Fragile

"Mary" was another of our tiny extremely premature neonates, one those babies who make up a small percentage of our admissions, make up a larger percentage of our patient days and an even larger percentage of our time and worries. She had bronchopulmonary dysplasia, the chronic lung disease that many of the tiny babies get, and had been on a ventilator for about six weeks. She wasn't out of the woods yet, but I thought that maybe, just maybe, she was turning the corner and starting to get better.

Then one morning I came to work and she wasn't there. The neonatologist on during the night said that he was called to her bedside in the wee hours of the morning because she was doing poorly and that by the time he arrived from the call room the baby was already dead. They tried resuscitating her, but to no avail.

What happened to her isn't clear. One of our NICU nurses had called in sick that night. A "pool" nurse, one from a nursing agency, was called in to take her place. Normally we wouldn't assign a pool nurse to a patient like Mary, a sick patient on a ventilator, because the pool nurses don't know the patients and might not be as confident in their NICU skills. It's hard to find good pool nurses. But staffing was short, we had other sick babies, and she had to do her part. About all we heard was that she was working with the baby, the baby went bad, and then couldn't be resuscitated. The baby also had some air filled blebs on her skin called subcutaneous emphysema.

Piecing things together, I suspect what happened is that the baby may have been "bagged" - given breaths with a ventilating bag - too hard, that is, given too big a breath for her lungs. I think she had a collapsed lung from that and it was too much for her to handle. If one of our own nurses had been taking care of her, one who knew her and knew how to bag properly, that baby might still be here. If a nurse hadn't called in sick, the baby might still be alive. I can't prove it and can't do much about it, except urge our nursing managers to keep us well staffed, but I'm not the only one who thinks that baby would be living if one our own nurses had been taking care of her that night.

Life is fragile, especially in an NICU. But it shouldn't be dependent on whether someone calls in sick or not.

P.S. I'm going to a conference in San Francisco for the next three days. I hope to have some internet access there and post a post in 2 days, but if I can't, I'll post when I get back.

Hassle

I just got paged from the main administration office. "Hello?"
A snippy voice said "You haven't come by and signed that letter yet."
"What letter? Was I told about this before?"
"I paged you last week about it.''
"I was on vacation last week."
"Oh." Her snippiness lessened when she realized this was the first I was hearing of the letter, but she still seemed a little annoyed.

Not long ago a nurse relayed a message to me. "The pharmacy wants you to know that they are out of vitamins for the parenteral (IV) nutrition. Is it okay if they make it without the vitamins?" Well, no, it's not okay, but do I have any choice in the matter? This came a day after I found out that we had run out of yellow nipples for baby bottles. (There are yellow nipples for full term babies and red ones for premies.) How can a nursery run out of nipples? On that same day they told me we didn't have any more kits for hook ups to the breast pump, meaning that mothers of our premies couldn't pump their breast milk here. Fortunately, they found those about an hour later. We weren't out of them. It's just that nobody could find them.

Later that day I showed up in the classroom, ready to give my scheduled noon lecture to the residents and students. The second Thursday of the month is neonatology lecture day - except for this second Thursday, because without notifying neonatology, they had given the lecture slot to someone else. I don't mind not having to give a lecture, but couldn't they notify me before I had prepared it? Finally, I went to back to my office to find a voice mail from the director of medical education, chewing me out for missing my scheduled Wednesday morning lecture. Huh? I had never been asked to give a Wednesday morning lecture.

As you can see, sometimes parts of our hospital don't work so well, and it can get very frustrating. TIME magazine has an article this week about what doctors hate about hospitals, and it's mainly about medical errors and mishaps. I don't like those, either, of course, but what I hate about a hospital is when it is so inefficient it makes it a hassle to do your regular job. I don't mind tough medical problems. We expect those. It's the problems like lost blood samples, or test reports that take forever to come back, or scheduling screw ups, or - a problem particularly bad in our hospital - running out of supplies, that drive me crazy.

