The Consequence of Having Children While Carrying a Genetic Disease

 

Lord, grant me the courage to change the things I can,

The patience to accept the things I can't,

And this wisdom to know the difference.

- The Serenity Prayer

After our third kid was born my wife and I decided to have just one more. Four's a good number. I'm one of four kids, my wife's family is even larger. We would have one more and our family would be complete. That was the plan, but we got twins instead. We jumped from three to five just like that. But we didn't mind. I've always loved children. I'm an oddball myself and adult logic still baffles me. I understand kids better than I understand people my own age. My wife comes from a religious family who think of children as blessings and raising them to be the doing the work of God. So five was good. We were happy with five.

Then number six came because that blue contraceptive gel they sell at the grocery store doesn't work.

We're not sure how number seven happened. We were using every kind of precaution known to man and she still snuck through.

Seven was definitely enough. They were all loved and we provided a good home for them but seven? Really? So I got the operation. I looked up vasectomies and hysterectomies on this cool new thing called the internet and compared them, then decided I would get a vasectomy because it was less invasive than a hysterectomy would have been for my wife.

A vasectomy made it so my body wasn't produce any more sperm, but it didn't get rid of the sperm my body had already produced. A month after my vasectomy almost all the old sperm had gone and the chance of getting my wife pregnant was about one in a million.

You guessed it - a month later here comes Mister One in a Million. When we found out he was coming we couldn't stop laughing. Any kid who can beat those kinds of odds deserves a place in this family.

So we ended up with eight. Eight kids. My family name is secured, I guess, although I don't really see why I would care once I'm dead. But that used to be a big consideration a couple hundred years ago. Eight kids that I love, eight kids that even though only half of them were planned, each of them means the world to me.

And eight chances to pass my blindness down into future generations.

One of my doctors told me I'm possibly the source of the mutated gene, based on zero family history of RP and the late onset of my blindness. Another one of my doctors told me when a genetic disease like RP manifests itself late in life like mine did, it's more likely to be caused by a dominant gene instead of a recessive one. If that's the case, then each of my kids has a 50% chance of inheriting my blindness. If it was a recessive gene causing this they could only get it if my wife has a gene for RP, too.

There are about 2¹⁵ genes in the human body. We don't know exactly how many yet, we're still counting. The math nerd in me knows my kids inherit 1/2¹ of my genes and my grandkids inherit 1/2² and the nth generation of kids will inherit 1/2ⁿ of my genes, so it's a fairly safe assumption that after 16 generations none of my personal contributions to the collective gene pool will exist anymore. But for the next 700 years humanity will be burdened with my contribution of the RP gene. I won't live lone enough to see the results. My RP didn't show up until I was in my fifties. If my kids develop it at the same age I did I'll be about 80 when that begins to happen. And if it gets passed on to my grandkids I'll be over 100 and most probably dead by then.

This isn't something I think about often, but it's not something that I completely ignore, either. There's a vague sense of guilt. Assuming there's a 75% chance my RP is caused by a dominant gene and a 50% chance each of my kids inherits it then it's likely three of them are carrying it.

When I do think about it I feel like I've committed a crime against humanity, a crime that won't be expunged for 700 years.

Some of you younger readers might think the crime against humanity I committed was having eight kids in the first place, but I grew up in a different time, before climate change was on anybody's radar and during a time of exponential financial growth and optimism. Had any of us known back then what the world would become we might have reconsidered, but there's no sense applying the standards of today to the decisions made yesterday.

Anyway, here I am, father of eight kids, grandfather of nine more, and each of them has to deal with the fear of not knowing if they'll go blind, or if their own children will. That seems like a heavy burden to put on their shoulders, especially considering the state of the world my generation is leaving them. My American childhood began with Buzz and Neil walking on the Moon and it ended with the Berlin Wall coming down. The optimistic vibe my generation grew up in was set by those two world events. My kids' generation had 9/11 and two financial meltdowns instead. I feel my generation already stabbed my kids' generation, burdening them further with RP seems like twisting the knife.

Sometimes when I'm alone with my thoughts I wonder what I would have done if I'd known I was carrying the RP gene when we first got married. Would we have adopted kids instead or had some of our own? I don't know. On the one hand my father is an absolutely lovely human being, full of integrity and honor and intelligence. It would be a shame for his 2¹⁵ to end, and selfish of me to inherit so much I love about myself from him then not pass it down. Maybe that's what those ancient ancestors were trying to say about securing their family name. On the other hand, this pesky little thing called blindness. I owe the world's gene pool my father's integrity and my wife's beauty, but every contribution I make might be contaminated with an incurable genetic disease. I can't add one without risk of adding the other. All of my father's brilliance, all of my wife's goodness, inseparable from my blindness. Every kid is a roll of the genetic dice and there's no way of knowing which parts of us they'll get.

