By Tereza Hubkova, M.D.
I've likely spent many hundreds of hours reading, writing, and talking about the risks of the U.S. health care system, how you can protect yourself against those risks, and how being an informed, determined, and vested advocate can reap great rewards in your care or the care of your loved-ones. Yet, sadly, despite my greatest efforts — despite being a respected physician — I have witnessed firsthand, from a patient’s perspective, what can happen when we place our full faith and trust into the hands of the medical establishment.
Thankfully, what I’m about to recount ends with everyone involved happy and healthy. Yet it is for me a stark reminder of the limits of our health care system as well as a reminder of what can happen when we, the patients, drop our guard while being cared for. What this is not is an indictment of any individual doctor or health care provider. Everyone involved was doing their jobs to the best of their human, fallible, and resource-limited ability. But as we've learned many times over, sometimes that’s not good enough.
Though due in September, my newborn daughter was born early — at 36 weeks of pregnancy. That made her a preterm baby — not a premature one, as most organ systems are well developed by 35 weeks. Neither was she underweight — 6 lbs. 12 oz. at birth. But a little extra caution was advisable as preterm babies can be a bit more frail and susceptible than their full term counterparts. Despite being a board-certified internist with over fifteen years of experience, working almost exclusively with adult patients, I had very little experience treating infants and young children. Therefore, just as millions of other parents, I would rely on a pediatrician and other pediatric-trained medical professionals for my baby’s health care needs.
Within the first couple days of birth, my daughter was doing quite well — except, perhaps, not breastfeeding quite as well as we would have liked. As with most newborn babies, she initially lost about 10% of her body weight and developed neonatal jaundice. Jaundice has numerous causes, but most directly relate to liver function, the breakdown of red blood cells, and bilirubin levels in the blood. The most obvious sign of jaundice is a yellowing of the skin. It affects about 60% of all babies within the first week of life.
If neonatal jaundice reaches a certain level (measured by a blood test of the serum bilirubin level), babies need to be treated with phototherapy — placed under a specialized blue light of wavelength of 420-448 nm. This particular spectrum of light helps to oxidize and break down the bilirubin, which is then excreted via normal bowel function. Though my daughter’s measured bilirubin was close to the level where phototherapy was necessary, the hospital’s pediatrician felt that it would likely start going down without any intervention — as it does for most newborns — and discharged us from the hospital on day four — with visiting nurse follow-up to be performed at home to ensure our progress.
Unfortunately, the next morning the visiting nurse drew my daughter’s blood from a heal stick (much like the finger prick you may have experienced as an adult), which showed that her bilirubin level was in fact bit higher, rather than lower. The next morning again, her bilirubin was higher still, and so that evening we were recalled to the hospital for admittance and the aforementioned phototherapy. The admitting pediatrician at that time expressed surprise that we were discharged those two days earlier — when her bilirubin was already high — given that she was a preterm baby, making her more susceptible to the harmful effects on her brain of high bilirubin levels. She was also upset that we had not arrived to the hospital until about 5 PM (we received the phone call to return at 3:30 PM), since she had placed the order for us to be readmitted shortly after seeing the latest bilirubin results, around 1 PM.
My daughter did extremely well under the blue lights, and her bilirubin level decreased sufficiently by the next day. She also began to slowly regain some of the weight she had initially lost; and so pleased with her rebound we were discharged home once again. No one informed us how long it would take for the jaundice to resolve completely, so neither myself nor my husband were particularly alarmed by our daughter’s ongoing yellow color, which we assumed would take some time to clear. Following one last visiting nurse check-up a few days later, which showed the bilirubin further decreased, we were sure we were out of the woods.
I wish now that I had spent more time searching the Internet, investigating for myself all the ramifications of bilirubin as well as any risks of its treatment, but as I was sleep deprived, as any new breastfeeding mom would be — often getting less than two or three hours of sleep per night — all I cared about was feeding, burping, pumping, and changing the resultant diapers — and eating something myself. Typically, by late afternoon I would be still in my pajamas, longing to brush my teeth and take a shower, no extra energy for online research — especially since I didn't think there was any reason to be concerned.