What do doctors want from a hospital? The ability to practice medicine with as little extraneous bother as possible. I suspect patients would like their doctors to be able to do that too.

Unwanted

The baby was very tiny and immature. After eight days of life, not only were her lungs in bad shape but her liver and kidneys were failing too. My partners and I met to discuss whether ongoing treatment was futile, whether we were prolonging suffering; whether we should take the baby off the ventilator and allow her to die.

The mother of this baby was a black drug addict, who I think was homeless, and certainly had little to no social support. She rarely, if ever, visited. As we discussed what to do with the baby, one of my partners, to my surprise, said that he thought that one of the factors in our decision should be the baby's social status. The baby was, in effect, unwanted. That made it easier, said my partner, to let the baby die, easier than if the baby had loving, caring parents who really wanted the baby.

I was a bit flabbergasted by that remark. (I was also a bit puzzled, since that remark was out of character for my partner; he is a fine and empathetic neonatologist.) I thought that all babies had an inherent self worth, regardless of the parents' social standing. If we let social standing influence these decisions, the potential for discrimination was great. Would factors like race or gender influence our decisions, even though none of us thought we were racist or sexist? Would a family's income affect us? Would we think that babies with wealthier parents were more wanted?

Although I disagreed with my partner - and still do - he had a point, sadly, about the child being unwanted. This child, if she lived, would have almost certainly gone into foster care, where many of the babies bounce from home to home until they reach age 18 and are left to fend for themselves. Black babies born to drug addicted moms are not prime candidates for permanent adoption, and home life with her biologic mom was pretty much out of the question.

We ended up recommending to the mother that life support be removed. She agreed, we did so, and the baby died. I was on service, so the final call was mine, and I can assure you that we removed the ventilator because further treatment was futile, not because of the baby's social standing. The mother came in when her baby died and genuinely wept and grieved for her. Unplanned for with no place to go? Maybe. Unwanted? I don't think so.

P.S. A new Grand Rounds, version 2:31, is up at the Health Business Blog.

P.P.S. Check out the first edition of Pediatric Grand Rounds at Unintelligent Design.

Taps

We recently had a baby in our NICU that had four spinal taps in 10 days. That's a lot. If the first tap had been successful there would have only been the need for one or two taps.

The baby's mother had syphilis shortly before she delivered. The baby needed treatment with antibiotics for at least 10 days to ensure she didn't get syphilis, but we needed to be sure the baby didn't have syphilis in the brain, so my partner, appropriately, did a spinal tap. Unfortunately, he only got a small amount of fluid out, enough to tell us that there were a few too many infection fighting white blood cells in the spinal fluid - which suggests possible brain infection - but not enough for a culture to show us what germ might be infecting the brain. My partner tried another spinal tap the next day. It was unsuccessful. Another partner then did a spinal tap the following day; she obtained enough fluid, but the fluid had blood in it and interpretation of the results was difficult.

We discussed the case with our infectious disease specialists and agreed to stop doing spinal taps and just treat the baby for awhile. Near the end of the antibiotic treatment, I was "on service" - doing the daily rounds in the NICU - and again consulted the infectious disease folks. They suggested a fourth spinal tap, to make certain there were no signs of meningitis. I groaned whenI heard that but did it anyway. Fortunately, this time we had a clean, bountiful tap and the fluid showed no signs of infection.

I suspect that many of the non- physician readers of this blog are perhaps concerned or annoyed by this plethora of spinal taps. Trust me , we weren't very happy about it either. It's one of those situations in medicine, though, where in spite of everyone's best efforts, unfortunate things happen. My partners who did the initial spinal taps are very good at doing them; in fact, they're the procedure king and queen of our NICU. But the taps just didn't go well in this baby. I would have hated it if this happened to my own baby, but even though this much trouble with spinal taps is unusual, I don't know how to guarantee it won't happen again. It's an imperfect world - a lousy, but true, excuse.

