Post 14: The Other Decision - Vaccines

About a month ago, I mentioned how the first real deliberate decision the wife and I had to make for S was sleep training. That statement is only partially true. The real first decision we made on his behalf was actually made a couple weeks before he was born- and that choice is to figure out who S’s pediatrician is going to be. And that decision is essentially about one issue: vaccines. Before going into this topic, I should probably indicate that I haven’t come to a firm conclusion on the topic, and a lot of the data that I’ll be talking about below is potentially subjective. Perhaps the only thing I’m sure of is that I get a little queasy around folks who are doctrinaire (either about the pros or potential cons) of vaccinations. When I talk to some parents about it, it feels like I’m talking with a Likud representative or Mahmoud Ahmadinejad about the Israeli/Palestinian conflict. Emotions can run at a fever pitch, but I suppose that’s how almost everything is when it comes to parenting these days.

I grew up under the impression that vaccines were one of the all-time great innovations responsible for dramatic improvements in the quality of human life. They are rather cheap to administer, and diseases that used to threaten entire communities are essentially eradicated today due to widespread vaccinations. I largely embraced the conventional view and like most pre-parent people, I didn’t really give this much thought... until my friends started to become parents.

Then over the past couple years, I started to notice something. This is purely anecdotal but a too-large-to-ignore percentage of folks in my not-too-distant social circle were dealing with the challenges associated with raising a child w/ autism. If anyone has ever been around a child with autism, it’s an incredibly difficult situation and I have so much admiration for the parents that I’ve seen who deal with this condition courageously/admirably. Autism rates were supposedly 1 in 10,000 a couple decades ago and they’ve risen to the order of 1 in 100 today. It seemed like 1 in every 15-20 parents I knew were in this boat. Furthermore, every single one of these autistic children are boys. If you do the math, what set off a little bit of an alarm bell within me was that my colleagues and peers seemed to be experiencing this at a rate that was far higher than the unconditional mean. To be totally frank, many of my friends are similar to me in that they are a little older when having children, and on the higher end of the socioeconomic spectrum. A couple articles I read indicated that autism is one of those rare conditions who’s prevalence appears to increase with socioeconomic status.

When I asked these parents about their experience, a not insignificant portion- (maybe even the majority) believe that the vaccinations were the root cause. I am not formally trained as a biochemist, and so I cannot comment or critique the validity of their thesis, but suffice to say that these are individuals with the best educational training the world can offer, and some are experts in medicine. What’s even more interesting though is that children growing up over the past decade or so though is that cheap/easy access to HD camcorders and storage allowed us to document their lives moment by moment (I have nearly a hundred of Gigabytes of video/pictures already on Samuel!). One close friend has a wife who was a videographer before she became a full-time mom, and so she has hours of footage every week. When she went back and watched the videos of her son after receiving the diagnosis, she specifically noticed a drastic change in his behavior in the days/weeks following a particularly intense sequence of vaccinations. Of course, it’s just one data point, but an interesting one.

When I began to consult the medical profession about whether or not there is a linkage between vaccines and autism, I got an extremely strong reaction. Books written by doctors reference study after study that indicates that there is no relationship between vaccines and autism. The first pediatrician we interviewed, I asked what he thought about the possible linkage. He promptly rolled his eyes, said that parents who are out there saying that vaccines are linked to autism have lost their minds and are responsible for a potential public health crisis, and furthermore stated that he refuses to take on any child where the parent is not willing to stick by the vaccination schedule recommended by the American Pediatrics Association 100%. I certainly appreciated his candor and transparency, but for the record, we decided not to go with this pediatrician.

To be fair, there are equally strong and charged statements that come from parents of children with autism. Some have written extensively (the Internet was made for this kind of stuff) about their reasoning for why a linkage exists, and they are accusing the medical profession of “poisoning our children”, and argue that there is a vast conspiracy between Big Pharma and the Medical “Priesthood” that perpetuates the myth that there is no downside to vaccinations. Vaccines are certainly a big business, and so there’s enough data to support a conclusion like that, if you’re the type that wants to go there. Especially with ever increasing amounts of evidence that seems to support the idea that big government and big business are largely indistinguishable.

