22/04: The Bilirubin Battle Blog
Cassey gave birth to a healthy baby boy at 6:56AM on April the 8th. (That was this past Thursday.) The hospital was St. Francis in Lynwood.
Compared to Bellflower Medical Center, the staff at St. Francis was much more friendly. They didn't forget to bring Cassey her meals, and they let Cassey have her baby as a rule, not just when she asked for the baby. The Bellflower staff kept Jasher separated from Cassey for long periods of time, and instead of bringing the baby to the mother to eat, they would sometimes bottle-feed, which was most alarming after the trouble we had getting Ephraim to breast-feed. (We couldn't get him to breast-feed, which, fortunately, is a difficulty we have not had since.) When I had questions, the St. Francis staff were willing (and obligated by policy) to answer.
The downsides are, that they charge for parking (I and my wife could get parking validated, but they weren't very forthcoming with that detail), and they had this odd and discomfiting policy whereby only hospital staff are allowed with the patient while they prepare her and her room for delivery. To me, that is a fundamental failure to see to the safety and comfort of the patient. Like having a lawyer in court, we should all have the right to an advocate at the hospital.
The hospital is one of many places where we would hope that people have our best interests in mind, but this is not always the case. It is, in fact, very often not the case. School guidance counseling is another similar scenario, but the level of vulnerability isn't the same. I'm not saying guidance counselors, nurses, and doctors are all evil. However, they do not really work for us like we would like them to. They work for schools, hospital, insurance companies, etc. They have enrollment quotas, hospitals, principles, insurance companies, malpractice insurers, and a host of other interests which can very often take precedence over our paltry best interests.
The day Cassey had the Baby, a pediatrician attached to the hospital came to visit and announced that he would be our baby's pediatrician proceeded to presumptuously talk about care our child would be receiving from him in the future. This being our third child, of course, we already had a pediatrician, and the overall impression I was left with was that this guy was hard up for patients. As soon as he left, my mother-in-law expressed the same feeling I had, that this guy was angling for a new patient. Little did we know how underhanded he would be.
Just like our stay at the Bellflower Medical Center, the doctor wouldn't let Cassey go the next day. I vaguely recall that our first doctor, back when Ephraim was born, gave us the option of leaving or staying another day. We left, which seems more and more wise, the more kids I have. Whatever you do, get out of in-patient care as quick as you can, and stay out as long as you can help it. It's like being in prison, except, without the stigma. (Disclaimer: I've never been in prison. I merely make the comparison on the basis of the suspension of basic rights. It would be nice if hospitals gave patients access to libraries, and other such facilities. Nevertheless, I think I'd feel safer in the hospital.) (Disclaimer: I've never been in in-patient care within the scope of my memory. I've only observed it.)
This is an issue with the doctor, however, who apparently had too little respect for the autonomy of his patients.
The situation took an unexpected turn for the worse early on day 3, when Math was a little less than 46 hours old. At that time, he was taken to have blood drawn for an unassuming test. Later that day, our nurse came in and told us that she would have to take the baby, right then and there, for double phototherapy by order of the pediatrician. The baby would have to stay overnight and could be released the next morning pending the results of a follow-up blood test.
Now, I already don't trust the pediatrician. But aside from that, I had parents coming over that evening, a priesthood lesson to take care of the next day, a wife producing milk who wants to keep producing it (who has already had trouble getting one child to breast-feed), a baby who slated to have to undergo some uncomfortable isolation, and no guarantee that things would be better the next morning. I'm also concerned that the doctors and the hospital are inconveniencing us for the sake of milking our insurance company.
The nurse assured us that we would be able to visit every two hours to breast-feed the baby. That, however, was not very comforting, and turned out to be one of those vicious half-truths. (We began hearing a lot of those.)
So, I started asking questions. I started with this one: Why did my baby need phototherapy?
We were responded that the blood test had shown that the baby was jaundiced and that jaundice was dangerous and could cause brain damage.
I noted that Math did not look very jaundiced. I also noted in the back of my mind that Jasher was jaundiced, and nothing like this had happened. Our pediatrician had asked us to make sure he got some sun, and that was it. (Now that I know more, I understand that Jasher's case didn't necessarily relate to Math's case, but nevertheless, I distrusted the doctor and the cases did relate well enough for me to know that the nurse's simplistic explanation wasn't sufficient.)
The nurse responded that the level was too high for sunlight to be an effective treatment. She also noted that I didn't look happy, as she walked out of the room with my baby.
