“I can’t do it,” I sobbed.
“Alice, honey, we can figure it out, it’s going to be okay.”
“No it’s not, it’s too much. Maybe we should call the adoption agency.”
“Let’s talk about this at home.”
“Don’t worry, Alice,” purred Dr. Christopoulos. “All she needs is love. It will be fine.”
I broke down into loud, stupid tears in Dr. Arbogast’s office.
“Mrs. Cohen, what on earth is the matter with you? Stop crying. I think your wife is DEPRESSED!”
“Yeah.”
“This is not satisfactory. Depression is very BAD for this baby. Melina, this mother has the worst case of postpartum depression I have ever seen. Don’t you think so?”
“Yes, I agree with you, Abigail, she seems to be very depressed.”
“Listen up, Mrs. Cohen, I am writing a memo to your gynecologist right now . . . ‘Mrs. Cohen has the WORST case of POSTPARTUM DEPRESSION I have ever seen. She MUST see a PSYCHIATRIST who specializes in postpartum. RIGHT AWAY, before she does damage to herself or her baby. Please make psychiatric REFERRAL for Mrs. Cohen. My recommendation would be Dr. Bellucci, who specializes in POSTPARTUM depression. Yours truly, Abigail Arbogast.’ ‘Call the adoption agency’—that’s the most ridiculous thing I ever heard. Never heard a mother say a thing like that before. Did you ever hear a mother say a thing like that, Melina?”
“No, Abigail, I did not.”
“Dad, make sure your wife sees a psychiatrist right away. And come back in a month. I want to monitor this baby very, very carefully. You’ll bring her back next month. You are very, very lucky that I am seeing Elayna from such a young age.”
Dr. Levin referred us to a geneticist, who confirmed the diagnosis of Russell-Silver syndrome. “RSS is a rare growth disorder, with genetic causes that are complex and not well understood. In Eliana’s case, Alice’s advanced maternal age may have played a part, but it’s impossible to determine.”
We brought Eliana to the pediatric orthopedic surgeon whom Levin praised as “the best in the field, as well as the nicest guy you’d ever hope to meet.” Dr. Melody’s patients looked nothing like the children in Levin’s waiting room, whom I’d envied for their perfect symmetry. The crowded hospital clinic waiting room looked like a war zone, strewn with miniature, injured soldiers; babies whose spines and faces were contorted in pain; a big kid sitting immobile in an electric wheelchair fitted with a back brace and oxygen tank; children missing limbs, or with limbs so mismatched it seemed impossible that they belonged to the same body; a toddler whose enormous head was too heavy for her neck to support unassisted. Michael and I looked up at the same time to see a family wheel in a child who was so grotesquely deformed she or he did not look quite human. More a Frankenstein-like assemblage of mismatched parts, ripped apart and crudely resewn, features splattered onto its face in angry disorder. Boy? Girl? Age? It was impossible to tell. The child’s toddler sister played quietly on the floor beside the wheelchair with two Barbie dolls. The parents looked tired. It was difficult not to stare.
So we looked at Eliana, who was peacefully lying in my lap, playing with Michael’s fingers. We looked at her perfect rosebud lips. Rosy cheeks. Alert and sparkling blue green eyes. Soft, glowing skin. She kicked her legs. She grabbed Michael’s hand and sucked on his finger. She made eager baby sounds.
She looked beautiful and complete and content.
“She’s a good candidate for leg-lengthening surgery,” said Dr. Melody, gently holding Eliana, making eye contact with her as he bent her knees and circled her legs to test her flexibility. “If Eliana’s leg-length discrepancy remains proportional to her overall size, at full height her right leg will be about five inches shorter than her left leg. In early childhood, a shoe lift will suffice, but I predict that she’ll need at least two lengthening surgeries, one on the tibia and one on the femur.”
“How do you lengthen a leg?” asked Michael.
“Luckily, bone grows. Broken bones regenerate. So we cut the bone in half . . .”
Michael looked as if he might faint. I squeezed his cold, damp hand with my cold, damp hand.
