Friday, 28 July 2017

An Unplanned and Chaotic End

Just two days ago, I shared some of my thoughts on Charlie Gard, a tiny English baby born with a congenital, terminal ailment that has destroyed his little body over the past year. 

His parents have struggled with the child's doctors and the hospital that has been his home now for most of his brief life. Chris Gard and Connie Yates, the parents of little Charlie, have been in a legal battle with the famous Great Ormond Street hospital in London (perhaps most famous as the beneficiary of the proceeds of the classic Peter Pan children's book and its offspring on stage and screen) over how best to care for the little boy.

The condition Charlie suffers from, "infantile onset encephalomyopathy DNA mitochondrial depletion syndrome," is incurable and ultimately fatal. An experimental therapy is available in the US, but has not as yet been demonstrated in randomised, controlled trials to be safe and effective, and thus remains outside the canon of approved treatments; Columbia University professors had agreed to allow compassionate use for little Charlie, and a "Go Fund Me" charity was set up that would have more than paid for the expense of bringing the child and his parents to New York, but in the UK, doctors can block treatments, even if the parents wish that their child receive them, if they decide that the treatments are not in "the best interests" of the child.

Ultimately, the High Court agreed with the doctors, and Charlie was not allowed to come to the US.

The final wishes of the parents of Charlie were that he be allowed to return home for his final day (or days), away from the hospital, the noise, the press. The lawyers for Great Ormond disagreed, and again, off to court the case went.

Today, a decision has been handed down by Mr Justice Nicholas Francis that Charlie is not to be sent home, but rather, to a nearby hospice. The reason given was that such a move would be "too dangerous" and might bring about an "unplanned and chaotic end to Charlie's life," according to reports.

The story itself is extremely distressing - no little boy deserves this sort of fate; nor does any family. 

I asked then, and now, what defines "humanity?" I would think, how we take care of the truly helpless in our midst. Surely, a little boy qualifies, doesn't he? Have the courts acted humanely? I'm not so sure.

When someone dies, especially unexpectedly, we often hear how the person died "suddenly."

Life - and its cousin, death - are like that. For all of us. Death is always sudden, isn't it? You're alive. And then you aren't.

"An unplanned and chaotic end." The very words, issued by the hospital defending its choice, are haunting.

Death is almost always "chaotic and unplanned," isn't it? 

Charlie Gard will be one year old if he is still alive in one week - his birthday was on the fourth of August last year.

I think Charlie Gard has deserved better than this in his final days.

Thursday, 27 July 2017

Number (Plates) Matter

I just returned from a brief trip to the DMV - something not often said. Just as an aside, if you live in our great state of California, I cannot stress enough how important it is to make an appointment on-line if you ever, ever, ever need to go to the DMV. My appointment was for 2 PM; I walked in at 1.50, and at 2.05, I was standing at guichet 13. The line for those poor souls who just walked in went around the "Disneyland" ribbon lanes three times and out the door. 

The DMV - it's just like The Happiest Place on Earth, only no Pirate ride or teacups.

Anyhow, my business today was to register my antique number plates for my 65 year old MG.

California, like many other states, has a "year of manufacture" programme that allows owners of classic cars to register original number plates to their vehicles if they can:

  1. obtain an original (no replicas) plate that is
  2. not in a letter/number combination already on the road ("DMV clear" in the vernacular)
  3. matches exactly the year that the title of your car (or truck or motorcycle) indicates is the year your vehicle was manufactured.

Prior to the second world war, the state issued a new number plate every year, but subsequently to save steel for the war effort, following 1941, rather than issuing entire plates, small metal tabs with the new registration were issued. In 1957, the metal tabs were dispensed with, and tiny adhesive stickers replaced them. This is the system still employed in California.

As a result, cars in new plate years (1951, 1956, 1963, etc.) require only the plate, but off-plate years require the "base plate" plus the tab or sticker that matches your car's year.

This complicates matters just a bit, as my 1952 MG requires thus that I not only obtain a matching, non-registered pair of base number plates, but also two tiny yellow metal tabs with '52' on them.

After many, many months watching eBay for a DMV 'clear' set AND a pair of 1952 tabs, I was finally ready to head off to the DMV.

The paperwork is now filed, and I await the official stickers and registration form, which I am told will be about 3-4 weeks.

I'm really jazzed to put the "new" plates on the car. 

I've written before about California's number plate schemes here. I'm a numbers guy, and easily amused/entertained by patterns, so this sort of thing is up my street. 

At the time (May 2012), the state (which in 1982 switched to 7-digit combinations to accommodate the massive number of vehicles on our roads) was nearing exhaustion of its 6XXXNNN series. I estimated, at the time, that all of the combinations up to 9ZZZ999 would be used up in perhaps 11-12 years (or, some time in 2023).

There is a web site here that tracks the current, highest number sequence of every state that has been seen - people from Alabama to Wyoming send in sightings to the keeper. According to the current standing, California is up to 7ZMV309. 

We are very, very soon going to exhaust the 7-series, and from the noisy workshop in Folsom, Corcoran, or San Quentin will emerge 8AAA001. I am guessing, perhaps in late August or early September.