Push

"Push," the obstetrician said, "PUSH!"

He was concerned because the baby's heart rate was dropping a bit and mother was not pushing effectively. The OB resident and the nurse in the room began calling "push", too. Pretty soon another nurse chimed in, and then the mother of the laboring woman. Soon there was a cacophony of shouts and accents, all exhorting the mother to "PUSH!"

It can get a little out of hand sometimes. There can be so many people yelling at the pregnant woman - in addition to the omnipresent TV - that she must not know who to listen to. The mingled shouts, I sometimes wonder, might confuse her more than instruct her. Sometimes I'll say, a bit sarcastically, to the NICU nurse with me as we wait to take care of the baby, "Do you think she'd push better if we started yelling push, too?"

I really prefer the way the midwives approach this aspect of delivery, the time when exhortation to push is needed. The midwives usually have a calmer atmosphere, and generally are the only person instructing the patient. The nurses in the room take their cues from the midwife's manner and don't raise their voices either. In the defense of the obstetricians, though, the midwives typically have low risk deliveries where the need to get the baby out might not be as urgent; also, there are are fewer people at a midwife's delivery, since the residents and medical students are not there. And, of course, some obstetricians take the quiet approach, too.

I think of this because of the recent delivery of Katie Holmes (congratulations, Tomkat!) and the discussion of silent deliveries that the Scientology church espouses. I think the Scientologists think it is better for the baby if there is silence. It may be preferable to have a quiet room, but anyone who takes care of neonates knows that they are so incredibly resilient that a little noise isn't going to do them much harm. For the mother, though, silence might be golden, or at least preferable to a chorus of "push."

P.S. Please welcome to the blogosphere Tales from the Womb, a new blog written by a frequent commenter on my blog, the neonatologist who signs himself Cherubsinthelandoflucifer.

Single

In comments to my "Subculture" post of a few days ago, la luba - a single mother herself - passionately defends single mothers and asks us to support them. Since I 've written about single mothers before, I thought I'd take this chance to explain some more of my thoughts about them, and also address some of la luba's points.

For starters, I agree completely that we should do everything possible to support single mothers. It is harder raising a child as a single parent. I also agree that children raised in single parent households can turn out fine. For that matter, I was raised in a single parent (mother) household from the age of 7 years on and think I turned out okay (no comments from the peanut gallery about that, please). I also don't want to force women to stay with men who are bad for or to them simply to avoid being a single parent.

On the other hand, I don't think we can just flippantly say that single parenthood is just as desirable as, for lack of a better word, double parenthood. The influence of a father who is there for his child is a good thing. Also, look at the comments from neon88 to the same post. He writes that 60% of the births in his hospital are out of wedlock. A father has two babies in the hospital at the same time with different mothers. An 18 year old mother has three kids by different fathers. Like many neonatologists, I have seen the same things. The only difference is that in our hospital more than 90% of the births are out of wedlock, and in at least half of them there is no real relationship between father and mother. The disconnect between marriage and parenthood, even the disconnect between a long term relationship and parenthood, is complete in this subculture.

We should not discriminate against single parents and their kids after they are born. However, I think people would do well to try a little harder to prevent single parenthood by doing two things. One, be a little careful about people with whom you sleep. If they aren't someone who you would like as a parent to your child, think twice. Two, especially if you are not going to do number one, use effective birth control. It's not that hard; it's the responsible thing to do. And don't accuse me of being sexist; I think men should do this as much as women.

Like most NICU staff, I love the babies I take care of and only want the best for them. Should we treat them worse if they have a single parent? Absolutely not. But should we do everything to optimize the environment they are raised in - which includes advocating for responsible, "double " parenthood? Absolutely.

P.S. Visit Fat Doctor for grand rounds this week.

