Blue

I listened to the pulsating, percussive music of the Blue Man group as they pounded on xylophone-like instruments. Each key was attached to a tube of a different length and when struck with a paddle gave out a sort of melodic thunking tone. When matched with the expressionless antics of the Blue Men, it was pure entertainment, entertainment only for the sake of itself, and I was thoroughly enjoying it.

In the midst of it, though, somehow my mind pulled me back to two days earlier and a 23 weeker in the NICU. He weighed barely more than 500 grams and was trying to die. After one and a half days of efforts by my partners and me, I was willing to let him succeed at it. We had tried everything. On the oscillator ventilator, his pH, a measure of the amount of acid in the blood, was less than 7.0, a level incompatible with life if it continued for long. I switched him to a conventional ventilator, thinking he couldn't do worse on it. I was wrong.

Mother, though, wasn't ready to have him die. Eighteen and single, she was terrified and trying her best to deny the situation. I gently suggested she come to the NICU and hold her baby, telling her that many mothers regret it later if they don't take the opportunity to do so. I also suggested that we might want to take him off the ventilator and have him in a private room with her while he died. The thought of it - the entire situation, really - was more than she could bear. At one point in our conversation, without saying a word she picked up the phone and dialed it. She spoke a few words into it and then handed it to me. " Who is this," I asked before taking the phone. "My granny," she replied.

Many people in the comments section of this blog have written about rights of parents and how they should be kept informed and given options about their babies' care. I agree. I like it when parents are interested and knowledgeable, or at least make an attempt to be. But we must also acknowledge that some parents are unable or unwilling to be their child's advocate, too scared or immature or somehow psychologically or emotionally incapable of doing the right thing. Who, then, should be the baby's advocate? We can quibble about who it should be, but in reality it is me.

Late in the afternoon mom came around and held her baby a good long while as he passed away. Her family and the baby's father came to be with her and in the end it was the best we and they could do with a bad situation. An aunt thanked me and even offered words of comfort to me, saying she knew we did everything we could.

Vibrations from a huge bass drum rocked me out of my reverie. A Blue Man was hitting the drum with the biggest beater I have ever seen. Another Blue Man was drumming on what looked like plumbing pipes, and the third Blue Man was eyeing giant rolls of toilet paper that would soon come cascading down over the crowd. The 23 weeker was out of my mind, and I was glad. It's not that I don't like my job. It's just that I like being off and having fun more.

Woof

I counted the people in the delivery room. There were the laboring woman, her sister, and her mother; the obstetrician and OB resident; the OB nurse; two medical students; one or two nursing students; and myself and the NICU nurse, all for a term baby with mild heart rate decelerations who turned out to be fine.

There was a time, not that long ago, when even fathers of the baby were not allowed into the delivery rooms. About 30 to 40 years ago hospitals gradually and begrudgingly began to allow dads in. I know one hospital that only allowed fathers into the delivery room if they were married to the mother. I don't know whether this resulted from a puritanical mindset or a desire to make the dad do right by mother. There was a time, too, when dads could only be in the delivery room if they had gone to prenatal classes. Hospitals seemed to use any excuse they could to keep family members out.

Now, though, the pendulum has swung the other way. Our hospital lets just about any one in the delivery room that the mother wants, as long as it doesn't get crowded. It's not unusual to have 3 or 4 family members in the delivery room. Personally, I don't mind this. They are usually well behaved, and it's certainly much preferable to keeping people out at all costs.

I think, though, that maybe it's time to take things to the next step: we should allow family pets in the delivery room. We wouldn't have to do it all at once. We could begin with dogs - if people are uncomfortable with the idea, perhaps we could require a puppy prenatal class initially - and proceed to cats. Eventually, if things work out, we could allow ferrets and so on in the delivery room. It may sound strange, but think what a comfort a beloved family dog or cat could be to an anxious, laboring mother.

