I have struggled with how to write this post. I have thought about the issue from a multitude of different directions, and I still have 10 puddles of discrete thought, and no idea of how to collect these thoughts into one body of water. And I need some help.
1. In my professional life, I spend a large part of my time managing risk for the organization I work for. Managing risk is handled in a variety of different ways, through policy, through training staff to be aware of and address risks, through computer systems that flag certain things or don't let staff perform certain functions, through identification, through common sense. Much of what I do is about identifying a risk, quantifying it, and determining what, if anything, should be done about it.
2. How do we quantify risk? We use a measure of Probability (P), Impact (I) and Cost (C). In other words, we take the likelihood that this will happen (P), the impact to the organization (I) and then we try to figure out what it would cost the organization to fix it (C). Which turns the entire question into a number and a mathematical equation, that we can apply some certainty too. Part of the risk tolerance business is trending. Just getting a number doesn't help much. You need to compare the number against something. Options include doing nothing, using another solution, outsourcing the work to someone more experienced. That's how you take the risk number, and start getting somewhere with it.
3. What does the risk number actually mean? If I told you that there was a risk of 1 in 1800 that an asteroid would hit the earth and wipe out your entire country, you are very likely to shrug your shoulders and say 'oh well, gotta go sometime'. This is because while the I (wipe out your entire country) is very high, the probability (1 in 1800 chance each century) is very low. There are much more likely things to happen. If I told you that the probability that you would change jobs is very great, but in all likelihood you will make more money when you change jobs, you are also equally likely to shrug your shoulders. The P is great, but the I is likely low.
4. So, I come back to my conversation last night - where someone asked how likely it was that "it" would happen again. It, of course, meaning, will another baby die. 30% I answered. I have a 30% chance of developing pre-eclampsia between 23-26 weeks, before the threshold of "real" viability. Which means, a 30% chance of another baby dying. Invariably people respond that "oh, so a 70% chance of another baby living - that's good news, focus on that." And invariably, I want to scream.
5. Part of it is the numbers. I am 60 times more likely to loose a baby. The average woman has a 99.5 percent chance of being presented with a screaming, wiggling baby at the end of her labour. I have, at best a 70 percent chance, and that doesn't take into account the risks of a premature baby. You see, if we say the impact (I) is "dead baby", and my probability is much greater, it's just not something I can ignore.
6. So then, we might ask what the medical experts and I can do to reduce either the probability or the impact, or both. That's what you would usually do to manage risk. And the answer is: a whole lot of not much. Low Dose Aspirin, which might help, although there are no large studies. There are also no large studies about the risk of the drug to a foetus. Blood pressure medications, which don't halt the progression of the disease, but may buy some more time. Diuretics, which may help my kidneys. Magnesium Sulfate, which prevents seizures and saves lives. Serial ultrasounds, which will at least tell us if something is up. Putting me on bed rest. "We'll watch you very closely", the Doctor's say. And I have this wonderful and terrible image of roadrunner watching Wylie E. Coyote going over the cliff with the acme jet engine strapped to his back. Really, not a whole lot of things to do. And it's not that my doctor's are bad, it's just that truly, there isn't much they can do about a disease that they don't know how to cure, because they don't know what causes it.
7. I come back to those words, "a 70 percent chance the baby won't die". And I have heard this from so many people. Now, some of them are the "sunshine and roses" brigade, any disturbing news upsets them, so they focus on the positive. I have to confess, I'm generally speaking, a focus on the positive kind of person. Up until the moment that they told me that they had to induce me, I was positive, I held on to Gabriel living. I would rather dwell on the good than the bad. But in this case, the risk is higher, and the bad, well it's just so very bad, and it's a bad I know so excruciatingly well.
8. Now, I want to take their heads, and beat them around a bit. I want to tell them, if you think a 70 percent survival rate is so wonderful, you take a look at the three people you love most, and tell me which one you think should die. And I will happily tell you that "hey, at least the other two lived!". Because these odds, they totally suck. Totally, absolutely, completely.
9. And I don't know why their optimism bothers me. Obviously Mr. Spit and I have looked at the odds, and we are willing to try again. Obviously we are hopeful for that screaming baby. I don't think we are blindly stupid, ignoring the risks. But we are obviously hopeful that this time it's our turn to win on the giant roulette wheel of life. (In which your odds are 35:1)
10. But please, and this is the help part of the question if you are still with me. What do I say to people who only talk about the 70%? How do I communicate how concerned we are about the 30%. How do I communicate that my risk is way higher? Should I even do that? I don't want a medal for getting pregnant, I don't want to be told I'm brave, but I do want everyone to know it won't be easy, and it may not turn out as planned? I need people to understand that everything is not "ok", and it may not turn out well, and I have a much higher risk of it not turning out well.
Am I loosing my mind for expecting, hoping, wanting people to understand this?