Friday, February 03, 2006


The premature baby lay in the incubator, attached to a ventilator through a tube in her mouth, with catheters coming from her umbilicus and monitor leads from her chest. You would think anyone would recognize her as a sick baby, but her father, after visiting her for the first time, came to the nursing station and said cheerily, "So, is Baby Doe eating okay and everything?" We needed to have a serious discussion about his baby's condition. When I went to see the mother of the same baby, eighteen hours after birth, she too was unworried and said, "Is she gaining weight okay?"

When I went to medical school, I never realized how hard it would be to get some patients to understand things, not because I didn't try hard, not because the patients or parents didn't pay attention - although that's a whole issue by itself - but simply because the gap in our knowledge bases is so wide. It's tempting to sneer at the parents' ignorance, to denigrate them as idiots, but that's not fair - they have no way of knowing. Yet to bridge that huge gap is no easy thing. Doctors are often criticized for not explaining things well to their patients, but what makes anyone think it's possible to explain some very complex conditions to people with limited educations and understanding?

Bronchopulmonary dysplasia, for example, is a complicated chronic disease of many premature babies. For years I've tried to explain it well to parents, but often neither they nor I are satisfied with the explanation. But why do we expect it to be easy? I've had four years of college, four years of medical school, plus several years of training and practice beyond that, and I, like other neonatologists, don't completely understand bronchopulmonary dysplasia. There is no way these parents will understand it. So we simplify, but every time we simplify we lose a little reality; we repeat, but when we repeat, we see the attention ebbing.


Anonymous Karen in KC said...

Let's not forget the possibility of denial. I agree that there is a major educational gap but even the most educated and prepared-for-the-worst parent will probably experience some level of denial along their journey.

2:51 PM  
Anonymous Chris and Vic (CAK) said...

I agree with the power of denial as a temporary---and a very good---coping mechanism.

Your unit and every other unit, needs a patient education specialist, who works hard at taking baby-steps, and is willing to repeat, till the parent is "ready" (Shakespeare said "Readiness is all")to grasp the realities. You can only take very small doses of bad news, anyway.

I would love to have that job! I am "ready".

10:24 AM  
Anonymous Sylvie said...

Wow I wish I had the positive attitude all would be ok when Lilike was born to stop the stress of the NNU making me sick. One nurse told me my daughter with a high white cell count on her day of birth could be just from stress or a possible infection. But most likely stress. Which was later to be found a band nutorphil of 70 and all blood cultures came back negative. I later found out on Lilike discharge records. She was treated as having suspected sepsis but she was born with TTN and she demanded for and drank all given bottles of formula! A different nurse a fill in taking care of Lilike told me my term 7 pounder baby who did not need a ventilator, cpap or nasual cannula. But 23-28% 02 in a humidicrib for 1 night only. She said my daughter look like she had an infection and that the high white cell count was not stress but most likely an infection. No wonder I vomited, from not just watching the ivs they asked me to watch put in for antibiotics, but from the feat of loosing my girl to sepsis! I prayed to God I coudl take her place!

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