At that point I began pacing, and thinking. I didn't know much about jaundice and I didn't have access to the Internet, so I started by reading a flyer the hospital had given us on the subject. Jaundice is caused by a buildup of bilirubin in the blood. Jaundice is normal in newborns. In fact, most newborns become jaundiced. Our livers normally process the bilirubin in our blood, but in newborns, it takes some time for the livers to get into full gear, and bilirubin levels will rise.
At this point I was stuck, so I paced some more and started writing down questions. What bilirubin level did my baby have? What's normal? What's dangerous? How does the bilirubin level fluctuate in a normal baby? Et cetera.
After stewing with these questions for a while, I requested to speak with my wife's nurse again. All I discovered was that the level was 9.0 as of about 5am that morning (46 hours old) and that it was 5.1 as of the day before. She didn't know the units of the numbers, and she didn't know anything about normal or dangerous. She suggested that the doctor may have been concerned about the sharp transition from 5.1 to 9.0. (The shifting story, obviating her ignorance, made me feel no better at all.) Our nurse also suggested that I speak with the nurses in the nursery where the baby was taken, as they should be able to answer my questions.
My next step was to call my Dad. I was fortunate to get them before they left to come visit us. My Dad obligingly got on the computer and found some very useful information and charts which he described to me in sufficient detail for me to discover that the units were probably mg/dL (though micromols/liter were also attested). I also learned that 9.0mg/dL is not very dangerous and that from two separate sources, was not considered cause for recommending phototherapy at 48 hours, even in the event of low birth-weight such as 2000g (as one might find in the case of a premature birth). Math, for his part, weighed about 3200g at birth.
My Mom took over the phone call and the computer over my Dad's protest and informed me that she felt I was making a big fuss over nothing, that it wasn't worth the fight, that I didn't really know the doctor wasn't right, etc.. I don't think I exactly won her over to my side, but she ended up trying to be helpful. (Thanks again Dad for the facts and figures.) The fact was, I wasn't exactly sure of myself yet, but what I was learning was giving me more questions to ask, and that if the answers were what I expected, I would be fighting the doctor in whatever way I could. If we let our doctors lie to us, steal from us, and generally walk all over us, it's not just a matter of each individual battle, but we end up losing a war over our rights as patients. That's more or less what I told my Mom, in summary. (She has her own battle she's fighting, though the consequences are somewhat more serious in her case.)
So, if the units were according to the apparent standard, my baby was well within the safe zone, but my doctor was recommending some pointless, yet expensive treatments, probably to pad his own wallet. (In hindsight, I wonder if he expected to scare us into working with him to get further pointless expensive treatment in a sort of doctor-induced hypochondria.)
Having gotten what information I could from the Internet, I was left with nothing to do, apparently, except wait for the nurses to take my wife over to feed the baby.
While I waited, I figured I'd start loading up the car in preparation for my wife's departure, so I grabbed a few bags and headed out.
On the way back, I succumbed to the temptation to go over to the nursery where Math was being held hostage, so that I could get the rest of my questions answered. When I got to the building where Math was being kept, I was directed to a phone I could use to contact a nurse in the room where the babies were in phototherapy.
I told the nurse I had some questions about the blood test results, and she indicated that Cassey's nurse should have been able to answer those questions.
When I informed her that I had asked that nurse, but that she hadn't known the units of the numbers, the nurse I was speaking to told me that there were no units.
I told her that all numbers have units (which isn't true, strictly speaking, but true enough for just about all meaningful numbers, and certainly applicable to the numbers we were discussing), so she asked me if I'd googled it (which I thought was interesting, considering I had, but that doing so was not easy from the hospital).
I informed her that I had and that the standard seemed to be mg/dL, but I found micromols/Liter to be another standard unit, and wanted to clarify which it was.
Well, this left the nurse with some research to do, so she told me she'd look into it and offered to let me come in to see Math, who hadn't gone under the lights yet. So I jumped at the opportunity. It meant coming around through a hall to a room where I was to wash my hands and put on a smock.
When I arrived, I found a nurse bottle-feeding Math, which he probably needed, but also means they weren't very serious about giving the mother the opportunity to feed the baby. (As it turns out, it takes their transportation people at least 30 minutes to get a patient from one building to the next. Cassey's nurse, of course, knew that, and knew that it would be practically impossible to keep up breast-feeding while the baby was in phototherapy.) I told them that Cassey was coming (before I left Cassey in her room, they had made noise about bringing her over), but they ended up having to call to get things started.