If a child could make an informed choice on the matter what would she choose? 25% of the magnificent mind of my father but a life of not knowing if the gene that causes blindness is along for the ride? Would it be better to settle for something safer, or would the chance to inherit some of my father's positives be worth the risk?

But it's a pointless question because my children didn't get to choose. Neither did the grandbabies. They're here, like it or not, with no vote on what genes they got.

Maybe I'm writing this as an apology to them. I'm sorry, little ones. There's so much visual beauty in the natural world, in the sunsets and in the night skies and in the wildlife and in a lover's smile, but not for you. Your vision is being stolen from you because of a defect in my genetic code. Yet your grandfather comes from a long line of soldiers and sailors, and your grandmother comes from an equally long line of police officers and fire fighters, so the courage to do the dangerous work it takes to keep your neighbors safe is coded into that same genetic code you got from me. How can I apologize for giving that to you? To the neighbors you'll keep safe?

You are what you are, little ones, grandchildren of a brilliant geologist who served his country bravely during the Cuban Missile Crisis, children of a mother who is love incarnate, but you're also potential time bombs of blindness. I can't change that. The Serenity Prayer tells me not to even try. Just accept the things I can't change.

I've accepted my own blindness. Why is it so hard to accept my children's?

Is it the world I grew up in, between the Apollo missions and the miracle of disarming the Soviet Union without either side firing a single nuke? We grew up knowing our parents were better off than our grandparents had been during the Great Depression and the Dust Bowl. We grew up knowing we would be better off than our parents. We fully expected our children to be better off than ourselves. We saw two generations worth of evidence and extrapolated it forever, convincing ourselves the growth between the Wright Brothers' first flight and the Lunar landings was expected in a single human lifespan, and that our grandchildren would be better off than we were to the same degree that we were from our own grandparents. With that in mind, does the dream of a utopian world with flying cars and unlimited happiness we expected for our children make it harder to accept my contribution of a genetic disease? My grandparents beat Nazism to give their kids a safer world, my parents put televisions and microwave ovens in every home and opened space up for us to explore, and the best I could do for my kids is RP and twenty trillion dollars of national debt?

Again, the Serenity Prayer. I can't change the unrealistic expectations my generation grew up with, but I can accept they were unrealistic and stop judging myself by them. I won't let my daughters fat shame themselves because of the unrealistic Photoshopped pictures of models they grew up with, by the same token I shouldn't parent-shame myself because of the unrealistic predictions of Utopia I grew up with. I get that.

But some of my kids are likely to go blind! How do I accept that? Yes, it's true I didn't know I had that gene before we had them, and yes, it's true I didn't pass it on on purpose, but it seems callous to just shrug it off and say it wasn't my fault. Blindness is too big to shrug off. It feels too personal to say it's not my fault.

So here I am, trapped in a box. It's not my fault but I can't stop feeling responsible. My father's genes deserve to be passed on but my RP gene deserves to die off. My own kids need to decide if they want to risk passing this on, but what if they choose not to have kids because of the fear of something they don't even have? Would the world be robbed of their children's potential? And why should I bother asking myself these questions when there's nothing I can do? The deed is done and second guessing my children's existence cannot change anything.

Wait, I worded that wrong. Of course I don't want to wish them out of existence. But do I wish they had someone different as their father? That's a harder question. The old nature vs. nurture debate; how much of who you are is programmed into you by your genetics and how much of it is programmed into you by your society? Would kids my wife and I adopted have turned out as good as the ones we gave birth to? Would Chris still have enlisted in the Army if his genetic tree was full of accountants instead of soldiers? Could he still beat grandmasters at chess if he didn't inherit some of my father's brilliance? And if the answers to those questions is no, is the chance of carrying RP around in his genes worth what he inherited from me?

I'm just repeating myself now, asking the same questions over and over because I don't know how to answer them, but still asking them because I don't know how to let them go. The hardest part of the Serenity Prayer for me is the last line, the wisdom to know the difference. It is what it is. What is done is done. The past can't be changed. So it's time to let this go. The answers to some questions can never be known, but it's still good to ask them.

I've asked. Each of you are witnesses. Now I'm letting go of the question, accepting the answer can never be known.

Thank you for reading.