My dear, dear colleague “Rita” had a daughter born with significant genetic issues; basically, the poor baby lived her first two years in the kids’ ICU. She is five today, in a wheelchair, has significant developmental disabilities, and is a sunny, loving, and very loved kid.
Baby, of course, caused a significant amount of emotional and financial costs. Rita and her husband have had to rearrange their entire life and lived through at least a dozen dire crises where they were told Baby wouldn’t make it. Rita says our work insurance paid out $4+ million dollars in care and they are $200k+ in debt for things insurance doesn’t cover.
Last week Rita confided they are working on getting pregnant again. The docs told them there is a significant risk of the same genetic issues Baby has, but Rita seems to be going with the “we’ll leave it up to God” position.
The asshole in me envisions a few years down the road where co worker is lamenting bad things with child number two and saying something along the the lines of “what did you expect?”
Yeah, that’s awful. They should adopt if they want more kids. I can’t imagine deliberately putting another child at risk for those kinds of complications.
I don’t know how else to say it. Love frequently makes people do stupid things. Love helps people deal with hardship, but it creates it too. Sometimes I think love isn’t all its cracked up to be.
Even if the second kid doesn’t have any defects, it will be hard. It will be hard on the parents, but especially hard on the kid, having to share attention with a sibling who has so many needs.
I try not to be judgey, and I’d probably, for the sake of my own cognitive dissonance, try to reframe it in my brain as a testament to how even people with severe health challenges bring joy and love to others, and that parenting a special needs child is hard, but worth it.
…but yeah, I wouldn’t do it. I would, despite my best efforts, be judgey in my heart. Kids usually outlive their parents. So they’re not only setting themselves up for another challenging kid - which is totally their right! - they’re likely burdening someone else, who will have to take care of the grown kid(s) after they’re gone, not to mention the burden on the children themselves.
I’m all for offering support, compassion and assistance to people with unforseen medical conditions. It’s kind of what I do as a nurse. But I can’t see choosing to force someone else to do it on purpose.
But disabled people can live lives with meaning, and disabled kids can bring joy. And of course plenty of perfectly able people can end up utterly miserable.
At some point along the relative risk curve you go from risking a kid with serious genetic problems to for all practical purposes creating one on purpose.
Thanks for the responses, this is a rough situation. They are incredible people and parents whom I love a lot and have shown an amazing amount of courage, but a second pregnancy with a 60/40 risk seems to be a profoundly bad idea.
Among other things, if second child was born with the same issues my friend would have to quit work and hubby isn’t insured. I doubt that public healthcare would ante up the millions of dollars our private insurer did (and will continue to do so) to care for Kid One.
To answer above: Kid One’s physical and intellectual needs require lifelong care. I think max cognitive capacity will be toddler level.
I think I’m going to gently suggest some talk therapy prior to them making a decision. I know she’d like my enthusiastic approval but I can’t offer it, which makes me feel hard-hearted and judge-y
These people may be too religious to consider this, but if it were me, I’d go for in vitro and embryo screening. If it’s a genetic disorder, I assume it can be detected.
I don’t “leave it up to God” as to whether food I eat is poisonous or not, so why would I leave something like this “up to God”?
They knew about the genetic problems early in the first pregnancy; due to their very strong religious convictions they decided not to terminate. It would not have been my choice, but I admire their courage of conviction and Kid is adorable and very happy.
It would scare the livin’ crap out of me to conceive another child, knowing the real risks.
BTW, I would also never presume to tell another couple what they should or should not do with their reproductive choices. If asked, I’d speak my mind, but I wouldn’t volunteer advice.
I’m pretty sure that termination would never be an option they’d consider. Love them dearly, but they do veer toward the Crazy Christian thing – in their world, God doesn’t give you anything you can’t deal with, etc, etc.
Deliberately getting pregnant again isn’t leaving it up to God. Being 200K+ in debt, I’d argue that God already gave them more than they can handle. Even if the next kid is healthy, he or she will get shortchanged financially and the burden of sibling care long after the parents are gone.
There are a number of ways they can be a parent of another child that doesn’t have that significant genetic issue. And if they don’t have a problem taking care of another child with that significant genetic issue I’m sure there’s one with the same or similar problems already out there that needs parents.