At this point in the game, I have decided to hold off on giving S any vaccines. It’s not because I think big Pharma and the State are evil (well, actually, about the State....). I do find mandatory vaccinations schedule today a bit heavy-handed- especially things like Hepatitis B- why does an infant need to be vaccinated for a sexually transmitted disease? But the primary reason why we’ve decided to go this path resides elsewhere. At some level, this boils down to me going against the advice of the medical establishment. Isn’t it a little arrogant to think that I know better than all the doctors and institutions that have come to the conclusion that sticking to the vaccination schedule is the best for my child? This is a totally valid question and I suppose I am swayed a little by experience in my own field. As most of you know, I’m in the business of investing. I may not know anything about most things, but I think it’s fair to say that I am reasonably qualified to speak on matters of investing/finance. After 13 years in my profession, I’ve basically come to the conclusion that conventional wisdom as determined by the finance and economics equivalent of the AMA (you know- professors at places Harvard and MIT) is somewhere between 80 and 100% wrong about how best to invest your money. Yes- I repeat- the vast majority of financial advisers who the general public go to for investing wisdom are giving you advice that is at best suboptimal, and quite possibly at odds with your goals. What makes this comparison relevant is that there are interesting similarities between investing and medicine. While both fields have benefited enormously from deploying mathematical rigor to the problems they seek to solve, there are severe limits to reductionism. In addition, I think that one of the things that leaves both fields in tenuous places is that there is really no common way to think about risk. Statisticians/Economists try to capture it as the 2nd moment (variance) of a distribution, but in reality, risk is a highly subjective concept. What I perceive as a very safe investment is perceived as unbelievably risky by another. What I perceive as a very risky medical intervention is viewed as very safe by another. Thus attempting to come up with general rules that work across any reasonably sized population is unlikely to be fruitful. The medical establishment has taken the view that there is no relationship whatsoever between vaccines and autism. I’m actually not quite so sure, but perhaps more accurately, I am more willing to bear the risks of not vaccinating than I am of bearing the risk of vaccinating. Life is about trade-offs, and this is the one I’m comfortable with right now.

No doubt that there are physicians who are reading this whose opinions I deeply respect that might think I’m foolish for coming to this conclusion. I am fine with that. In some sense, what this whole exercise has demonstrated is that you really can’t outsource the important decisions in your life. If I don’t believe something deep within the core of my being, then it doesn’t matter who says it’s a good idea. In any event, so much of parenting is less about what is objectively the best thing to do and more about what approach meshes well with one’s internal compass and overall disposition. I don’t want to sound relativistic, but I guess I feel like there are so many ways to do parenting well, and it’s less about the rules and more about general rhythms. In that way, it’s quite similar to stage 4 faith as I understand it [go to Post 1 for a definition]. There was a time when I thought that believing something because some pastor or author who I respected held that view was sufficient. But in many ways, this thinking is quite similar to believing that one’s relationship to God needs to be mediated through a priest. My reading of the bible tells me that a grave mistake that is repeated throughout history by the people of faith is the belief that some surrogate exists or that knowing God through a proxy is sufficient. There is understandably an enormous temptation to think that there is someone or some elite group of people that has “the answers” or at least “a blueprint” to making everything work well. We all want to feel concrete under our feet. However, I have attached myself to this wildly optimistic (and ambiguous) idea that we have direct and personal access to the God of the Universe and that His statement, “I am the Truth”, implies that the truth about all the important things to make life work can be known directly by each of us. Granted, I can’t prove that this approach is working. I don’t always hear perfectly and the periods of silence when I can’t hear anything are maddening. The Richard Dawkins of the world would be correct in dismissing my judgment as irrational and my only response would be similar to the one the man born blind gave to his interrogators in John 9:25- “I was blind, but now I see.”







Conan O'Brian hair style

Post 13 - S's Surgery

About a week ago, S had a minor surgical procedure to correct a malfunction in his left kidney. We had known about this issue since he was about 6 months in the womb, and we were monitoring it since he came out of the wife. Since a person only needs 1 kidney to function, there was no impact on his life thus far as his right kidney is perfectly fine. For the most part, this is the kind of thing where most people don’t even realize there’s an issue until they start drinking in high school/college years and one’s kidney starts to go into overdrive. Nonetheless, the doctors recommended that we perform this procedure now since the sooner this is corrected, the better. Given that it had a high 90s success rate (and little downside, other than the fact that he had to go under), we acceded.

The simplicity of the process notwithstanding, we were still a little queasy about a 4-month old having surgery. Yours truly has managed to avoid the medical system for most of his life and has never so much as taken prescription medication. The one time surgery was recommended for a torn labrum in my right shoulder, I decided to instead enlist in the help of our church’s prayer team- and I am happy to report that a lot of prayer, and a little change in diet, and some simple physical therapy has led to a shoulder that has completely healed itself. The thought of S going back to the same hospital months after his birth really irked me. I probably have a slightly irrational fear that only bad things happen when engaging with the medical system, and so I am admittedly not at my best when dealing with hospitals and doctors.

