What I Thought I Knew: A Memoir (16 page)

When Eliana was four weeks old, Dr. Melina Christopoulos, the miniskirted endocrinologist, called us.

“I’d like you to come in and meet my colleague Dr. Abigail Arbogast. When I examined Eliana on day she was born, I noticed that she had some unusual features I think Dr. Arbogast would be interested in seeing. I will make point of being there. It will be nice to see you.”

Dr. Arbogast left us in the waiting room for three hours, so we were feeling somewhat defensive going in, even though Dr. Christopoulos visited us periodically, wearing a red leather miniskirt and matching thigh-high boots.

“This baby has all of the CLASSIC Russell-Silver syndrome features. Lookit that! Doctor Christopoulos, do ya see those curved PINKY FINGERS! Lookit the small EARS, wouldja lookit that pointy CHIN. . . .”

Dr. Arbogast wore cowboy boots, a denim skirt, and a string tie with a turquoise pendant over her denim shirt. Her Texas accent completed the middle-aged cowgirl effect.

“And look at this leg length DISCREPANCY. That is the most EXTREME ASYMMETRY I have ever, ever seen on a Russell-Silver child. Usually you don’t notice the asymmetry till they’re older. Wouldja look at this baby lyin’ on her back, she is shaped like a
C
, a classic C-curve as a result of her asymmetry. This is quite remarkable. Yes! Unmistakable!

“Mom, Dad, your baby, Elayna, has Russell-Silver SYNDROME.”

“So we gathered,” said Michael.

“I am very pleased that you brought her to me. I am an expert on Russell-Silver syndrome. I have patients with Russell-Silver syndrome who come to see me from around the world. The little girl who you passed when you were walking in, she and her family fly in to see me from Michigan several times a year. You’re gonna bring Elayna to see me every month. Do you realize, Mom and Dad, how lucky you are to have little Elayna—”

“It’s Eliana,” Michael corrected her.

“Do you know how lucky you are that Elayna has been diagnosed at such a young age? There are some RSS children who are not diagnosed till they’re seven or eight months old, and by then a great deal of damage has already been done.”

“What kind of damage?” asked Michael.

Dr. Arbogast answered Michael’s question with relish. She relished everything about Russell-Silver syndrome, every gosh darn little bit of it.

“These children have digestive difficulties, you see. They are unable to eat, utterly UNABLE, because they have such severe REFLUX that they develop EATING AVERSIONS. And you see, these Russell-Silver children would rather STARVE to death than take nourishment. For many of my patients, the only way to nourish them is through a FEEDING TUBE, so we operate on them as babies or as toddlers, and if they won’t eat by day, we put that food into their BELLIES at night through a FEEDING TUBE. Which is why I am so PLEASED that Dr. Melina Christopoulos here identified ELAYNA at birth, so that we can try to AVOID having to use the feeding TUBE. Dad, what is the matter with your wife?”

“She’s having a hard time taking this all in,” he said—an understatement, as I was on the verge of falling apart.

“What’s so hard to take in, Mom? You’ve raised a child before. This is no different. You just raise this baby the way you would raise any other baby, just that she’s got a DWARFING syndrome, and we’ll be giving her growth HORMONES to make her grow, and I think, because her leg length discrepancy is so EXTREME, you’ll probably be looking at some leg-lengthening SURGERIES throughout her childhood, which could mean a lot of time in and out of WHEELCHAIRS, but it’s worth it, as long as there’s no NEUROLOGICAL DAMAGE. And then a lot of these children have LEARNING DISORDERS, nobody knows why but they do, so they tend to go to special schools, and one of my RSS patients is autistic. Dad, what is the matter with your wife?”

“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.”

“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?”