12. La bataille s’est engagé
When it was all over, we went to see Schultheis.
The truth is, we still didn’t really understand what had happened to Eva. Was it just typical birth trauma, oxygen deprivation? Was it a twisted umbilical cord, causing weight loss as well? Was there something else? Something that might happen again? Or was it just one of those freak things, a lightning strike of shitty luck, but one that didn’t increase our risk in the future? We tried to ask the doctors in the NICU; we asked Dr. Rao; we asked Inez. Everybody would look at us for a moment and then say, “You should talk to Dr. Schultheis.”
There was something weird about the way they said it.
We made an appointment to go see Dr. Schultheis.
It was hard, driving down the streets that led to the hospital; stopping at the lights we had stopped at; turning at the intersections where we had turned. Hearing the badda-bump as we went over the traffic control spikes at the entrance to the parking garage. It was hard going back into the hospital; the concrete, the black glass, the whoosh of the automatic glass doors, the weird airless interior light. The low hum of air conditioning and unseen machines, the beeping of elevators and paging systems, the flapping of gray double doors with little glass windows criss-crossed with wire. When we walked down the corridor past the NICU and I saw the plastic isolettes full of babies, my heart pounded. I could smell the pink chemi-floral disinfectant soap from the dispenser at the door of the unit.
Dr. Schultheis sat behind a huge desk in his darkened office as we were ushered in by an assistant. The blinds were half drawn, the ceiling lights off; he had a yellowish lamp on a credenza, another on his desk. His office had a kind of “Mr. Big” look to it that I didn’t fully expect for a hospital doctor. Was it really such a huge desk? Was it really so dark? Or do I just remember it that way?
Schultheis looked at us through rimless glasses, pale eyes narrowed to slits, bald head pale and foetal in the dark room. Okay, I’m making him sound like a cross between a 1950’s movie Nazi and Voldemort. Did he really look like a cross between a 1950’s movie Nazi and Voldemort? Or is that just how I remember him? In any case, I don’t mean to imply that these physical features were somehow an indication of his character.
But he did look like that.
Schultheis stood and reached out to shake our hands as we approached. His fingers were soft and pinkish, like a litter of baby mice.
Two leather chairs sat facing his desk. We sat down in front of him.
Dr. Schultheis folded his hands on his desk and looked at this couple who had caused something of a stir in his unit. He had built this NICU up over the last twenty-five years from almost nothing, from a small room with a half-dozen incubators to one of the premiere advanced neonatal intensive care and research facilities in the country. They saved babies. They saved lives. They helped underprivileged women with premature babies, they were doing invaluable research on the effects of crack cocaine on neonates. They were the best in the world! And of course, to be serious about this — this was the real world, after all, not the warm-and-fuzzy fantasy world, and to do the greatest good somebody has to be willing to think about things realistically –– neonatal intensive care was a profit center for the hospital. What the unit brought in helped the whole organization. They provided cutting-edge treatments to at-risk neonates, and cutting edge treatments cost money, and insurance companies could be made to pay that money. Their work was invaluable, indispensable.
These people had come in and asked questions. They had convinced the staff to let them set up a bed in a storage room so they could hold their baby. That didn’t look good. It was weird. They had taken their baby home to die. Nobody did that. Yet Schultheis had been very tolerant about all of it, very supportive, even when it gave him misgivings, even when it seemed to imply a criticism of the standard practices of his unit. This was LA, after all. You had to accommodate some weird ones sometimes. There was that actress who wanted to bring in a trance channeller to connect with her baby’s previous incarnations. He considered himself skilled at handling those situations; he always tried to be diplomatic, to keep everybody happy; to avoid problems.
Now they were here with more questions.
Why do doctors and scientists lie? Well, a lot of reasons. In one study, 33% of medical researchers admitted to some degree of involvement in research misconduct. That’s the ones who admitted it. If you ask their colleagues, the rates go up to 72%, with 14% involved in outright falsification of data. The lying begins in school; grades, success, awards, honors, admission to prestigious programs; all these things, of course, can feel more compelling, in the heat of the moment, than mere facts. A study of 508 medical students found that over 78% admitted to engaging in some form of cheating. And then once degrees are granted, careers must be launched, publications and citations must be tallied, funding must be secured, grants must be won, wealthy donors and corporate sponsors must be courted and appeased, publicity must be attracted. Cutting edge neonatal intensive care facilities must be paid for, and improved, and expanded, and promoted and publicized and improved and expanded and paid for again.
Then of course, there was liability. The world was fucking crawling with lawyers, they were like head lice, everywhere, everywhere.
Schultheis hadn’t even wanted to be in the clinical side of medical care; he had wanted to do research. He had been happiest in the lab, where everything was calm, clean, quiet; bright lights, shelves with rows and rows of clear polypropylene tubs with wire lids, in each tub a clean white rat, Wistar strain. In the lab they could perform their interventions in a controlled consistent way, measure the responses, record the data, return the rats to their assigned enclosures, everything very clear. He didn’t even like it when somebody introduced the Long Evans strain of rats into the lab, with their patchy black and white fur, each one different, like a map of a different country. It confused things.
