katzen’s solution sounds at least as dogmatic as that of the transgender activists, and terrifyingly irreversible. In the meantime, the gender ambiguity made choosing a name . . . complicated.

  Salt-Wasting

  Genital ambiguity has few known causes. Exposure to excessive hormones in utero, such as the synthetic estrogen I was taking for the first six months of pregnancy, can cause birth defects, including genital deformity. It can also be caused by CAH (Congenital Adrenal Hyperplasia), a rare, salt-wasting genetic disease, fatal if not treated daily. Genital ambiguity is the only outward physical sign of CAH.