Loss

Our rounds the other day were accompanied by the sound of weeping. It was nothing complicated. A baby had been born too soon, struggled for a few days, and now was breathing his last, and the family was devastated.

On a somewhat related note, the wife of my nephew recently miscarried at the end of her first trimester. When I heard it, I just threw up my hands. Why, I wondered, does it always seem that the couples who have trouble conceiving are the ones who lose the pregnancy? I can think of hardly anything appropriate to say to them.

After years of seeing various types of pregnancy and newborn loss, I have decided that there are really no good words of comfort at such a time. The loss is so final, so absolute, so irrevocable, that only time can lessen the wound and even then often not completely heal it. We can express our condolences to the family and offer to do anything we can for them, but beyond that we seem relatively powerless. Although it's true that a miscarriage may have occurred because the baby was defective, that's hardly of much comfort and might only bring up a worse feeling. The religious may take comfort in the thought and words that it's God's will, but in the acute stage of death and separation that, too, is of only limited help.

Such scenes of loss are also a reminder to me of how huge a thing it is when a child dies. I frequently write in this blog about decisions regarding resuscitation of very premature babies. We realize what an enormous sadness it can be to save a child who then suffers through life, but we can never forget either the enormity of a death. It, too, affects parents forever.

If I never see again the universal sign of grief of a mother or father stretched out over an incubator, their head laying sideways on it with despair on their face as they grieve their lost newborn, it will be okay with me. But I'm sure I will, and I'm sure I will again feel at such a loss for something right to say. We will offer words and gestures of support, but they will seem simply too small.

Prejudice

Racial prejudice is a touchy subject, but that's never stopped me in the past from discussing something, so why should it now?

I speak specifically of Isaiah Washington, the black actor whose contract for Grey's Anatomy was not renewed. Several months ago Washington used a slur to describe a gay castmate, T.R.Knight; presumably, he called him a faggot. He apparently repeated this slur at an awards show. Subsequently Washington apologized to Knight and even, in a somewhat bizarre twist, entered rehab to cure himself of this. (Of what? His homophobia? His prejudice against gays? Or just his inability to stop putting his foot in his mouth?)

Alas, it was to no avail, and at the end of the season Washington was canned. Miffed, Washington blamed his dismissal on racial discrimination - I'm guessing that the producers who fired him are not black - and here's where I don't quite get it. Racial prejudice? Has he forgotten what he called his castmate? Has he paused to consider that if another actor had called him a racial slur, the n-word, the actor would have likely been immediately fired? Does he think that prejudice against gays is less reprehensible than prejudice against someone based on their skin color?

Don't get me wrong. I know that racial prejudice is alive and well in America. You'd have to be blind and deaf and, frankly, dumb to think it didn't exist. But I just don't see it here, and it seems to me that when racial prejudice is claimed when it doesn't exist, it just hurts the cause rather than helps it.

I realize that, since I'm not black, I might have no business deciding when racial discrimination exists and when it does not. Maybe I'm missing something here, and if so, I'd be glad to have someone point it out to me.

Yes II

Whenever I talk about resuscitation of extremely preterm children, as I did in my most recent post, a couple of issues keep coming up in the comments.

One issue is the thought that when deciding on what to do with a, say, 23 weeker, we should look at the baby and see how he is doing before deciding on resuscitation. If he's active or crying, then go for it, and don't if he's not. As one commenter put it, we should look at his "will to live." It sounds nice, but there' s a problem with it: how a 23 to 24 weeker does in the delivery room has little bearing on their eventual outcome. Kids who look great might end up severely impaired and vice versa. In fact, even kids who need CPR in the delivery room don't necessarily do worse than the others.

A variant on the above is to see how the baby does in the first couple of days and stop heroic support if the baby is doing poorly. I agree that we should always be reassessing the baby's chances and discussing them with the parents, but there are a few practical problems with this. If the baby has a massive intracranial hemorrhage, then it can make it relatively easy, although still heart wrenching for the parents, to stop support. But even kids who have a normal head ultrasound at age two or three days can end up in the severely disabled group. It's just hard to predict. Also, although ethically stopping life support is equivalent to not starting it, parents don't always see it that way. It's probably easier for them to not start it than to stop it.

