The Value of a Life

I used to be staunchly pro-choice. Politically, anyway. In the past decade, I’ve taken to describing my views as “politically pro-choice, but personally pro-life.” Because I’ve long known that I couldn’t personally terminate a pregnancy, but I’ve never felt it was my place to tell someone else what she can do with her body and her child. And then there’s that whole scenario where incest and rape come into play, and I’ve always felt that it’s not my place to force a woman to carry a child under circumstances like those. So although in my own heart I’m pro-life, I’ve never officially been able to make that leap politically.

But then I had the baby that many would’ve chosen to terminate. And my views on the value of a life changed.

The game changes when you give birth to a child who somewhere between 60 and 90 percent of women would’ve chosen to terminate, if given the chance. (Some statistics say that 90 percent of women report that they would terminate a pregnancy if the fetus was found to have Down syndrome, but other statistics show the rate closer to 70 percent or thereabouts. Statistics…never really can fully trust ’em. For the sake of argument, we’ll say 60 to 90 percent.) The protective instinct that is present in women? I have it for both of my children, but it is far more profound with Sam. No matter how much potential he has, the fact is that he came out of the womb an underdog, and so my natural urge to protect my son is exponentially greater for him.

I’m not a hero here. I didn’t have a prenatal diagnosis, so I didn’t stand up to disapproving doctors and others and say, “No, I would not like to schedule my termination appointment. This is my child, and he deserves a chance at life.” I’d like to think I would’ve said that, but because it wasn’t my situation, I can honestly never know. What I do know is how it feels to love your child with every fiber of your being and to realize that a large chunk of the population would’ve chosen to have him never exist. It hurts. At least for the first three years. Maybe it stops hurting at some point, but at this point, it’s still a raw wound for me.

Let me clarify something, though: These faceless people who think Sam shouldn’t have existed? These are not people who know Sam or have even so much as met him after he entered the world on February 4, 2012. I’ve yet to meet anyone who isn’t charmed by Sam, and I believe there are a great many people who would happily snatch him from my arms and take him home to love on him forever, because really, he gives the best hugs and has the most incredible smile and the sweetest disposition. He is just a true joy and an amazing spirit.

And I suppose it’s possible that people have met Sam, been gracious, and then privately said, “Wow, better her than me. I couldn’t handle that. I’m so grateful that my children were born typical.” But honestly, I kind of doubt it. I think most people see the joy Sam has brought to our family, and they realize that the ideas they might’ve had about people with Down syndrome aren’t terribly accurate.

So it’s not like I think anyone is walking around thinking my child specifically shouldn’t exist. This is more about people who hear “Down syndrome” and immediately decide they need to terminate. Or, worse, people who think Down syndrome should be eliminated completely. (I’ll get back to that in a moment.)

I don’t blame people who think these things. Not one little bit. Despite my “personally pro-life” stance, I don’t think any less of anyone who has terminated a pregnancy. I know multiple people who have, and I don’t for one second judge them or think less of them. Their circumstances are not mine, and their lives are not mine to dictate. I think people generally do their best with what they’re facing and their circumstances.

Who I do blame are “experts” who provide inaccurate information to expectant parents of babies with Down syndrome. Some of them are just uninformed—perhaps they learned about Down syndrome years ago, when more babies were dying from heart defects and children were being surrendered to institutions. Perhaps they honestly don’t know about all of the advances that have been made in the Down syndrome community. We need to teach these people the new reality of Down syndrome, and I’d like to think that if we did, they would cease misinforming prospective parents.

But in some cases, I think it’s outright negligence. Perhaps they haven’t even bothered to learn more about Down syndrome, even though it’s a situation they may run into. I’m thinking here of people in the medical profession who really should take ten minutes and learn what’s new in the world of Down syndrome, but don’t. It’s a case like this that currently has me upset and is what spurred me to write this post. At best, I think there’s negligence going on here; at worst, downright lies used to try to promote a product.

