Hyperbilirubinemia, Update

Some of you might remember the baby with hyperbilirubinemia from my “Principles or Patient” entry a couple of months ago. She was a 5-day-old estimated ex-36 week gestation baby who I came across during a community visit who was bright yellow and very scrawny. She had been born to a teenager who still didn’t have much in the way of breast milk in and only sugar water to give as a supplement. I pressured them to come to the clinic for a bilirubin check and found the bili to be 26 and pressured them, again, to go to the national hospital in Solola for phototherapy. Initially (in the first day or so after finding her) I was feeling good about this case. Here was a baby with a relatively simple, reversible problem who, because of the good fortune of having the house-to-house visits as part of the health promoter program, was identified and would be saved from a probably destiny of kernicterus-related brain damage or maybe even death from failure to thrive in the first weeks of life. But I quickly despaired as she took a turn for the worse and ended up in the national hospital in the City (Roosevelt). I felt terrible for the family as the weeks and then months went by and I knew she was still hospitalized. I suspected that they must have found some serious condition and were trying to get to the bottom of it. I have to admit that I did wonder at times if I’d cost the parents (in terms of money and emotional resources) something they weren’t prepared to “spend”. In otherwords, was this a baby that was “supposed to die” and I’d paternalistically, confidently come in and tried to save the day in a place where babies that are “supposed to die” and are saved can compromise the health and future of the whole family as they drain all the resources. I don’t mean to say that I believe in a concept of “supposed to die”, as if some babies are marked to make just a quick trip to the world and then they are to die and we shouldn’t be trying to save them. Rather, I’m thinking more about a principle of nature where only those who can survive in a harsh environment survive. Stepping in to save one who wouldn’t have survived may be fine if you are there to continue to care for it but if you aren’t, is it wrong? What if the hospital found liver failure? Would this baby have been better off passing away from failure to thrive leaving the family to mourn but move on? What would it be like for them to put themselves in debt, struggling to care for this seriously ill baby, only to have it not make it or make it but with a condition the family couldn’t continue to care for in rural Guatemala? All these questions were going on in my mind as the months passed.

Today I finally saw the family: the mom was now home from Roosevelt with her baby. My happy relief at seeing them out of the hospital and back in their village melted into pure sadness, confusion, and indignation as the mother recounted for me their last three months.

She told me that when she took the baby back to Solola for the bilirubin follow-up check (after 5 days of phototherapy) they had to re-admit her because she had a fever. Soon thereafter, just following a shot, she had a seizure and stopped breathing. They intubated her and did some studies that showed her platelets were “way too low” and she was “bleeding all over” including her brain (it’s not clear to me how they would know about the cerebral bleed as they have no CT or MRI there…maybe US but somehow I doubt it). She said she heard the nurse say to another nurse “surely we mixed up the medicines” giving one that had been meant for another patient. She said she tried to ask questions but they got angry with her, saying “we weren’t talking to you”. They told her the baby needed to go to Roosevelt by ambulance and would likely die within an hour, before making it there. She started to cry and said that if the baby died she’d come back to the hospital not with the baby but with a lawyer. She said the doctor laughed and said, “your baby isn’t the first baby to die. We have babies die all the time.”

She got into the ambulance and just a half-hour from Roosevelt, the ambulance had to swerve because of an accident in the road and the breathing tube came out. The baby’s heart stopped. They attempted to rescucitate her but couldn’t and let the mom know she had died. The mom said she was hysterical. She said they pulled into Roosevelt and unloaded the baby slowly because she was dead. But the doctors there began to put “irons on her chest” (defibrillate) and chest compressions. They were successful in reviving her and took her to the intensive care unit. There she remained intubated for one month. At one point she needed to be put on a high-frequency oscillating ventillator. The mom said other patients told her not to let the doctors put her on that machine because it blows too much air in and the babies on it always die. But, thankfully, she only required a few days on it and then stabilized. Over the course of her time in the ICU she had three separate paros cardiacos (asytoles) where they had to do chest compressions. But, ultimately, she did stabilize. Thereafter, she was sent to the wards. Her mom said the baby had lost down to 2 lbs from her 6lbs at birth (something that is surely incorrect…maybe 2 kg). One day she vomited and stopped breathing. She had to be intubated again but recovered from that setback quickly. Overall, she spent 2.5 months in the hospital.

