Billy Who? Our “Jaundice” Experience
I didn’t love law school. After the first semester, the whole thing seemed more like an exercise in patience and endurance than a learning opportunity. I wasn’t a gunner. I didn’t spend any time in the library. I studied in my apartment living room as much as I felt I needed to do well, but not a minute more. So imagine my surprise when a vivid law school memory leapt to mind while we were still in the hospital with our newborn daughter.
I say “still” in the hospital because I genuinely thought we might never leave. J was born in the early evening. I would have been delighted to have come home that same night. I felt fine…pretty good actually and much better than I had felt in nine months. I longed for my bed and even more for my shower. I wanted to show J her room and for Chad and I to be able to sit together holding her on our couch. But, I understood that we would spend one night. Fine.
The next morning, I was beyond ready to go. I was tired of having my blood pressure taken, of hearing varying and conflicting opinions on how to feed J, of being startled every couple of hours by a security alarm sounding. When our OB came to check on us, we were all smiles and asked how long he thought we would need to stay. He said we’d probably be able to leave that evening.
Then, disaster. The nurse pecking away on the computer in the corner of the room overheard our discussion and said, “this baby has a positive Coombs test.”
I’m sorry, what?? This was the first we had heard of any issues. I didn’t know what the Coombs test was or that J had been given a Coombs test. Seeing my very alarmed expression, the OB explained that it was an indicator of jaundice, usually no big deal, and that we’d have to see what the on-call pediatrician said.
Soon after, here came said on-call pediatrician. He might have examined J for 45 seconds before telling us that we were staying another night so that J could lie on a blanket because of some blood test with a strange name. According to him, strange name blood test + the positive Coombs test = glowing blue blanket. He told us she needed to lie on the blanket at all times except when I fed her or changed her diaper. And we had to cover her eyes with padded goggles because exposure to the blue light could hurt her eyes. Apparently, our perfectly-normal looking and seemingly delightful child had some number in her chart that “required” this course of action.
I was beside myself. I had no understanding of what the problem was or what this treatment was supposed to accomplish. All I had was my very strong intuition that my baby was fine, that this blanket looked miserably uncomfortable, and that covering my baby’s eyes with goggles 23 hours a day seemed cruel. Our birth plan, which we painstakingly developed after lots of education, had been designed to maximize J’s time spent with us–time that would allow her to feel us breathing and look at our faces, time that would, we hoped, assure her that despite having been evicted abruptly from the only home she had known she was still with her parents. All of that was unraveling before our eyes, and I didn’t know why.
And this brought my criminal procedure professor to mind. I have to admit that I thought my brain had promptly deleted every bit of criminal procedure immediately following the bar exam. But sitting in our hospital room–a room that seemed to be shrinking by the hour–I remembered my professor’s lecture on suspects’ “intelligent waiver” of rights. Over and over, she stressed that “intelligent does not mean wise.” A suspect’s waiver could be “intelligent” and be the worst idea ever. Watching J, who Chad had started calling “Baby Tron,” I decided that the “informed” in “informed consent to treatment” must not mean “possessing information that would enable one to make a reasonable decision.” Instead, it must mean something like “informed that you are turning all decisions over to a care provider in consultation with your insurance company.” And “consent” apparently didn’t mean “weighing the pros and cons and coming to agreement with a recommended course of action.” Instead, it must mean something like, “failing to jump up and down on the hospital bed in protest.”
In the dark of our room, illuminated by the absurd blue glow of J’s blanket, I ruminated on intelligent waiver and informed consent. I got mad. I mean, furious. I had been determined throughout my pregnancy to be responsible for my own care. I read everything I could get my hands on, went to classes, found an OB we trusted, hired a doula. Because of that, I felt that the pregnancy went well and that we had a positive labor and delivery experience. I felt that I had done right by J by learning about how to give her what we believed to be the best birth experience possible for us. Now, I sat ignorant in the dark–not knowing what was going on with our child or the risks vs. benefits of the treatment being recommended (well, not recommended…proscribed–we were not presented with any options at any point). I felt like J’s care (along with our freedom from the hospital) were at the mercy of some random doctor with whom we had no relationship.
So, at about 2 in the morning, with J and her ridiculous getup in one arm and the iPad in the other, I started doing research. Hand to God, I googled “Billy Ribbon.” I knew that couldn’t be right, but it was the closest I could come to spelling out the phrase the pediatrician had used when talking about the “number” that was problematic. Fortunately, Google is smarter than I am and knew I was looking for bilirubin. I read everything I could find. I wouldn’t have thought that I would be capable of reading a medical journal article within 24 hours of delivery, but it turns out that anger and determination trump exhaustion and hormones.
The more I read, the more I was convinced that this treatment was so overly-aggressive as to be downright silly. I remembered the “Billy Ribbon” number that had come up for J, and I could find nothing that recommended phototherapy for a full-term child with that number. So, when the pediatrician came back the next day, I had questions.
I should stop at this point to make a few statements: I am not anti-doctor. I know and love many doctors and other health care professionals. We were in one of the best hospitals in our region, and the staff treated us well. And, yes, I know that we were very lucky that so little was “wrong” with J. We were thrilled and grateful to have a healthy baby, and I understand that complaining about this experience is a luxury.