I’m talking about Fertamax, which has been created by some group of “experts” called Pregmama. I learned about this last night, when a request for funding popped up in my Facebook feed. When I looked into it further, I was appalled.

Here’s the short of it: Pregmama claims that Fertamax, which is beginning its first human clinical trial, can eliminate miscarriages, infertility, and Down syndrome. And we should give them some money so they can continue their clinical trial!

Stop right there. Miscarriages? We’re talking about the death of a fetus here, so I can get on board with research into preventing that. Infertility? That’s kind of similar, in that there can be no live fetus if a couple is infertile. I can get on board with that. Down syndrome? That’s not the life-or-death situation we’re talking about with miscarriage and infertility. Yes, the miscarriage rate is much higher when a fetus has Down syndrome, and yes, there can be life-threatening health issues that go along with Down syndrome…but many, many healthy babies are born with Down syndrome every year. So why would we “eliminate” those healthy babies?

I read more about this product (if you wish to do the same, click here for the website), and it seems that basically, the drug weeds out aneuploidic (in other words, low-quality) eggs. So if you’re a woman and you ovulate an egg that isn’t high-quality, that egg will essentially be destroyed, and thus you won’t conceive with that egg.

Science-wise, that’s kind of interesting. The drug is able to correctly target a weak egg? Somewhat fascinating. But ethically? It troubles me greatly. It’s a little too close to eugenics, designer babies, and playing God. Despite not being a particularly religious person, I do have a strong belief that when you choose to allow yourself to conceive a child, the child you conceive is the child that is meant to be. So from that standpoint, weeding out the potentially troublesome eggs seems rather God-like, and I’m uncomfortable with that.

And from a long-term standpoint, I worry that if we do have this ability to weed out the “bad” eggs and determine that we will only conceive with the “good” ones, there may eventually be government or healthcare involvement saying that if a woman chooses to carry to term a fetus with a known abnormality, that child will not be offered healthcare or government services. Think I’m paranoid? This scenario has been discussed, at least off the record, and there are people who think things should work that way.

But let me get back to Pregmama. I haven’t thoroughly combed their entire website, but even upon scanning several pages last night, I found misleading and downright incorrect information about Down syndrome. Let’s start with the baby with Trisomy 21 (aka Down syndrome) shown on the main page. He looks sickly, with a bluish cast to his eyes and lips. Yes, some babies with Down syndrome are sickly at birth, but not all. Sam was a beautiful, rosy baby, and I’ve seen enough newborn pictures of kids with Down syndrome to know that many are born beautifully healthy. So using a picture that shows a worst-case scenario is somewhat misleading. And right below that little sickly-looking guy is a picture of a lovely, robust little girl labeled as “Normal chromosome number.” See the difference? If you use Fertamax, you can have a lovely, healthy little girl like this one, and not a sickly baby like the one above! Misleading at best…

And then there’s this statement on their main page: “[T]risomic birth defects cause profound suffering for parents [who experience] the rearing of a disabled child.” Not “can cause,” but just “cause.” Again, misleading at best. Ask a hundred parents of children with Trisomy 21 whether they are suffering profoundly, and I would bet that at least 98 would tell you no. I know a lot of people who have children with Down syndrome. A lot. My network is pretty huge. And I can tell you that the vast majority do not feel as if they are suffering, much less profoundly! Sure, there are difficult times, but on the whole, parents of children with Down syndrome seem to be the furthest thing from suffering profoundly.

You know who suffers profoundly? Parents whose children with Down syndrome have died. There have been several this past week, in fact. One was born on Christmas Day and lived just an hour or so. Another was born this year and died abruptly of cardiac arrest a few days after Christmas. And yet another was 18 months old and died unexpectedly during a bone-marrow procedure that was being performed because doctors suspected leukemia. Ask any of those parents whether they suffered profoundly as a result of having a child with a trisomic defect, and I think they will tell you no—that instead, they are suffering profoundly because their beloved child died.