I asked if the doctors had given her a diagnosis and she said they hadn’t. I asked if they’d given her any papers. She said she’d asked for some papers telling what the baby had but the doctor had said he’d already given her information so it would take too much time to do it all over again. I asked, “so, he had given you papers then.” “No,” she told me, “he’d talk to me every couple of days and give me an update.” “Did they ever tell you what had happened in Solola that resulted in her having to be transferred?” I asked. She said they’d commented to her “de plano que le equivicaron con la medicina” (Surely they gave her the wrong medicine).

I asked what kind of prognosis they gave. She said “no me dieron mucha esperanza” (they didn’t give me much hope). They apparently told her the baby would probably not be able to see. But the mom explained to me that she thinks the baby can see. I asked if they sent her home with any medications. They’d sent her with two. One was vitamins and the other she couldn’t remember but she didn’t buy it because there wasn’t any money. And they also wanted her to use an added-rice (AR) formula but they hadn’t been able to find that anywhere. She said they’d told her the second medicine was very important and that she would die within a month if she didn’t have it. I left her my cellphone number so she could call me with the name of the medicine.

So, I had a lot of thoughts going through my head after this conversation. Just like with many other conversations I’ve had with people about their time in the hospital, I was left very confused; trying to piece together something that made sense. She described the defibrillation, the intubations, the high-frequency vents well enough that it did seem like she had a pretty good sense of the series of events, at least. The comments by the doctors and nurses are almost impossible to believe but, then, stories of callousness and disrespect are the only stories I hear from patients who have been to the national hospitals (including patients I know very well and feel I can trust, like Vicente). Maybe she really was treated like that. Why did the baby get sick so suddenly when all it seemed to have was hyperbili and mild prematurity with some feeding difficulties. Was there really a medication error or did mom just misinterpret circumstances (coincidences like the seizure just after the shot and maybe a misunderstood conversation by the nurses). I’m inclined to believe there wasn’t a medication error and, rather, the baby became septic for some reason, developed DIC, dropped her platelets, and had a head bleed. Did the doctor really laugh at the mom? Did he really say that she wouldn’t be the first to lose a baby?

I do believe that there were no records and that surely they would have refused her request to give her anything in writing. That’s just the way it is at the national hospitals. They are so overworked and understaffed that there are no hospital summaries or even diagnoses recorded for the patient at discharge. It’s terrible for care. I never can figure out what my patients coming out of the hospital had done there or what ongoing care they were to get. And no one will probably ever know what happened in Solola that accounted for the baby’s crash. If it was a malpractice issue, it’s now ancient history. There is no such thing as malpractice suits here in Guatemala. Without records, how would anyone ever win such a case anyway?

How unjust is this system that a young mom, trying to pull out all stops for her daughter, has to rely on a hospital where the care is of questionable quality, the information provided to her and other practitioners is next to nothing, and there is no accountability for the care that is given (or fails to be given)? How can I pressure other parents to take this step with their child? This baby is likely to end up severely mentally retarded, blind, and handicapped. She will have little in life given that she won’t get special education or physical therapy. Mom may never find a husband if she is caring for such a child. Maybe she’ll have a series of fatherless children and will struggle greatly to feed and clothe them. The family will live their whole life thinking that all the harm that befell their child came from doctors. They may not seek medical care in the future or will wait to do so until very late in an illness course. And we (visiting and local doctors) will criticize them for not trusting our advice and care, for not seeking care on time, for not finding a way to provide enough food for their children. And we will forget (or will never have known) why the family feels the way they do about doctors and western medicine. And they will share their experiences with their relatives and neighbors and even more families will shy away from clinics and hospitals. Certainly they will shy away from gringo docs passing through towns offering medical advice.

How could it be that families have no ability to investigate or collect damages from doctors who carelessly harmed their children (whether that happened in this case or not)? What keeps doctors in line and makes sure they treat patients with respect, keep studying the literature, avoid toxic treatments, provide high quality care? Nothing! Is that why it is so common to find patients treated by other doctors here who got a treatment that doesn’t make sense to me (and often find patients treated in frightening ways). The injustice of poverty permeates everything. It isn’t just about not being able to buy medicines or pay for a doctor visit. It’s about all the things that make this case so devastating.