Home

The baby was full-term but he needed a ventilator to breathe. He had been deprived of oxygen during the birth process and suffered perinatal asphxia. He suffered it bad. His kidneys didn't work, his heart wasn't so good either, he had seizures until he became comatose, and eventually his brain got so bad that there were barely any brain waves. After discussing it with his parents, we removed the baby from the ventilator and he died.

This baby was the result of an attempted home delivery. An uncertified midwife kept the mother at home far too long, having mother push and push, trying to keep her from having to go to a hospital with it's too technical and "unnatural" approach to birth, where, heaven forbid, they might actually try to monitor the baby's condition during labor and intervene if it were necessary. By the time she did finally go to a hospital and deliver, the baby was a goner. He was a fine baby. If it hadn't been a screwed up delivery, he'd probably be playing ball with his dad now.

I knew that sooner or later I would write about home deliveries. I do it now because a commenter on a recent post of mine (CDMR) said that after she had a caesarean section she had her next two deliveries at home. In a nutshell, I hate home deliveries.

I think that most people who have a home delivery do it because they want a better "childbirth experience". I ask such people, why are you having a baby? What is the purpose of this pregnancy? If it's to have a good experience, skip the pregnancy and go out for dinner and a movie instead. But if it's to have a helathy child, go to a hospital and take advantage of the modern world. It wasn't that long ago that many women and babies died in childbirth. A lot can go wrong. Ten per cent of babies need some type of resuscitation at birth. A good childbirth experience won't make up for the loss of a child. (By the way, this is not a rant against midwives. I have nothing against them, as long as they are certified and deliver babies in the hospital.)

The baby I write about here is not, unfortunately, the only baby I have seen die because of a home delivery. Pregnant and in labor? Go to a hospital.

Subculture

Two days ago I sent home a baby born at 26 weeks gestation whose birthweight was small even for a 26 weeker. The baby looked great when she went home. She had had no bleeding into her brain, her muscle tone and activity were good, and she looked like she might be one off those extremely premature babies who turns out fine.

Mom was nearly ecstatic. She was the type of woman that every obstetrician and neonatologist has seen, a woman who just can't seem to have full term children. Her first pregnancy ended with a miscarriage. Her second pregnancy ended with a stillbirth at 28 weeks gestation, and now this pregnancy ended at 26 weeks with a tiny baby who didn't grow very well inside her. I remember her speaking to me about this, about her discouragement and fear that she would never be able to have a baby. I sympathized with her frustration; fortunately, having normal babies was never a problem for me, but I can imagine the heartache that it must be, since the ability to have and raise children is such an integral part of our being. As I mentioned, we see women like this fairly often, women who have the burden of either difficulty conceiving or difficulty carrying a child to a viable gestation.

There was one thing different about this mother of the 26 weeker, though, something that made it a little harder for me to drum up the usual sympathy. She was 20 years old and single.

When she spoke to me about her problems with pregnancies, it once again pointed out to me how different the subculture she lived in was from mine. Worrying about carrying pregnancies at age 20? A 20 year old single woman has no business getting pregnant, not even once, let alone three times by that age. Once again, my compassion was mixed with a good dose of frustration. We humans can be so similar, yet so far apart.

Talk

We had a new baby born at 24 weeks yesterday. Mother came in and shortly after arrival had an emergency caesarean section, so we were not able to talk to her before delivery. In the afternoon, after the baby had stabilized a bit, and mother had time to awaken from her anesthetic, I went to her room to give her"the talk". She had a few relatives with her at the time. I asked her if it was okay to speak in front of them, and she said yes.

I told her that her baby was born 15 to 16 weeks early and that every organ, every system of his body was immature. The system that first gets our attention is the lungs; we had to put her baby on a ventilator, and he would likely be on it for weeks to months. I told her about the honeymoon period, how the baby's lungs might improve the first few days, but at the end of the first week worsen. We talked about the baby's immature stomach and intestines, and that it would likely be three to five weeks before he was on full feedings and we could get the IV out. I told her about the immature brain and the chance of bleeding into the brain. Fortunately, the majority of babies even this premature don't have major bleeds, but it's still a significant risk. We discussed the immature eyes, the possibility of blindness, and the increased chances of his needing glasses. We talked about the increased risk of infection in these tiny babies with decreased defenses.