How's my projection look?

In mid 2014, 7AAA001 appeared. My calculations, based on my own number plates, were that a series is used every 3.5 years or so. If we turn from 7 to 8, the pace has accelerated slightly. 9AAA001 should issue in early 2020, and the final 9-series in mid to late 2023.

Not too bad for some back of the envelope sequencing.

Not sure what Sacramento are going to do - adding an 8th place is unlikely to "fit," and almost surely would crash the antiquated computer tracking systems of the DMV.

I guess that they will do what was done with the commercial plates when the final 9Z99999 was issued a couple of years ago, and just "flip" the order. If so, my money is that someone will walk out of the DMV in November 2023, the proud owner of 001AAA1.

Tuesday, 25 July 2017

Au Delà Je Suis Charlie

One of the gifts - and curses, I suspect - of age and the passage of time is a certain creeping circumspection of things that we had not considered as young people. These days find a growing chorus of noise about artificial intelligence, the place of machines, and what is to become of human beings when our creations can outreach us.

I think a lot about what it means to be a human being; what defines our humanity, what rights does it afford us?

And what obligations as well?

Today is a significant day for our family, personally. 23 years ago I lost my father after a short battle with cancer. This is, as I have said before, the last year of my life that my dad will have been in it for more than half. (Next year, I will be 48, and my father, gone for 24 of those 48 years).

My dad battled his cancer as he could, attending radiation therapies, walking each day when he could to build his strength, and enduring a course of chaemotherapy. All, ultimately, could not help him. 

I've been somewhat casually (if I am being truthful) following the story of little Charlie Gard, a tiny little boy born in England last year, afflicted with a horrible genetic condition called "infantile onset encephalomyopathy DNA mitochondrial depletion syndrome." Little Charlie was apparently a normal, healthy baby when born, but who, a month later, began to display symptoms of weakness. He had difficulty lifting his head.

The disorder is a terminal one that rapidly depletes the mitochondrial DNA (mitochondria are, in layman's terms, called "the power plants of the cells"), resulting in initial weakness and eventual systemic failure. No curative treatment is available, though there are experimental therapies involving nucleosides that may prolong life and improve the prognosis.

Research is primarily in the USA, and funds were quickly made available through "crowd" and other sourcing to pay for the expenses of bringing little Charlie to New York. However, the law in the UK intervened - the doctors at the famous Great Ormond Street Hospital reckoned that the treatments, which are not curative, would not improve Charlie's quality of life. His parents disagreed, and the courts ultimately sided with the hospital.

Charlie would not receive the experimental treatment, and later, when his condition deteroriated, the Court again sided with the hospital (against the wishes of the parents) to remove life-support from the baby.

Today, Charlie is in the news once again - his parents, having exhausted their appeals, have asked to bring their son home so he can die there rather than in a hospital. Incredibly, the hospital again argues against the wishes of the parents, and the Courts once more will decide.

I confess that I do not know enough about the science involved to render an intelligent opinion of what, medically, is 'best' for Charlie. While I am not a medical doctor, I am a parent, and I can only imagine the horrible position his parents are in.

As a personal aside, during my wife's pregnancy with our son, at one point an ultrasound revealed potential "soft bio-markers" for trisomy-18, a catastrophic genetic condition that is prenatally fatal in more than half of all cases, and fewer than 1 in 10 infants survives to his first birthday. Our son was healthy in the end, but waiting the three days for further test results is, honestly, one of the most terrible times in my life. I am and will be eternally grateful that we were not forced to confront horrific alternatives.

As fate would have it, little Charlie Gard and my father share the same name.

It's, again, not my point to argue what the process in the UK is, or that the Court has made an error. 

But I am troubled, again, by questions of what defines our humanity. What obligation do we have to those who, literally, cannot speak for themselves? Who could be more helpless than a newborn? Who, more deserving of our protection?

I am haunted by the images I have seen of a robed, bewigged judge telling a mother and father that, no. Your child is not going to be allowed, despite your wishes, to be taken for an experimental treatment that may (but also may not) help him. 

Is little Charlie suffering? Would extending (or not?) his life further that? I have no idea - but I doubt that Mr Justice Francis does, either. I have a sneaking suspicion that part of the debate is with an eye towards allocating precious health care resources in resource-constrained environments.

In another context here, I read a French philosopher and ethicist called Chantal del Sol, state that motherhood is
...not the making of a baby in utero through the act of insemination.  A child is not a product, or a thing; it is not an object, but rather, a person.  That is why we have a word - procreation - to distinguish birth from say, a glass-maker or a manufacturer.

Human beings are not products. 

We hear a lot these days about this or that "right" that each of us does or does not have. I agree with some, but more often than not, what I hear are "rights" more or less boil down to "you have to pay for my choice to do X."

The most fundamental right we have as living beings is the right to live. What I feel is a real measure of our humanity is how we stand up for the voiceless. The truly weak.

I cannot help feel that, in this case, humanity did not perform terribly well on that test.