If you go to Pregmama’s Products page, you find yet another misleading bit of information. They describe Down syndrome in this way: “Trisomy 21 [is] usually miscarried but can result in a stillborn or live born.” Again, misleading at best. Yes, miscarriage is more common when a fetus has Trisomy 21, but that doesn’t mean it’s “usually” miscarried. “Frequently” might be a better term. Once again we run into fuzzy statistics, but what I found indicated that after the end of the first trimester, the likelihood of a miscarriage due to Down syndrome was around 32 percent. Miscarriage is more likely than that in the first trimester, but that’s true with any pregnancy—first-trimester miscarriages aren’t a particularly unusual happening regardless of chromosome count.

Honestly, the entire Pregmama website is amateurish, and I found myself amazed that the Pregmama team hadn’t put more time into creating a professional site with accurate information. And I was even more amazed that in the Facebook post soliciting donations, they indicated that they are affiliated with Johns Hopkins. What? How on earth would an organization like Johns Hopkins be backing such a venture? I was skeptical.

In doing more poking around, I have a sneaking suspicion that their affiliation with Johns Hopkins is tenuous at best. The Pregmama teams appears to consist of two businessmen and one scientist. A fellow mother of a kiddo with Down syndrome works with Big Pharma, and she did some poking around and said that this is indeed a legitimate therapy that is entering clinical trials, but it’s a tiny operation with very little funding, and she sincerely doubts it’ll ever make it past this stage. However, she said there are other companies with similar mindsets of “eliminating Down syndrome,” and at least one of them is large and well-funded. That’s troubling because since Down syndrome is present in the egg and thus is present even before conception (that is, the chromosomal abnormality is present in the unfertilized egg), there is no way to “eliminate” Down syndrome other than by terminating the potential life. There is no “cure” for Down syndrome, and there likely never will be, since it affects every single cell in the body (unless the person has mosaic Down syndrome, but that is fairly uncommon—most have Trisomy 21, which affects every cell). So again, the only way to “eliminate” it is to eliminate the life.

And so, I’m brought back to my place as the mother of a child who some think should have been “eliminated.” It hurts. It’s not okay. And it’s a slippery slope, because what’s next? Should we eliminate people with autism, too? People with minor birth defects?

I’m all for research, but let’s concentrate on researching therapies that can improve the quality of life for people living with Down syndrome. Not that they have a poor quality of life, mind you—the vast majority are pretty darn content! But I’m sure even those who are content wouldn’t mind struggling a little less. Is there a way to improve muscle tone so our kiddos don’t have to work so darn hard to learn to walk and to eat? Great, let’s research that! How about treatments for Hirschprung’s Disease, which isn’t entirely uncommon in Down syndrome and which can be fatal in some circumstances? How about treatments for apraxia of speech, so people with Down syndrome can actually speak to the people they love? This is where I want to see research go—not down a rabbit hole of “how can we eliminate this from the population?” That sounds way too close to a period in European history that I think all of us shudder when we think about.

Pregmama may be just a little blip on the radar that never makes any waves, but it has reminded me of one thing: how very glad I am to have accepted a position as medical outreach coordinator for our Down syndrome association. Because the only way to combat gross misinformation like this is to provide people with the real information about Down syndrome. I’m really glad that I’ll be able to do that, in my own small way. And I’m glad that there are larger organizations working on this, too, like Down Syndrome Diagnosis Network. Slowly but surely, I hope we can change and improve the conversation about Down syndrome so that it’s no longer seen as something that should be “eliminated.”

Two days old and bidding farewell to the hospital. I see nothing here that should be "eliminated." Looks like a pretty perfect baby to me!
Two days old and bidding farewell to the hospital. I see nothing here that should be “eliminated.” Looks like a pretty perfect baby to me!

 

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