They could be useful in another way, too. In this day and age where anyone can cut the umbilical cord - not only fathers but grandparents, friends, aunts, uncles, first cousins once removed, anyone but the obstetrician - why not let the dog do it? You wouldn't even need a scissors. The dog could bite the cord, like they do in nature. (Just don't let him get too close to the placenta or it might be gone!) Hey, a dog's mouth is cleaner than a human's.

P.S. I'm going on vacation the next five days. Look for my next post on about February 26.

Confidence

She walked into the NICU with a slow gait, her head bowed, and not making eye contact with anyone. When I began talking to her she answered in short, quiet phrases. A former heroin and methadone addict whose other children had been removed from her custody, her body language and demeanor practically screamed "I have no self confidence."

And why should she? Unemployed herself, she was walking into a room full of productive, gainfully employed people. Her mothering skills were thought to be so marginal that she had to have Protective Services check her out before she could take her baby home. Everyone in the NICU knew that, and she knew they knew it. It was no wonder she felt insecure.

As I talked to her about normal baby things - feedings, car seats, and so on - she began to open up and talk more. She seemed very nice and concerned about her baby and asked appropriate questions. I also noticed that her hair, with the coarse texture typical of many African Americans, was beautifully woven into fine braids, something that took no small amount of time and effort to do. Could this attention to her appearance be a sign that she was now going to take better care of herself and her baby?

A little later I talked to another mother, a 17 year old first time mother. Her own mother had lost custody of her long before because of incompetence, and for the last three years she had lived with her aunt and uncle. Now, though, just after delivering her baby, they had kicked her out of the home, because they had one rule: she couldn't have any kids. The uncle might have been swayed to take her back, but according to our social worker the aunt had nothing good to say about her. Protective Services was in the process of trying to find a placement where she and her baby could go together. She, too, had body language that almost said "Kick me, I have low self esteem," which is hardly a surprise, given her history.

Two mothers, both with sad histories. I couldn't help but feel a little cautious optimism about the first one, because it seemed that maybe, just maybe, she had put her problems behind her. But the second one was just discouraging. With role models like hers, it would take a near miracle for her and her child to turn out better than the rest of her family.

Outcomes II

I can't get off my mind some of the comments made a few weeks ago about the outcomes of very premature babies, mostly in response to my posts Outcomes and Ignored. (There's been similar discussion recently at Tales From the Womb.) Specifically, I think of the comments made by mothers of some ex-premies who had very bad outcomes. Terri w/2 has a 21 year old with severe impairments; Helen Harrison has a 31 year old with hydrocephalus, cerebral palsy, and mental retardation. Both mothers advocate that realistic evidence be given to prospective and new parents of very premature neonates and that parents have a real choice in whether to resuscitate their babies or continue treatment when the outlook is very grim. I think they believe the neonatology establishment in general is too optimistic about outcomes and too aggressive in saving tiny babies.

As someone who takes care of tiny babies for a living, my first reaction is to be defensive, but that's not really fair. I think of what it would be like to have a child with devastating impairments. It is a huge burden, not only the daily grind of their immediate care, but also the fear of what will happen when the parents are no longer there to care for them. We may be tempted to say that the parents think it's all about themselves, and their own desire for an easier life, but I believe them when they say one of the hardest things is to see their child suffer, suffer through things like endless shunt revisions or heel cord lengthenings.

The problem is that if we don't resuscitate 23 to 25 weekers in order to prevent having survivors with significant disabilities, we also let some babies die who would have been normal or survived with milder problems. The Epicure study, recently discussed on Ex Utero's blog (the abstract is also reproduced there) looked at babies born in 1995 at 23 to 25 weeks gestation. At age 6 years 80% of them had some disability: 22% had severe disability, 24% moderate disability, and 34% mild disability. We can all agree there's room for improvement there.