“. . . and we stabilize the leg with an external frame. Then we literally turn a screw every day for about two months, to separate and lengthen the severed bone—it’s called ‘bone distraction.’ Each day a tiny amount of new bone fills in the gap.”
“Does it hurt?” I asked.
“Yes, it does. It’s not just the bone that has to lengthen. We’re stretching the soft tissue and muscles and ligaments and nerves, which can be quite painful. Sometimes we have to do additional surgeries to cut and lengthen the soft tissue. It takes up to a year to fully recuperate.”
Now I feel like fainting.
“But kids are pretty resilient. I expect that Eliana will spend two years of her childhood going through this. It’s no fun, but without leg-lengthening, she’ll probably have chronic back pain as an adult, and wearing a five-inch shoe lift is not a good thing. Let’s wait and see. There may be some catch-up growth in the right leg as she gets older.
“Bring Eliana back in six months. I want to keep a close watch on her scoliosis. Perhaps her physical therapist can straighten this C-curve. Otherwise, we might consider back surgery.”
Wrongful Life
“You have a strong case. I’ll take it on,” said Joan Miller, the medical malpractice lawyer I’d spoken to during my pregnancy. “I’m personally interested in pushing the envelope on these cases if I possibly can. But, Alice, are you up to this? It’s hell going through a lawsuit, I guarantee you. You’ll have to say things under oath that Eliana might ultimately have access to, so you have to think about that too. And I’m no picnic for my clients, you should know that. I’m going to be very, very tough on you; you’re going to have to work very hard on this case. And it could take three years for the case to go to trial. Do you have any questions?”
“Is it a problem that we can’t prove Russell-Silver syndrome was caused by the medical malpractice?”
“Not at all. You just have to prove that there was malpractice—a no-brainer in this case, since your gynecologist was a moron! A total fucking moron! Pardon my French. I can’t believe she did an internal exam when you were five months pregnant and told you—what? That you had a bladder problem? Loss of muscle tone? She shouldn’t be allowed to practice medicine.
“You have what’s called a ‘wrongful life’ case. Are you familiar with the term?”
“No.”
“ ‘Wrongful life’ refers to a class of legal cases in which the birth itself is a result of the malpractice. That’s what you’re saying—isn’t it? That you wouldn’t have had this baby if it weren’t for your doctors’ mistakes? Wrongful life is controversial, because it implies that a child shouldn’t have been born. Ultimately, it’s predicated on a prochoice position. It gets into ethical gray areas. It’s political. Juries and judges don’t want to go on record saying that a particular child should not have been born. Most lawyers quite frankly don’t like to touch ‘wrongful life’ cases with a ten-foot pole.”
“You’re very, very limited in what you can sue for. Damages are limited to the additional and extraordinary expenses of raising a child with special needs. You can’t sue for the ordinary expenses of childrearing, and you can’t sue for emotional injury. The legal precedent is very clear. If the child is healthy, even if the birth was a result of unmistakable medical malpractice, you can’t sue. Period. You only have a case if the baby has a sickness or disability, which will result in expenses over and above the cost of raising a healthy child. If you, the mother, suffered emotional injury as a result of the medical malpractice, you can’t sue for that. If your child suffers emotional injury as a result of the medical malpractice, you can’t sue for that. Even if the mother is impoverished, you can’t sue for the cost of food and shelter for an unexpected, unbidden child.
“Bottom line, the court presumes that having a child is a good thing
, that life is a good thing. The legal precedent in ‘wrongful life’ cases is very clear, but I want to push the envelope. I’m an extremely aggressive prosecutor. This is a feminist issue, and I’d like to take this on. There’s no financial risk for you. In med-mal cases, the client pays nothing unless the case is won or settled in your favor, in which case the lawyer gets thirty percent and the client gets seventy percent. Let me know what you decide.”
Michael wants nothing, nothing, absolutely nothing to do with the case. He doesn’t believe in the premise of “wrongful life.”