Something he hadn’t anticipated when choosing to enter medical school was how much he would dislike touching people’s bodies; all sorts of bodies, men with their hairy skin, women with wrinkled, fat, loose skin, skin with pores and creases and moles and pustules. But skin, repellant as it was, was not as disgusting as what lay beneath. After the cadaver dissection class he began to see all patients, nakedly waiting in their thin awkward medical gowns, as repellant bags of bones and veins and organs. He had a dream where he opened a patient’s gown to find the skin also split open and pinned back, organs lying wet and dank exposed beneath, nerves and veins torn loose and tangled like hair.
Children, of course, were even more alarming, with their wild cries of terror and outrage, their flowing tears and snot. He would find himself so upset in the presence of a crying child that he couldn’t hear anything but the pounding of his own heart.
When he had first walked into a neonatal intensive care unit, he immediately felt calm. The babies were quiet, tethered to monitors and catheters and IV’s; there was no sound but the low hum and beeping of machinery. The rows of clear plastic isolettes created a sense of calm, of clarity, of a situation well under control. In truth, many of the babies were so small that touching them was less like touching a person and more like a laboratory procedure. They could be removed from the isolette, treated, and returned, without sound or speech or eye contact. Of course the babies often died, which created unpleasant scenes with frantic parents, but he had learned to present the clinical facts to the parents and then deftly hand them over to a skilled cadre of social workers, chaplains, and parent support group volunteers.
Now that he was head of the unit he hardly saw patients; the bulk of his time was occupied with administrative tasks. This unit was his pride and joy, his legacy; he had spent his professional life building it, and he was not about to let this pipsqueak couple fuck it up. He has no idea why that baby was underweight and not breathing, it doesn’t really matter, but the point is the oxygen unit wasn’t working in the delivery room when they tried to resuscitate her, and it’s not clear if the parents know that, and the hospital administration is leaning on him, hard, to keep it that way. The parents are nobody, they don’t matter, but if there’s a lawsuit people will talk, it could even wind up in the papers, and he’s not going to let his unit be tarred because those morons in Labor and Delivery can’t keep their fucking equipment maintained. He has a major fundraiser coming up, with important donors who are ready to underwrite a significant expansion to the unit. He’s been nominated for a lifetime service award from the Cox Foundation. These pipsqueak parents are intelligent, obviously; that’s not good. But they are still grieving, shaky, off-balance. As far as he knew they had not yet retained a lawyer. If he can protect the hospital on this they will owe him one.
The truth is we were confused about why we were having this meeting. It didn’t really make sense. We just wanted whatever information was available about Eva’s condition so that we knew what steps to take in a future pregnancy. Dr. Schultheis wasn’t even her primary doctor; we had never even seen him in the unit. David was at pains to stress that we were not litigious; we knew that doctors had to make split-second judgment calls every day and that it is impossible to be right about every judgment. We weren’t there to blame anybody for anything, I concurred. We just needed to know: what happened? What might have caused her injury? What could we do to prevent its recurrence? There was no internet then, remember. We couldn’t look it up ourselves. If we had been able to, we would have quickly learned that any number of common occurrences could have caused Eva’s problems; placental insufficiency; a wrapped or twisted umbilical cord; various metabolic or infectious or autoimmune conditions.
But Schultheis didn’t tell us any of this. What Schultheis said to us was:
The truth is, in all my years of practice, I’ve never seen anything like this —
— he looks me in the eye intently and searchingly —
— except when the mother was doing large amounts of cocaine during pregnancy.
— and then immediately —
Did you use any drugs at all when you were pregnant?
We leave the Death Star thinking something very rare and exceptional has happened to us; something mysterious and profound. Some lightning bolt from the universe, marking us out.
You’re the kind of person who will always get caught.
Two people don’t deserve to be this happy.
In the end, of course, it turned out to be only this. In the end, it turned out that the voice I had been hearing all through my pregnancy was coming from my blood, from autoimmune antibodies that were attacking my self, my cells, my DNA. Anti-nuclear antibodies, they said, anti-cardiolipin antibodies, lupus anti-coagulant antibodies.
Lupus, they said: wolf in the blood.
In the end the lab tests came back positive. Antibodies were gathering in my veins, just like my father’s, only instead of attacking my nerves, they had dammed the river delta of my placenta, cutting off the flow of blood, of life, to my baby.
The rheumatologist explained all this to us, explained what it meant. In some women the autoimmunity is latent, waiting, crouching, hidden, until pregnancy, and then leaps out and attacks.
Wolf takes the baby, leaves the mother bereft.
The wolf was me.
My blood was the predator, my child the prey.
I kept staring at a framed poster on the wall of the rheumatologist’s office; a Picasso collage, a guitar, form fractured, structure disconnected. In the bottom left corner, the words; disconnected:
La bataille s’est engagé.
The battle had begun. The battlefield: my womb.
Like Mei Xiang, I was losing my babies.
I believe it was Heraclitus who once said, It ever was, and is, and shall be, ever-living Fire, in measures being kindled and in measures going out. What that means on a practical level is that there’s always something that’s giving you life, and something that’s trying to kill you.
The trick, of course, is to correctly identify which is which.