But does that mean we shouldn't resuscitate 23 to 25 week gestation premies? It partly comes to a question of what the worth is of children with mild and moderate disabilities. For every case of severe disability you prevent by not resuscitating 23 to 25 weekers, you lose about three kids who would have had moderate or mild disabilities or been normal. For every case of severe or moderate disability you prevent, you lose one kid who would have been normal or had mild disability. I understand why people want to prevent cases of severe disability, but can you see why I'm a little uncomfortable if I don't resuscitate 25 weekers? I feel bad for the normal and mildly impaired kids who won't make it. They might not be the brightest kids in our world, and they might have a high incidence of ADHD and maybe even psychiatric problems, but they can enjoy life, and I think their lives have value.

Many will say it is the family's decision to make these kinds of trade offs, and to a large extent it is. But society has a say in it too, and there is a limit to what we let families do. For example, if a family asked me to not resuscitate a 28 weeker - who has a better than 90% chance of survival and about a 10% chance of cerebral palsy - and just let him die, I would refuse their request, and I think most of society would back me up on that. Where, then, is the boundary where I should acquiesce to the parents' request for non-intervention versus deny it?

We are usually saved from this tough decision because the fact of the matter is that very few parents ask us to not resuscitate their child. It's much more common for them to ask us to resuscitate a 21 weeker than to not resuscitate a 25 weeker, and, at least in my case, it's not because I'm sugar coating the information. But it's not surprising that most parents ask us to do everything, because it is so much easier than it is to say let my baby die. The former is almost the default decision; the latter takes a lot of gut wrenching thought and courage.

Vaporized

The Vapotherm machine was a device that allowed neonatologists to give high amounts of humidified oxygen to babies through their noses, higher than we could with any other device except CPAP. I knew that some NICU's were using it in place of CPAP, so when one of my partners said, "Hey, we should get a Vapotherm," I decided to look for studies in neonates using it.

I found none. In fact, I could find reports of its use in only about 5 neonates, and certainly no well done study assessing its safety or effectiveness. I, and others, had concerns that we might be giving too much oxygen and air flow to a baby, without knowing the consequences. At our next neonatologists' meeting we managed to nix further attempts to get a Vapotherm for our unit.

A few months later, reports about an unusual infection in neonates using the Vapotherm began to surface. Shortly afterwards, the company pulled the product and the use of the Vapotherm in neonatology vaporized. I felt relieved that we had never tried it, although it bothered me that one of my partners wanted to get it when there was so little data available about its use in newborns.

This was an example of neonatologists not using evidence based medicine. Rather than looking for well done studies that showed the safety and efficacy of the Vapotherm, too many physicians said, "Hey, that sounds like a good idea," and started using it based on that. Unfortunately, the history of neonatology is littered with examples of good ideas that turned out to be harmful: large amounts of oxygen, steroids for BPD, phenobarbital for prevention of bleeding into the brain, and so on.

I'm not sure why some neonatologists thought it so necessary to use the Vapotherm without waiting for better evidence. It's appropriate that we always look for better ways to treat the babies, but let's evaluate them correctly. I think some neonatologists - and physicians in general - just don't have the scientific discipline to wait to evaluate a new thing before using it. Maybe we just want to be the first on our block with the new gizmo, but it''s better to be later and sure than to be early and cause harm.

Anticipation

The strains of the Carly Simon song "Anticipation" ran through my head as I watched the spinal fluid slowly, slowly drip from the spinal needle. I was doing a spinal tap on a baby and the slow moving fluid reminded me of the old Heinz ketchup - the slow ketchup - commercial where the ketchup gradually pours from the bottle while Carly Simon's song plays in the background.

It can be a little tricky when the spinal fluid takes so long to come out. You have two choices. You can take your time and wait for the fluid to come, but then the spinal tap takes seemingly forever to do, and the baby is stuck with a needle in her back for a long time. On the other hand, if you try to make it come out faster by turning or pushing in the needle, the fluid can either stop coming out or turn bloody, neither of which is desirable.