“Go ahead, Alice, have your lawsuit. Good luck. I hope you win a lot of money. I hope you and Eliana don’t get hurt in the process. Just don’t talk to me about it. I’m not part of this lawsuit, so keep my name out of it. I wish we could just get on with our lives as a family instead of dwelling on what’s over, on what might have been.”
“We’re going into debt, Michael. We can’t afford to pay for our crappy insurance, much less the doctors Eliana sees every week.”
“We’re not a family with one ‘wrongful life.’ ”
“Growth hormone costs $15,000 a year. Who knows what the surgeries will cost?”
“We’re not four people, three of whom were meant to be born and one who wasn’t.”
“If I win this case, her surgeries and doctors’ visits and medication and who knows what else will be paid for. Do the math, Michael. I have to do this for Eliana.”
“I don’t want anything to do with this lawsuit.”
We are, meanwhile, paying the minimum fees on our mounting credit card bills. I’m editing Play by Play, but I can’t tour, so my income is minimal. Michael is touring—school shows in upstate New York, corporate performances in Chicago for Arthur Andersen. He’s flying around the country. We’re both taking on as much work as we can.
I hire a babysitter so I can get my work done. Jasmine the babysitter charges a lot because she has to pay a babysitter to take care of her daughter in Brooklyn while she’s babysitting Eliana in Manhattan. Eliana is expensive. We go deeper into debt.
I sign a contract with Joan Miller and sign dozens of release forms so that she can gather evidence. My lawsuit on Eliana’s behalf gives me a sense of maternal purpose. I’m getting really good at the advocacy part of parenting: like finding a doctor for Eliana when every doctor has said no; like taping tubes to my nipples so Eliana will be fortified by my meager allotment of breast milk; like suing for medical malpractice.
My mother the sociology professor taught me, “The way to change people’s attitudes is to first change their behavior. Their attitudes will follow.” I trust my mother’s faith in this tenet of social science. If I can just master the behavior, make a habit of maternal self-sacrifice, the rest—
The rest? I can’t remember what “the rest” is, just that there’s something missing. What is it? I close my eyes and search for that thing I used to have. It glimmers briefly and eludes recognition. What am I looking for? A brilliance of light and color? An effortless sense of connection? An illogical perception of delight? Ecstatic yearning? A dimension of emotional texture and depth that I once took for granted but is now hidden, and if I could just remember what I’m looking for, I could remember where it’s hidden? As a little kid, I used to think, “When I’m a mommy, I will do X and I won’t do Y,” keeping an inventory in my head of the things I would do just like my mother did, and the things I’d do differently when I had children, and now that I’m a mother who’s forgotten how to be one, I wish I could remember the maternal manifesto I believed so adamantly when I was six, I could really use it, but the X and Y details are lost, so I’ll grab hold of whatever I can grab hold of, which is “If I can just master the behavior, make a habit of maternal self-sacrifice—”
—the rest (I hope) will follow.
Decisions
“You are severely depressed,” says Dr. Bellucci, the psychiatrist Dr. Arbogast insisted I see. She specializes in postpartum depression and other disorders related to childbirth. “I’m going to prescribe an antidepressant.”
“No. Antidepressants are absorbed by breast milk. I exposed Eliana to enough chemicals before she was born. I don’t want to inflict on her the unknown secondary effects of the serotonin reuptake inhibitor you want me to take.”
“Would you consider stopping nursing and getting treatment for your depression so that you can bond properly with Eliana?”
“I’m nursing her till she’s six months old.”
“You told me she’s not getting much breast milk.”
“She’s getting some. And I feel very bonded to her. I didn’t for a while, but this is who I am now. I’ve given up everything else for her.”
“You also told me you fantasize about throwing yourself in front of a moving truck, which I’m sure you agree would be very harmful to Eliana.”
“I’m not really going to kill myself, I just imagine it. And it’s usually not when I’m with Eliana. It’s only when I’m alone that I get hit with these ninety-five-mile-an-hour hardball pitches into my brain, with these terrible, suicidal fantasies.”