Another interesting thing I saw when I arrived, was another father who was asking questions about his baby, apparently worried for the baby's health. The nurses told him that they couldn't tell him what a normal bilirubin level was, but they cited the high 20's to 30 as being the level at which brain damage might be an issue, and they assured him that before his baby got anywhere near there, they would be taking further measures to protect his baby. I was left wondering what his baby's bilirubin level was. I was later to find that baby under the lights with his eye protection off of his eyes. The nurses quickly righted the situation when I pointed it out, and I didn't make a fuss about it, (the baby's eyes were closed... when I saw them) as I understand that accidents happen. Babies wiggle, and the hospital staff isn't omniscient. However, I was left to wonder at the arrogance of doctors and nurses who defend taking a healthy child away from intelligent and loving parents. (Shall we trade low-level jaundice for blindness?)
Anyhow, when I settled the matter that the units were the same as I expected, I noted for the nurse that 9.0 was a very normal and low-risk bilirubin level for a 48-hour old baby. She conceded the point, but continued to argue that since there was a risk (even if so low), wouldn't it be better to get the therapy and reduce the risk rather than have to come back in later? I told her that it was decidedly not better. I was also told that I could not refuse consent for treatment, or remove the child against medical advice. I was told that the doctor would be called, but there was no way the baby was going home that day.
I had been given Math to hold and was holding him for most of my conversation with this nurse. Cassey took so long that I felt obliged to continue with his bottle feeding. Unfortunately he wasn't very hungry when Cassey got there, but he did eat a little more.
The doctor called while Cassey was feeding Math and I had the opportunity to speak with him. I told him that 9.0 was a very normal and healthy level of bilirubin for a healthy baby at 48 hours old, which he conceded to. I also told him that I wanted my baby discharged, as I didn't see that there was any call for phototherapy in Math's case. The doctor seemed a bit taken aback and tentatively agreed that we could have the baby discharged on the condition that we bring in the baby the next day to have another blood sample taken. I begrudgingly agreed to that and he asked to speak with a nurse, who read the test results back to the doctor and informed me that the doctor would let us take the baby on the condition that we come in for another blood test and refrain from breast-feeding until the blood test results were in. This, of course, was unacceptable, but not so unacceptable as the alternative, so I suggested to Cassey that we agree, but that I wouldn't hold her to the no breast-feeding stipulation. A lie, of course, but the doctor has already been dishonest to us, and we had no other recourse as parents. I generally consider this a matter of the security of my child, and I conider it no sin to defend him by strategem.
So, we secured Math's release and then left to get Cassey discharged. That took a couple of hours (even though the doctor was "on his way"), and then finally we got Math and got out of there.
The blood test the next day was uneventful. The doctor tried to get us to stay at the hospital to wait for the results, but we wouldn't.
The bilirubin level turned out to be an unalarming 11.0. (Once again, about 40th percentile for a baby at that stage.)
The doctor tried to set up another appointment with us, but we informed him that we would be seeing our own pediatrician. (Our own pediatrician confirmed that the bilirubin levels cited above were unalarming.)
Al in all, it was a lot of work, but I really don't think that a parent should ever do less. In my case, I really expect nothing more than that the doctor was trying to squeeze some money out of the insurance company. However, there are also more sinister possibilities. The bottom line is that while the state apparently eschews trusting parents in favor of doctors and nurses, we, as parents, are still ultimately responsible for our children, and there's no reason why we should be trusting total strangers with our children. Further, whenever, someone tries to get between you and your kids, can't show good cause, and is apparently being deceitful, you have reason to be suspicious of their motives. Get your kids as far away from them as possible because they're probably up to no good, whatever that no good may be.
mb wrote:
This is where a little knowledge (very little in your case) is dangerous! A Total Bilirubin of 9-11 mg/dL (that's miligrams per deciliter) is very dangerous, especially when it continues to rise. Bilirubin can cross the brain membrane causing mental retardation, CP, deafness and death, yes, death with as little as 10 mg/dL. So that evil doctor who was trying to rip your insurance company off was only trying to protect your newborn...you see, I have a beautiful 2 1/2 year old granddaughter that I could only wish the doctors would have been so proactive, they were not. She doesn't walk and she doesn't talk an elevated bilirubin that went untreated. Five minutes of over the phone computer googling dad did for you wasn't really a sufficient amount of knowledge gathering....you should have listened to your mom or perhaps the Dr.