I decided to be patient and just wait. The baby didn't seem to mind - she had actually fallen asleep. To pass the time the nurses and I talked about the astronaut who drove from Houston to Florida to confront a possible romantic rival. You may have heard the story. That two members of this love triangle were astronauts was interesting enough, but the fact that the astronaut wore diapers from Houston to Florida so she wouldn't have to stop made it seem like a tale from the land of the bizarre. It turns out that astronauts wear diapers during takeoffs and landings, which makes sense, I guess, if you think about it - something I had never done before. I don't know about you, but when I see astronauts walking out to the shuttle I'll never think of them the same way again. I'll just be wondering if their diapers are clean.

We finally finished the spinal tap and I removed the needle from the baby's back. The baby, who had been so good during the procedure, now started crying, which seemed a little paradoxical. I looked around and could see no romantic rival to her; maybe she just needed her diaper changed.

Bungee

The mother came in with preterm labor at 21 weeks gestation according to her last menstrual period. Since she had no prenatal care, we weren't certain that the gestational age was correct, and as sometimes happens in these cases, when the baby was born he looked and weighed more like a 24 to 25 weeker. My partner resuscitated the baby, in accordance with the mother's wishes, and we admitted him to the NICU.

He really did pretty well at first. He was on a ventilator but on modest settings and not much oxygen. The afternoon of the admission I sat down with the parents and had a long chat with them about premature babies of this gestation. I told them, among other things, of the typical problems these kids have, the extended NICU stay, the risk of serious complications like intracranial hemorrhage (bleeding into the brain), the survival rates for kids like this - about 55% to 75% - and the percentage of survivors who have impairments - about one-quarter have major impairments, one-quarter moderate impairments, and about one-half are normal, although there is a high incidence of problems like learning disabilities, attention deficit disorder, and borderline intelligence in the normal group.

There was understandably concern in the parents' eyes after our talk, but hope too. I told them their baby was doing well right now, but he still had a long way to go.

About 24 hours later the baby was dead. The morning after I talked to the parents, he suddenly desaturated (the oxygen level in his blood dropped), and none of our interventions - ventilator changes, oscillatory ventilation, and so on - could get his oxygen level back up. An ultrasound of the head showed a massive intracranial hemorrhage (IVH). My partner and I discussed it, and after discussion with the parents he removed the baby from life support, and the baby died.

A variety of anatomic and physiologic features of very premature babies put them at risk for IVH. Fortunately, its incidence has decreased in the last 25 years, and most babies who have an IVH usually have a small one, but we still see awful ones like this from time to time. It's very frustrating, because they can be unpredictable. A kid you think might get one doesn't, and vice versa. This baby was cruising along nicely; he didn't need meds to keep his blood pressure up, had no fluid boluses, and was about as stable as a 24 to 25 weeker could be. Why did he have the bleed when other, sicker premies don't?

I couldn't help but think of the bevy of emotions this mother must have experienced in the last few days: The worry of preterm birth and losing the baby; the joy of the baby being older than thought and potentially viable; the sobering news of the possible outcomes; the hope caused by his initially good condition; and finally, the devastation of the severe hemorrhage and the sorrow of holding her baby as he died. I often think that the emotional journey of a NICU parent is like a roller coaster ride, with many ups and downs, but this mother's was more like a bungee jump. You don't recovery quickly from something like this.

Evidence

Some of the comments in my previous post Implants brought up the issue of evidence based medicine in the NICU. Evidence based medicine means using medical therapies that have been tested in well done studies and found to be beneficial, as opposed to practicing medicine according to the "Hey, this sounds like a good idea, let's see if it works" method. I am all in favor of using evidence based medicine and think that generally I practice it, but I have to say it's easier said than done.

There are a couple of ways by which people may fail to practice evidence based medicine. Some neonatologists, and physicians in general, fail to practice it by using therapies that have not been adequately tested for safety and efficacy. An example of this might be the liberal, unchecked use of high amounts of oxygen in the early days of neonatology that resulted in an epidemic of retinopathy of prematurity. (I'll post about another example in the next week or so.) At other times physicians don't practice evidence based medicine because they don't know the latest evidence. Neonatologists who continued to use steroids for BPD, even after studies showing their detrimental effect on neurodevelopmental outcomes, fall into this category. I know a couple of them.