Finally, I told her the chances of survival at 24 weeks is about 57%, perhaps a little better for her son because he had already made it a few hours. Since some of our parents don't understand percentages, I explained that meant a little more than one of every two survives. If the baby survived, he had a 25% to 50% chance of having a significant handicap.

I didn't tell mother about the desaturation episodes that would frequently occur - times when the baby's blood oxygen level falls spontaneously or with the slightest amount of handling. I didn't tell her about the worries she would have over big and little things; about the good days and bad days he would have; about the bother that pumping her breasts would be when she wanted just to nurse a normal baby; about the unknowns there would be of his condition; but most of all, about the huge emotional roller coaster that her life would be the next three months. Even if I did tell her, though, I'm not sure she could really grasp the meaning of it until she experienced it.

At the beginning of our conversation, Mom had seemed a little on edge. By the end of it, she was weeping, and I was glad her relatives were there for support. Like most people, I don't like making people cry, but I guess it's a trade-off for being honest with them.

CDMR

In comments to a recent post of mine Dream Mom opined that every pregnant woman wants two things: one, to have natural (vaginal) delivery, and two, to have her baby go home with her from the hospital. There was a time when I would have readily agreed with that, but lately I have to question how true the first wish is because there is a small, but perhaps growing, number of women choosing to deliver by caesarean section on maternal request (CDMR). This refers to caesarean delivery for a singleton pregnancy upon maternal request at term in the absence of any medical or obstetrical indications. In other words, a mother says, I don't want to go through labor, just give me a caesarean section.

When I first heard about CDMR, I thought this is crazy, do obstetricians really agree to this? Apparently some of them do, and they do it often enough that the National Institutes of Health saw fit to recently convene a group of experts to assess the state of current knowledge about CDMR. The result of that conference is a "State-of-the-science conference statement". In short, the experts said that there is really not enough evidence to recommend for or against CDMR.

Post partum hemorrhage, subsequent urinary incontinence, and surgical and traumatic complications might be less in women with CDMR versus women who have vaginal deliveries or unplanned caesarean sections. On the other hand, women with CDMR have longer stays in the hospital and might have more infections and more anesthetic complications, and breastfeed less. Babies born by CDMR have a higher chance of respiratory problems after birth, but might have less of a chance of birth injury and infection. Again, there is not enough data to adequately evaluate the good versus bad of CDMR.

My gut reaction to CDMR is that it can't be good to subvert Mother Nature's wishes regarding childbirth. As a person who believes in the value of scientific inquiry, though, I'm willing to wait for more information on the subject. I fear, though, that if CDMR becomes more accepted then some women will choose it based on fear of delivery, a fear that might be informed by less than reliable sources, such as baby showers and "horror" tales from "friends" about vaginal delivery. The amount of medical misinformation out there is amazing. I don't mean to trivialize the fear, though. Let's face it, the thought that a human being, even a small one, can emerge from an opening the size of the vagina is a bit daunting. But the pain of vaginal delivery can be dealt with, and all mothers should make their decisions based on real information, not scary stories.

I'm curious to see how this works out.

Legal

I took a foray from medicine the last two days into the legal world. A former employee of our hospital, not happy that he was changed from employee to ex-employee a few years ago, did a typical American thing: he filed a lawsuit. The problem is that he doesn't have a case, and I'm not saying that just because I work for the hospital; he really has no basis for his allegations.The two sides agreed to have the claim settled by binding arbitration, which is a hearing like a trial, only less formal and in front of an arbitrator instead of a jury. Since I was involved in the decision that made him an ex-employee, I was present for the hearing. I find the law interesting and was curious to see how it all worked.