Back to my luxurious complaining:
Before I could launch into my questions, the pediatrician announced that we would be staying an additional 24 hours because J’s bilirubin number had gone up. Turns out that the miraculous blue blanket wasn’t cutting it. Now she would need to lie in the infant cart in our room on top of the blanket and under additional lights.
Perhaps my face tipped him off that I didn’t feel good about this. So he whipped out a Chart! Here was J’s number, and on this line right here, it’s a little high, so we need to do this. Hadn’t anyone shown us this Chart!?
I told him that I found the Chart! the night before when I was researching bilirubin.
Apparently, mentioning that you have undertaken independent inquiry into a condition will never appear in a book entitled “How to Establish a Productive Rapport with the On-Call Pediatrician.” I could tell that a switch just flipped in his mind. I was no longer Patient X in Room Y. I had suddenly become THAT Woman.
I asked about the Chart!. Why were we looking at a line on the Chart! for premature infants (after all, there was nothing premature about J)? What caused the bilirubin test to be done in the first place? I had read that Pitocin could elevate bilirubin levels–could that be the issue? (I must share with you that he responded by saying “EVERY mom has Pitocin now, so you really can’t attribute anything to Pitocin.” I don’t pretend to know anything about medicine, but I am familiar with basic principles of logic, so my trust level for this guy plummeted). I asked my questions, I think, calmly and respectfully. I mentioned our strong desire to take J home soon so that we could all be more comfortable.
At this point, the pediatrician made a statement that will never appear in a book entitled “Good Bedside Manor in the Maternity Ward.” He told me, in a voice dripping with condescension, that I might think I wanted to go home, but I would actually get more rest here in the hospital. I mean, people are bringing food to me! The bathroom is right there! The living room and the bedroom are one and the same! There are nurses to check on me! And I can ship J right down to the nursery so I could sleep!
Did you ever watch Designing Women? Hearing this speech from the pediatrician made me mentally launch into a Julia Sugarbaker tirade–southern accent and all. He had to be KIDDING. The food being delivered to me was adequate, but unappealing. My home, shockingly, has several bathrooms, all conveniently located. With family members at the hospital to visit J, I needed some space and places other than the bed for people to sit, and perhaps an area to stand quietly by myself occasionally since I had, after all, just endured a fairly significant life event. My husband, who is J’s father, not just an accessory to this experience, could use a place to sit and sleep that he didn’t have to share with our bags and company. The nurses, while lovely, were not comforting. It was not restful to have someone poke around my uterus every few hours or to ask me for the millionth time to rate my pain (and can we talk for a minute about what a useless exercise the pain scale is? I just gave birth…rate my pain now compared to WHAT? When I said that I wasn’t in pain, I was just sore, the nurse looked at me like I had three heads. Turns out, narrative responses to the pain question are unacceptable, so I just said, “One.”). And I had waited my whole life plus 42 long weeks to meet and care for J. I was not sending her to the nursery thank-you-very-much.
I will not detail the rest of my mental rant, except to mention that it included some unbecoming language and references to why health care is so expensive and ineffective in this country.
Part of me wishes that I had said every word of this out loud. I didn’t. I let him leave the room. They brought in the lights. We stranded poor J in the plastic bin with the goggles still on. I watched her from a chair beside the bin. And I cried and shook and took all of my frustration out on any family member who dared say any version of “doctor knows best” to me. I felt helpless. I didn’t feel that I had enough information to have a more productive conversation with the pediatrician. After our last discussion, I had no confidence in the pediatrician, but I didn’t know what to do about it. In the midst of a total meltdown, I told Chad that we had to get a second opinion and that if nothing changed and we weren’t released the next day, I wanted to talk about signing an “against medical advice” form and leaving. I told Chad that he was going to have to talk to the pediatrician because I had been branded THAT Woman and was too emotional at this point.
The rest of our stay was much the same. We were finally sent home, but we were sent home with a rented bili-blanket and instructions to have J’s blood taken every day. When we saw J’s pediatrician, she immediately took J off the blanket. Everything she said (and especially what she didn’t say) told me that she would not have treated J for jaundice or anything else based on the numbers in J’s chart (leaving me feeling somewhat vindicated but even more distressed about the whole process).
And this is the point: despite the existence of the Chart!, medicine, like almost everything else, is subjective. I don’t know when the collective “we,” as patients, were relieved of all responsibility to actively manage our own care, but it seems that the norm is for us to enter health care like sheep. Who can blame health care providers for herding us through the system if we don’t consistently demand information and insist on making the ultimate decisions? I definitely expressed my displeasure during the bilirubin debacle, but, looking back, I should have done and said more to take charge of that situation. We might well have ended up doing exactly what the pediatrician recommended, but we would have done so intentionally and with the knowledge that we stepped up as J’s parents and took responsibility for the decisions that governed her care.
I learned so much from this experience. And I think our whole system would be better off if “informed consent” actually meant what it sounds like it means.