Sometimes, though, we would like to practice evidence medicine but cannot, simply because evidence does not exist or is not conclusive regarding a given situation. Absence of data doesn't mean you don't have to treat a problem. I wish I knew the best way to treat hypotension (low blood pressure) in tiny premies - for that matter, I wish I knew when to treat hypotension in them - but the data isn't clear. That doesn't mean I can ignore the problem. In another example, I still have to feed babies, even though it's not well resolved how fast to increase a baby's feedings each day.

Although there is more to do regarding evidence based medicine in neonatology, there has been tremendous progress in obtaining good evidence through well done studies in neonatology. A very partial list of examples includes artificial surfactant, the use of IVIG to prevent infections, the use of oscillators versus conventional ventilators, Vitamin A for prevention of BPD, and phenobarbital for prevention of intraventricular hemorrage. All have been studied well, (some worked and some did not) resulting in better care for neonates. The establishment of networks like those of the NICHD neonatal research network and the Vermont Oxford Network have furthered the cause of evidence based neonatal practice and will continue to do so, as will the Cochrane collaboration.

We should all realize, too, that it is very difficult to do good studies in humans. Earlier in my career I did a couple of randomized controlled therapeutic trials. They were nothing earth shaking and very safe for the participants, but they were still tremendously difficult to carry out, requiring (appropriately) approval from the human investigation committee, informed consent from the parents, diligent supervision of the NICU staff to make sure they followed the protocol, and, last but not least, money. This was all in addition to my regular job taking care of babies. To say the least, it was a real pain to do.

Speaking of money, we could use all the help we can get in obtaining money for research. The NIH's budget is getting lower, not higher. Are you writing your congressmen to protest this? Are you voting for people who want to put a reasonable portion of your tax dollar into research? We're not perfect in neonatology, but unless you're part of the solution, you might be part of the problem.

Performance

There is some debate about whether large NICU's are better than small NICU's. There have been studies that show that large NICU's in general have better mortalilty rates than smaller ones. The studies aren't perfect, but it's probably true.

I have worked in both large and small NICU's and have enjoyed them both. I have been fortunate enough to work in units with good outcomes, where the babies have good survival rates and low rates of intracranial hemorrhage. In a large NICU you can be very busy and see all kinds of weird things. I suspect that the large NICU's have better outcomes because they are always in practice; some of the care becomes almost automatic. In a small NICU, though, it can be surprising how much interesting stuff you see. In my experience, I had a little more time to talk with the parents there, and the atmosphere was a little homier.

There are those who would say that health care payors, such as insurance companies, should require their babies to go to bigger NICU's, given the studies showing better outcomes in them. There was a time I would have agreed with that, but I no longer do. Could I be influenced by the fact that I have worked in a smaller NICU? Of course!

But here's the thing: The studies looking at outcomes of large versus small NICU's were using size of the NICU as a proxy, a substitute for the actual quality of outcomes at a given place, because the outcomes were not easily available. That is no longer necessary, because nearly every NICU now belongs to some collaboration of NICU's that keeps track of outcomes and lets you know how your unit is doing in comparison to others. (One of the largest of these is the Vermont Oxford Network, in which our NICU participates.) So it is no longer necessary to assume that a unit has better or worse outcomes because of its size. Instead, you can fairly easily compare the actual outcomes.

Although large NICU's might in general do better than smaller ones, there will be some large NICU's that do worse than smaller ones. It would be a shame to close those smaller ones and send the babies to larger units with worse outcomes, so let's stop this nonsense about assigning babies only to large NICU's and instead send babies to NICU's with the best outcomes, regardless of size. (You could make a case that small, good NICU's should combine and possibly become even better, but a discussion of regionalization of NICU's - or rather the lack of it - would give me a headache.)

Pay for performance. Supposedly it's coming. Let's do it right.

P.S. Due to some Blogger malfunction, you and I have not been able to get into my comments section for about the last day. I was able to see my comments, though, by going through my "edit posts" page. Thanks to all for the kind comments, well wishes, and suggestions.