Unfortunately, I found the legal world, or at least this part of it, a little distasteful. Our attorney was trying to trip up the plaintiff and make him look bad, and the plaintiff's attorney was trying to do the same to the hospital and its witnesses. What a way to live, trying to make people look bad. Our hospital has spent $30,000 to $40,000 on legal fees so far, and the plaintiff's attorney has racked up about $50,000 in charges and expenses, all for a case without any merit. No product has been made, and really no service rendered. It's a colossal waste of human effort.

It was almost surreal. Nobody seemed to want to hear the whole story. Both attorneys just wanted answers to their questions, no more, no less, and whether the whole truth came out or not didn't seem to matter.

This post is not meant as a broadside against the whole legal profession. I know that lawyers are necessary for our system of justice and that in many cases they do a great service for people. In this case, though, our legal system looked tawdry. I had to work in the hospital the evening after the second day of the hearing, and it was almost nice to have to work, to be out of the legal world. I was glad to be back on my own turf.

Primal

The 20 year old mother of the full term baby seemed pretty calm at first.

"Your baby has jaundice," I explained. I went into my typical spiel about jaundice, explaining what caused it and telling her it was unlikely to be a serious problem for her baby. I went on to talk about phototherapy, how we treat the jaundice by shining light on the baby. Her eyes began to moisten.

"The lights won't hurt him", I said quickly, trying to reassure her and keep her from crying. "He'll only need to be under the lights for one or two days probably."

Tears welled up in her eyes, filling her lower lids. "You mean he won't be able to come home with me?" she asked.

"No," I replied, "he has to stay here for the light treatment."

That did it. The floodgates opened and tears streamed down her face. She was scheduled to go home that day, and the idea of going home without her baby was too much to bear. This is a common reaction. Even if a baby is not very sick, even if you assure them the baby will be fine, there is something about being pregnant for nine months and then going home empty handed that really hits the wrong emotional button in a woman. I shouldn't be surprised by this, of course, but I'm embarrassed to admit how long it took me to figure it out. It shows how strong the natural maternal-baby bond is; it is inherent, instinctive, almost primal.

As neonatologists, we see a lot of very sick babies. Babies with just jaundice who need to be hospitalized only an extra day or two seem pretty lucky to us compared to our other patients. But that is small comfort to a mom heading home without her child.

Fortunately this baby was able to go home the next day. Unfortunately, he needed to be readmitted the following day for more phototherapy because his jaundice level shot back up too high. When mother heard that her baby needed to be readmitted, she really unloaded on my partner, saying some pretty unkind things in her frustration. A day and a half later, when the baby could go home again, I was lucky enough to be on duty, and mom was all smiles and thank yous. People like you a lot better when you give them good news rather than bad.

Steroids

What would you do in this situation? Your premature baby is very sick and might die. You can let the doctors give a medicine that will probably increase the baby's chance of surviving, but will also probably increase the baby's chance of having cerebral palsy. Do you give the medicine, or do you take your chances without it in the hope that if he survives he'll have a lesser risk of cerebral palsy?

It's a tough decision, one that comes up periodically in the NICU. Very premature babies often develop bronchopulmonary dysplasia (BPD), a progressive disease of the lungs that interferes with their ability to take in oxygen and get rid of carbon dioxide. In many children it peaks in severity at a few weeks of age and then gradually improves. It's a bad disease; many premature babies are on a ventilator for several weeks with it, and some die from it.

