The other day I was getting some coffee at a local café, and I noticed several young, professional-looking people sitting at a table nearby. There were three men and two women, and they were talking animatedly about recent developments on the TV show, “House.” I enjoy a medical mystery as much as the next person, so I became a fan of this show in its earliest days, and for the most part I’ve stayed abreast of the twists and turns of the plot. This season, one of the doctors working with House has Huntington’s Chorea, a degenerative, terminal, and torturous illness. The disease is inherited in an autosomal dominant manner, meaning that if someone who has the disease has children, those children will have a 50% chance of inheriting the disease. If the gene is present, it is dominant, meaning that you can’t just be a carrier – if you have the gene, you have the illness. This character recently expressed a desire to potentially have children with the man in whom she’s interested. The audience wasn’t informed of what, specifically, she meant by this – whether she wanted to give birth to children that are genetically hers, whether she wanted to give birth to children with donated genetic material, or whether she wanted to pursue adoption. This group of incredibly opinionated people, though, seemed to find all of those options absolutely abhorrent.
I sat there and listened, trying not to betray the fact that I was (1) listening to their conversation and (2) incredibly hurt by what they were saying, as they argued that people with similar genetic and medical predicaments should be prevented from having children, and that choosing to have a child that could be impaired by a severe illness and even exposing a child to the struggles of an ill parent was tantamount to child abuse. There is so much I want to say about this topic, so much that I think people need to understand, that I’m not even going to try to tackle all of it in one post. Right now I’ll restrict myself to the genetic aspects.
I have a severe chronic illness that, while not traditionally considered progressive, tends to cause increasing wear and tear on every organ and system of my body in a way that makes it increasingly dangerous and disabling. I don’t want to get into the gory details, but this disease is also autosomal dominant, again implying that any children my husband and I may go on to have possess a 50% chance of inheriting the primary gene mutation that has caused me so much pain. My situation, though, is different – my illness doesn’t come with a guaranteed death sentence or even a guarantee of severity. Some people who inherit this gene abnormality experience only musculoskeletal problems, and never face the secondary problems I have dealt with. Even so, there is no cure, and the only treatments are those that deal with the tangible problems caused after they occur. Of course being careful to always get enough rest, be very, very cautious with the amount and type of activity I undertake, and trying to keep my body otherwise healthy and well-taken care of can prevent unnecessary damage, but in the long run, it’s really just about dealing with the setbacks as they come, and constantly adjusting my outlook and lifestyle to each day’s new reality. My life is nowhere near normal, and instead it is filled with medical appointments, physical therapy, IV infusions, medication schedules, fatigue, and illness. However, it is also filled with an above-average appreciation for every single day and every single beautiful experience. Actually, I met my husband because of my illness, and stumbled upon my current career path in a similar manner. It’s taken me a long time to get to this place, but I think now that I no longer wish I had been born healthy – I’m grateful for all of the amazing knowledge, people, and experiences I wouldn’t have had in my life if my fate had been different. It becomes a completely different issue, though, when thinking about whether I would want my child to experience this life.
In a way it’s funny that I got so upset about the conversation in the café, since I haven’t even totally made up my mind about how or if I will go about having children. While traditional adoption isn’t an available option for me because of my illness, something like embryo adoption could be. I think what really upset me, though, is actually an extension of what bothers me with the argument against a woman’s right to choose. It’s the fact that people in this world want to take away my choices and dictate what the world looks like and who’s alive in it. In some ways it doesn’t just feel like they’re trying to limit my reproductive choices, but that they’re also saying that my life, somehow, is less desirable and less worth living than a healthy person’s life. Not to mention all of the ailments that strike out of the blue and are passed down from perfectly healthy parents. In fact, my own illness is the result of a de novo gene mutation – basically my parents had perfect genes that mutated somewhere along the path of procreation. There are no genetic screening tests for these illnesses, so there literally was no way of knowing that I would be so afflicted. But honestly, even if they had known, I wouldn’t have wanted them to decide not to have me based on the notion of sparing me pain. I’m glad I’m here and that I am the way I am, and I don’t believe that my life is any less wonderful or less productive than that of someone with no health problems. I believe that I have the potential to achieve great things in my life, and anyone who knows me knows that my illness won’t even come close to stopping me.
A friend of mine who has a progressive illness is currently expecting a baby. A baby who is genetically hers and her husband’s but is being carried by a gestational surrogate. Her illness is presumed to be recessive, meaning that it is believed that her husband would have to pass on the gene as well to create it in their child, which is unlikely, but still possible. I have never for one moment questioned her desire to be a mom, and while I believe that her child will be perfectly healthy, if (God forbid) he or she does have health problems of any kind, I know that no one in the world is better equipped to handle it or will take better care of that child than my friend and her husband. In a way, adults with chronic illnesses are uniquely qualified to take care of children with illnesses, because they already have established and competent systems of doctors attuned to the specific problems presented, they know what to look for, and they understand the care and attention necessary. I just wish that people would take these things into consideration before they make such harsh judgments.
I'm sorry this post is so long and I'm doubly sorry if it seems like a lecture, but I just want to encourage discussion and consideration of the other side of this subject. If i encourage even one person to take a second look and to be more tolerant and more open-minded, then this post has more than done its job. What I really want, in the end, is a choice - the freedom to make my own decisions without fear of judgment. Doesn't everyone deserve that?
1 comment:
I'm the one advocating parenting licenses, but the potential for a disease or disability is not enough to forbid a person from having a child.
Like you said, there is always the potential for a disease or disability or any weird mutation, no matter how healthy the parents are. These things happen.
There does come a point where the parent's health can affect the parent's ability to care for the child, but that point is pretty far down the line. And if there are two parents involved, then one parent being sick is not enough to deny those parents the right to have a child. Childbirth itself has a high potential to kill the mother, no matter how healthy she is. You never know what's going to happen, and there's no way to predict it.
Many perfectly healthy people are horrible parents, because they either didn't want that child or don't know how to be parents.
I've read a few infertility blogs lately, and in a way I'd be willing to say those women are going to be better mothers than your average fertile mother, because they've had to fight for it. Even before getting to that point, they've had to think about it, and what they are willing to go through to get that child. The same applies to people in your situation -- you've probably thought about whether or not to have a child much more than most women (even women who plan to have children and do give it some thought), because there are so many more issues to consider for you. Right off the bat that makes you a better parent than those out there who choose to have a child because "my clock is ticking" or "everybody else is doing it" or "it would be fun."
(PS - I could have sworn I added your blog to my Google Reader subs, but I hadn't! I'm catching up on your posts slowly...)
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