Sometime around the third week of my daughter’s life (perhaps a week or so later), I noticed that her stools were getting darker. At that age, an infant’s poop should be a mustard-yellow color. And I also thought that her jaundice-color was more pronounced. I say “thought” because as any new parent can attest, when you’re looking at your child for many hours per day, subtle differences can often be overlooked (or attributed to your own ongoing sleep deprivation). The following day her jaundice was distinctly worse, and so I called her pediatrician. She was out of town for the day, but we got appointment for the following day.
The two prevailing theories for the resurgent jaundice were: breast milk jaundice – a poorly understood but benign condition that eventually resolves on its own; or hemolysis – a worrisome condition where baby’s red blood cells are prematurely broken down by antibodies that had been introduced into baby’s circulatory system from their mother — or more rarely, due to a genetic defect of the red cell membranes. Our pediatrician ordered complete blood work up and blood smear, including liver function tests and bilirubin level as well as thyroid hormone level. Because breast milk jaundice is a diagnosis of exclusion (the remaining possibility after all others are rules out), the goal was to rule out hemolysis as the likely cause.
We went to our local hospital where two vials of blood were drawn from my baby girl’s vein. My heart was aching for her. She cried, of course, but I was also concerned about the amount of blood drawn. Two vials for such a tiny baby seemed equivalent of someone taking half a gallon of blood from myself. I mentioned it to my pediatrician the next day during follow up, but she said it only looked like a lot of blood, when in fact it was very little. Then, she ordered yet more blood tests, as my daughter was found to be anemic (when there are too few or abnormal red blood cells) — as well as continued monitoring of her bilirubin level.
So, the next day my baby had more blood drawn. The results showed worsening anemia. She had just had another two vials of blood taken from her, and I so grew more concerned over the amount of blood taken. I again voiced my concern to our pediatrician as well as the phlebotomist, but was reassured that it is really not as much blood as it seemed.
The following day, we had a simple heel stick, of which the result looked a little better, but not great, so yet one more blood draw was ordered for Monday.
Reluctantly we complied, thinking that professionals know better, and reminding myself that I am not a pediatrician and should not interfere with the diagnostic process. I asked my pediatrician, however, if she was aware of the amount of blood drawn with each of her orders, this time asserting did she know it was two adult-sized vials? “No,” she responded in disbelief, “I thought it was only one milliliter!”
The results that day showed further worsening of her anemia – this time to a concerning level. There was no evidence of hemolysis (breaking of the red blood cells), so the only other conclusion really had to be that the anemia was caused by all the blood draws. Our pediatrician came to our house that evening to check on my daughter. She noticed a heart murmur (possibly caused by the anemia) and since I reported that she didn't eat as well and seemed to take longer breaks and breath faster during feeding, we were sent to a larger hospital an hour away for observation to make sure she would not need a blood transfusion.
You can imagine how disturbing that was. I drove to the hospital, one hour away from us, in the dark of the night, tears running down my face. “I should have prevented this; I should have stopped the blood draws right away.” But I trusted people whose job it was to draw the blood to know when it is too much, and I trusted the pediatrician to know how much blood is actually draw when a test is ordered.
It turns out I was wrong – they didn't know; and I should have protected my daughter better. In some hospitals, apparently, they can do tests on babies from just a drop of blood. But that technology was not used by our local hospital. I wish we were offered an alternative; I would have driven anywhere to get the test causing my daughter less distress and, as it turns out, less damage. But I didn't know.
Not being a pediatrician, but being a physician, however, I knew the possible complications of blood transfusion and I was agonizing as I drove to the hospital – what if something happens to my baby? None of this would have happened if we didn't have all the blood tests done.
The jaundice was breast milk jaundice and resolved on its own within the next few days. At the hospital, my daughter was monitored overnight (her heart rate, breathing and oxygen levels) and fortunately, seemed to tolerate the anemia well enough to be discharged without further blood draws but on supplemental iron taken orally.
“Diagnosis… Normal, healthy baby.”
She did well, but we learned a hard and valuable lesson. You can’t always trust even the best-intentioned professionals. Everyone did their jobs according to their training, but like the childhood game of telephone, when messages are conveyed from doctor-to-nurse or doctor’s office-to-hospital, important pieces of information can get dropped. Trust your gut feeling and advocate for yourself, and your children. You are the one constant in your care; you have all the pieces of information. Educate yourself on every issue you are dealing with. If in doubt, seek a second opinion.
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