In the late 1980's and early 1990's studies showed improvement in BPD in babies treated with dexamethasone, a type of steroid. (Don't confuse this with the kind of steroids baseball players use. Rather than bulking you up, dexamethasone makes it harder for a baby to grow.) NICU's all over the country started using steroids liberally to treat BPD. Unfortunately, by the late 1990's, follow up studies had shown that babies treated with steroids had a higher risk of developing cerebral palsy than those not treated with them, and steroid use for BPD plummeted. In 2002 the Fetus and Newborn Committee of the American Academy of Pediatrics recommended that steroids be used for BPD only in "exceptional circumstances", although the committee did not define those circumstances. In our NICU, we use steroids for BPD very sparingly, reserving them for babies we think will likely die of BPD if not treated with steroids. Before giving steroids, we discuss them at length with the parents, telling them the risks and benefits, and asking their permission before using them.

Tonight when I came to work my partner was discussing steroid use with a 19 year old mother of a baby with severe BPD. After my partner signed out to me, I sat down with her and again explained it, trying to make sure mother understood. It's a pretty big decision for a 19 year old, and I feel a little sorry for her. Shortly after my arrival tonight I had seen her on my way to the cafeteria, flirting with a security guard, a pretty normal activity for a woman her age (although it seemed a little paradoxical, since she had just given birth three weeks ago.) A few minutes later we were talking about her baby's chances of death and cerebral palsy.

I'll have to live with the results of the steroid decision until the baby goes home; she'll have to live with it all her life.

P.S. A very creative new Grand Rounds is up at Urostream.

Tag

I have been tagged by Flea. Yikes! It's an honor to be chosen....I think. Allow me to depart from the usual neonatal doc format and play tag for a day.

Four jobs I have had in my life:

1. Neonatologist
2. General pediatrician
3. Orderly/nurse's aide
4. Farmhand on a produce farm

Four movies I could watch over and over:

1. Crouching Tiger, Hidden Dragon. Magnificent. "I want to be with you in the desert."
2. What's Up, Doc? Keep an eye on the plaid suitcases.
3. While You Were Sleeping. Awww. Sandra Bullock and Bill Pullman are so cute together.
4. Pride and Prejudice (2005 version). Kiera Knightley makes a great Lizzy.

Four websites I visit regularly:

1. Comcast.net. My home page.
2. Napster. Now that it's legal.
3. Tracksy.com. What can I say? The egotistical part of me wants to know how many hits I'm getting.
4. Blogger.com. For obvious reasons. I would like to read other websites and blogs more, but the truth is that by the time I'm done writing posts and answering comments, I don't have much time for more cyberspace activities.

Four of my favorite foods:

1. Ice cream with caramel sauce.
2. Ice cream with hot fudge.
3. Ice cream with strawberries.
4. Did I mention I like ice cream?

Four places I would rather be right now:

1. Sleeping Bear Dunes National Lakeshore. If you've been there, you'll know why I choose it.
2. Swimming in any of the Great Lakes, on a warm summer's day.
3. Any place I can spend time with, play with, and enjoy my kids.
4. Right here. I like my home.

Four most wonderful places I have been.

1. Sleeping Bear Dunes National Lakeshore. Go there. You'll see why.
2. Zugspitze, in the German Alps.
3. Highway 1, California.
4. A Blue Man group show. I caught their act in Chicago - great entertainment.

Four books I could read over and over:

1. The Remains of the Day -Kazuo Ishiguro. A wonderfully subtle story of regret.
2. Life of Pi - Yann Martel. The best ending of any book ever.
3. To Kill a Mockingbird - Harper Lee. Hey, Boo.
4. Any of the Rumpole of the Bailey Omnibuses - John Mortimer. I not only could, I do read these over and over.

Four songs I could listen to over and over: Only four?

1. A Case of You - Joni Mitchell
2. Tell Me on a Sunday - Andrew Lloyd Webber, especially the version sung by Sarah Brightman
3. Dance Away - Roxy Music
4. Just about any of the choruses from Handel's Messiah

Four reasons I blog:

1. I like to write and see how the words come out.
2. I get a kick out of knowing that people all over the world might read my stuff.
3. It's mental weight lifting and keeps my mind off more depressing things.
4. I didn't realize this when I started blogging, but I really like seeing the comments and hearing from so many interesting people.