“I can prescribe meds proven to have the lowest absorption rate by breast milk. You can take it just before Eliana goes to sleep so it will be out of the breast milk before you nurse her. Here, you can read the studies.”
I tried two different antidepressants.
Zoloft made me feel temporarily psychotic. In the middle of a sleepless night, my mind raced, and I was overwhelmed with waking nightmares. Paxil had the opposite effect. It took two weeks for anything to happen. Then I was slightly sedated, physically relaxed if a bit groggy. The suicidal thoughts ended.
“It takes the edge off your depression, doesn’t it?” asked Dr. Bellucci.
Can you take the edge off something with no edge? Depression has an amorphous shape, no edges or corners, an all-encompassing cloud. My depression itself, the debilitating sense of hopelessness, was a dulling experience. At its worst the dullness made me feel poisoned. Paxil filtered out the poison. I was able to sleep through the night. “Yes, it takes the edge off.”
Smiling
Eliana started smiling.
So did I.
It’s heaven when your baby smiles at you. It causes mothers and fathers to fall in love, over and over, every time she smiles.
She started to read at six weeks.
Okay, that’s the inflated claim of a doting mother. She wasn’t reading, but she was fascinated by books. And I swear, when she was six weeks old I read Goodnight Moon to her, and when I said, “Turn the page, Eliana,” she jerked her tiny hand to the cardboard page and pushed it to the left. Every page!
At the end of January, I got my period, the only time in fifteen years I’d had a period while not on ERT.
“Good lord, Alice, you certainly are not low-estrogen anymore, if you ever were,” said Barbara, now my regular gynecologist. “Very few women get their periods so soon after giving birth. Your reproductive system is on go, that’s for sure. You’ll definitely have to use birth control if you don’t want to get pregnant again.”
Scene 4
Home Remedies
Eliana’s Early Intervention home services begin in February.
Cathy, the physical therapist, comes to our apartment three mornings a week. She asks me to be in the room with them for the whole hour. She could use the extra set of hands. I hold Eliana’s ankles while Cathy stretches her over a therapy ball to straighten her C-curve. It hurts her to be stretched like this and she cries every time, which makes me cry. But Cathy is an inspiring coach. She talks Eliana through the process, encouraging her all the while she is crying. Then, as soon as each stretching session is over, Cathy holds her, and Eliana is all smiles and hugs. Despite the pain she associates with Cathy’s visits, the moment Cathy shows up at the apartment Eliana smiles and squeals with excitement.
Cathy improvises like an artist. She used to be a dancer, and she’s translated her creative passions into her Early Intervention work.
She scopes out the apartment for props, turns a pillow, a teddy bear, and a cereal box into an obstacle course.
Sometimes Cathy shows up with her two-year-old son, Todd—“Hope you don’t mind. This is totally against Early Intervention rules, but my babysitter didn’t show”—and the session turns into a work session cum play date, toddler and infant equally curious about each other. Cathy assigns Todd jobs that make him feel important, like shaking bells and rattles to cheer Eliana up after she’s been stretched.
One day Eliana and I show off to Cathy how she’s learning to hold my hands to pull herself up to standing, and Cathy goes ballistic. “Don’t you dare let her walk before she crawls,” she admonishes me, as if I’d let Eliana put her hand in fire, “or her proprioceptive responses will never develop properly!”
“Her what?”
“Proprioceptive senses are sensory nerve terminals in the muscles, tendons, and joints that keep track of your body position and movement. Proprioception tells the brain about the position of your body parts in relation to one another, and the position of your body in relation to the world.”
“Why is crawling important?”
“The infant develops proprioceptive responses through her knees and her toes and her hands when she crawls. It has to happen in infancy, or forget about it. Caput. Window of opportunity closed. Hey, Eliana, ya hear what I told your mom? Don’t think you can wheedle out of crawling, just ’cause you’re cute. It doesn’t have to be pretty, but you have to get around on all fours before you walk. Capeesh?
What I Thought I Knew: A Memoir Page 12