Another issue has to do with whether Scandinavian results can be extrapolated to America. Put another way, as one commenter did, you should see what your local results are and discuss those with the parents. Excellent points, but again things get a little sticky. The problem is that one of the factors most important in outcomes is socioeconomic status. Premies from homes of educated parents do better on intelligence testing and so on than premies from other homes, presumably because there is more stimulation offered to the child, more books read to them and so on.

So, if we're saying that groups with worse long term outcomes - a higher chance of disability - should perhaps not be resuscitated, then we're getting pretty close to saying that kids from lower socioeconomic groups are less deserving of resuscitation. And that's just a small step away from saying that poor black kids are less deserving of resuscitation, and I don't even want to get close to saying that.

Discrimination is a problem that's almost inherent when we use quality of life to guide us in our decisions to resuscitate or not. Usually it's discrimination against the handicapped that is mentioned, but I think that discrimination on a racial or socioeconomic basis can occur as well, and personally, I would really like to avoid that.

Yes

I've written many posts in the past about outcomes of babies born extremely preterm, and there have been some heated debates about these outcomes. Are they good enough? Are we giving parents adequate and honest information? Are we justified in resuscitating extremely preterm kids, or vice versa, in not doing so?

Two articles in the July issue of Pediatrics address the issue, and they are, I think, for the most part reassuring to those of us who routinely resuscitate extremely premature babies.

Both articles are from Sweden. One of them looks at how preterm infants born in 1973 to 1979 are doing at the age of 23 to 29 years. Not surprisingly, the more preterm you are the greater your chances of having a disability. However, the percentage of people born at 24 to 28 weeks with disabilities was only 13.2%, and only 18% of them live with their parents. Sure, there's still room for improvement, but it's good to see that the large majority of 24 to 28 weekers were reasonably functioning adults.

The second study examined mental health and social competencies of 10 to 12 year old children born at 23 to 25 weeks gestation. Again, to some degree it's a good news/bad news report. On the one hand, the extremely preterm born children were more likely to have problems with anxiety, depression, attention, thought, and social problems, and more that one-half were experiencing school problems. On the other hand, though, 85% of them were attending mainstream schools, and the majority were not having major adjustment difficulties.

I find these studies reassuring and am especially glad to have them in light of the Epicure study, a study done in the 1990's in Great Britain of 23 to 25 weekers that, frankly, demonstrated pretty crummy outcomes. There are many of us neonatologists who believe that the Epicure results are not truly representative of outcomes of most 23 to 25 weekers, and these Swedish studies provide data to support that belief.

This hardly, of course, ends the discussion about resuscitating these kids, but perhaps it will help some people understand why I feel a little funny if I don't resuscitate a 23 weeker.

Greetings

I dialed the phone number to give the mom some news about her baby. An answering machine clicked on: "Hi. This is me. If you don't know who me is, then maybe you shouldn't be calling."

Okay.... that was friendly.

Another time I dialed a mom and, after what seemed like an interminable time of nearly indecipherable music, got this message: "I'm not home right now, but if you leave your number, I'll try to return your call at my earliest convenience, not yours. Let it be what it be, let it do what it do." Although I guess I expect her to return the call at her convenience and not mine, it seemed sort of unnecessary and rude to point that out in the answering machine message.

Yet another time I received an answering machine greeting from a mom who curtly said that "if she thought it important enough," she would return my call.

What is it with these in your face answering machine greetings? I don't really get it. Why do they find it amusing or a good idea to tick someone off with their messages?

I wonder what kind of sociopathology these moms were raised with to cause them to find such greetings acceptable. In other words, didn't their mothers teach them any phone manners? And even if their mothers didn't teach them such niceties of life, it seems it wouldn't take long for someone to figure out that in this department, you catch more flies with honey than with vinegar.

Is this yet another example of the differences between my subculture and that of the parents of my patients, or is this just an exception of a few cranky mothers? I don't know, but I don't like it.