Four people to tag:

Hmmm. Flea, Fat Doctor and Barbados Butterfly have already been tagged....

1. Geek Nurse - I know you're shut down, but can you come out of hibernation for a friendly game? Maybe under a different name? Send us a sign.
2. Dream Mom - Come on out and play, girl.
3. Blogborygmi - Let's see what the master of Grand Rounds has to say for himself, especially after his wicked April fool's day post.
4. Judy at Tiggers Don't Jump - Hey, she's a NICU nurse.

For my next post, it's back to our regularly scheduled programming.

Siamese II

There are so many thoughtful, excellent comments to my previous post (Siamese, March 30), that I thought it best to answer in a new post rather than the comments section. Several people asked, rightly, for more information. I can give a little more, but this happened a long time ago, in the late 80's, and frankly I don't remember everything. It was certainly our policy and practice at the time (and still is) to discuss these situations with parents, before delivery if possible, otherwise after delivery, but for the life of me, I cannot remember these parents. I'm sure that I or a partner would have discussed this with them prenatally if given the opportunity.

For purposes of discussion, let's divide babies born with anomalies into three categories:
1. Babies whose anomalies are so mild that there is no question they should be resuscitated. An example might be a baby with gastrischisis (intestines outside the body) but no other problems, or a baby with Down syndrome.
2. Babies with anomalies that are such that it makes it questionable whether to resuscitate them or not. I think most would agree that physicians and parents alike should participate, if possible, in the decision to resuscitate.
3. Babies with anomalies so severe that they clearly should not be resuscitated. This implies that the anomalies are bad enough that treatment would be futile or prolong suffering. An example would be a baby with anencephally (no skull or brain). Personally, I would include babies with Trisomy 13 or 18 in this category.

These conjoined twins were either in category two or three. We knew before delivery that they were conjoined but weren't sure how bad they would be. Again, I don't remember how the pre- delivery discussion with the parents went, but please realize that, although theoretically a joint parental/physician decision should be made, in practice that can be very difficult. There might not be time prenatally to have a full discussion. Even if there is, through no fault of anybody, it can be extremely difficult for parents to grasp the situation. Every thing about the case is new or foreign to them, and they are not used to even discussing these life or death issues, let alone deciding them. Also, information is often incomplete.

In the case of these twins, I do not recall a clear directive from the parents either way, plus we did not have enough information before birth to fully know the extent of the defects. So, immediately after birth, I had a choice: do nothing; resuscitate and do everything possible for these babies; or resuscitate and then discuss it with the parents, knowing that we could withdraw life support if we decided to later on. (Ethically, withdrawing life support and not starting it are considered equivalent. Practically, parents don't always see it that way.) If I thought the twins fit into category two (of the categories in the second paragraph), the right choice would be the last one, resuscitate and discuss later. If I thought the twins fit into category three, then the right choice would be to leave them alone.

I had to make a quick decision about the babies' category. Bear in mind that I probably couldn't have intubated them (put a breathing tube into their windpipes) even if I wanted to because of their chin and partial face fusion. Bear in mind that they were conjoined from the face to a long way down the torso. Bear in mind that they were 13 weeks premature before the era of artificial surfactant, and even if they were not conjoined and had no anomalies the chance of both surviving would have been less than 50%. Bear in mind that a picture of these twins - not available - would be worth at least a thousand words to those curious about, and perhaps second guessing, my decision.

I decided they were category three, did not resuscitate them, and did not really lose any sleep over the decision. I don't say that pompously or because I take the decision lightly. It's just that based on my experience and knowledge base, they fit that category. And like it or not, for better or for worse, it's part of a neonatologist's job to make those kinds of decisions.

We could talk about this a long time, but I've already exceeded my preferred post length of three to five paragraphs. Thanks to everyone for your past, and perhaps future, comments.