The surgery was totally fine. It took a little longer than expected, but as of now, it’s been deemed a success. It was after he came out of the operating room and entered the recovery wing is when things got difficult. I had figured that since sleep is essential for a recovering child, we would have our own private (i.e. quiet) room in the pediatrics ward to get S back to 100%. However, they showed us to a room which was set up for two, and there was another patient behind the curtain in the room where we were assigned. As we settled into our designated quarters for the next 24 hours, I was annoyed with our situation as the child on the other side of the room had his television on at a volume that was likely to preclude S from getting the sleep he needed to get well. Even more disruptive was the manner in which he would holler/moan loudly every 5 minutes or so, thus pretty much ensuring that as soon as S was lulled to sleep, he would be startled awake by the sounds on the other side of the curtain. I had finally had it after S was woken up the umpteenth time, and I decided to make my way over to the other side of the curtain to politely ask the young boy to turn of the television, and quiet down so that my 4-month old son who had just endured a surgical procedure could get some sleep.

When I rolled back the curtain, what I saw could only be described as heartbreaking. On the bed was a quadriplegic child with the face and torso of a 10-year old, but arms and legs that were emaciated and mangled in a way that rendered them physically useless. He clearly could not communicate in an articulate fashion. When I made eye contact with him, I wasn’t sure if he saw me, but I was sure that he had no idea that I was the man sharing a room with him. What was probably the most heartbreaking of all was the sadness in his face. There was no parent in the room with him, no family member tending to him, the only contact he received was the nurses who came in every so often to change the channel, feed him, or give him a sponge bath. Here I was dreading the fact that S would have to spend another 24 hours at the hospital, and I later learned that this poor young fellow had been in the hospital for quite some time, just laying in bed all day, alone the vast majority of the time, unable to communicate meaningfully with other people, and no family or friends by his side.

I thought about these two young boys- my son and this severely disabled fellow briefly sharing a physical space, and yet their lives could not be more different. S had both his parents in the room with him, 2 of his grandparents, and countless other friends and family praying for him during his brief stint in the hospital. This other boy was completely alone. In a matter of hours, S would be back in his home, being tended to and loved on by so many, continuing a life full of blessings and promise. This boy right now is likely still in the same bed, watching the same cartoons, and moaning and hollering in the same unexpectedly predictable way. It all seemed just so... unfair. How is it just that one child is dealt a hand like S, and another is given such a drastically different lot? I had a moment where I was just so upset at the boys parents- how could they just leave him in a hospital like this, and then it occurred to me that perhaps the boy’s parents are not alive, or perhaps they just couldn’t take trying to tend to him anymore. Indignation quickly became empathy.

I first felt a deep sense of shame as my frustrations with this helpless boy revealed how self-centered and myopic I can be when it comes to the comfort of my precious son. I turned my anger towards God, and I was reminded how in The Brothers Karamazov, Dostoevksy shares his view that the suffering of children is an inescapable objection to God’s goodness. This objection to my faith was never more poignant than in seeing this boy’s situation. I recall when reading TBK many years ago, issues like “the problem of evil” and “how can a good God allow innocents to suffer” were something to ponder, but it was always done at a safe distance. I knew (know?) so little about genuine suffering- it was more of an academic exercise where reconciliation of two seemingly contradictory ideals was the goal. But everything changes after becoming a father. The same question is out there, but the power of logic is subordinated to narratives and personal context. It’s a little bit like what happens when I see a homeless person on my street- I used to try and assess the likelihood of individual X- as a recipient of a random act of kindness- might allocate those resources towards unproductive/addictive substances. These days though, it’s less about assessing that probability and more about realizing that at some point many years ago, these people too were probably being doted on and receiving the same kind of love, affection and hope that S is experiencing today. We all begin with such unbridled hope and endless possibilities for infinite upside. My mind can’t help but to ponder, “What went wrong between then and now?”

I’ve always felt that those (like Dostoevsky) who criticize our faith for its inconsistency had a very valid point. However, a gentlemen who I’ve gotten to know recently mentioned to me that he likes our church because we are comfortable living with the inherent contradictions in our faith. I thought that was keen insight into one of the key attributes of our community. Seeing S’s life path cross this boy’s in the pediatric ward of NYU was a perfect demonstration of the kinds of contradictions I am forced to get comfortable with. I suppose when God told Adam to “fill the earth and subdue it”, He was telling us that the evil in the world is not something that requires an explanation, but instead something that must be confronted and subdued by the children of God.

Samuel learning how to do praying hands on cue: