Recently I had a friend contact me about raising money for the Cystic Fibrosis Foundation. I personally have a chronic respiratory ailment, though it rarely affects my daily life. The reason that my ailment is not much of a problem in my life is because medical science spent truckloads of money trying to find a cure in recent decades. Failing that, they sought and succeeded to make the illness manageable. So, this request to help raise money to cure a respiratory ailment is one for which I have a personal affinity. Plus my friend has such a good heart. It should have been a no-brainer for me to open my wallet and hand out a donation.
However, in her attempt to both be honest and move potential donors to compassion, she revealed that the family in whose honor she is raising money has two children with cystic fibrosis. Two children with cystic fibrosis? Two?
I know a little about cystic fibrosis. One of my friends from the past works as a respiratory therapist. I personally *love* respiratory therapists, as their appearance in the ER when I was a child were a signal to me that I would be able to breathe again soon. If you know a respiratory therapist IRL, give them a hug for me!
Once when I was telling her how much I appreciated her profession, I followed up with a question about what was the hardest part of her job. I was expecting an answer like, "when a kid throws up in response to the steroids". Instead, she said that caring for her CF patients was the hardest part. It is hard because she is compassionate, kind and loves children. It is hard because she KNOWS her CF patients will someday die, drowning on their own mucus secretions, and in the end, she can't stop this from happening.
What a horrible death. At the time, I didn't know what caused CF, mostly because no one in my family has CF and I had no training whatsoever in the medical field. Since then, I have come to learn that CF is a genetic disorder, and while it is not curable, it IS preventable. A quick google search turns up this:
Gene that causes CF identified
This was in 1989. These children my friend loves are now in junior high and high school, so born after 1995. Plus I am assuming they are more than a year apart, so wouldn't they have known their first child had CF before they conceived their second child?
Since science has known that it takes two recessive genes, one from each parent, for a child to develop CF, since 1989 and these children were conceived after 1989, what gives? As a person who has faced the terror of almost dying from a respiratory condition, it seems horrendously cruel to play Russian roulette with the second child's life by conceiving again without genetic testing or IVF to prevent another child from being born with CF.
Which is where my moral dilemma began. You see, I have known more than a few incredibly selfish mothers who were more interested in their own righteousness (as one of God's breeders) than in the health and well-being of their children. I know a family with three, yes three, Down's Syndrome daughters conceived by a young mother. They were "trusting God with their wombs" and so even after the first rare genetic abnormality they kept getting pregnant. When it happened a second time, they still did not stop getting pregnant. Their third child was also born with Down's, which is really rare in young mothers. And still they continued to roll the dice and get pregnant! Their fourth child, a son, was normal. He is a wonderful human being, but what a burden that kid will bear the rest of his life! His mom developed breast cancer shortly after his birth, so no more children. She beat it once, but succumbed after it returned a second time. The care of his three older sisters now rest on her only son's and his father's shoulders. Once his father dies, it will all be on him. But of course, it is all God's will, right?
Another one of these hypocritically "pro-life" moms posted on facebook a press release heralding the Santorums as heroes for mom's aging eggs* producing a Trisomy-18 child. There is nothing heroic about continuing to get pregnant after thirty-five when you already have children! The ONLY reason a woman would do that is in some misguided attempt to "fulfill God's will", i.e. seek her own righteousness and glory in being pregnant- AGAIN. The more children she has, the holier she can tell herself that she is. No matter that she is gambling with someone else's life! If she has a child with a horrific genetic abnormality, it's God's responsibility, not hers! (These same people no doubt use seat belts, take antibiotics, and wouldn't skydive without a parachute, trusting that God's will be done. They won't take those sort of foolish risks with their own life, but with a child's? No problem.)
Are the Santorums heroes for rushing to the hospital each time their Trisomy 18 child needs to be admitted? Hell NO! They are goats for cursing her with this disease. They willfully and knowingly continued to get pregnant when it is clearly proven that older eggs are at much higher risk for producing people with this torturous disease. They want kudos for this?!?!?! YES THEY DO! They think they are heroes for their reckless procreation.
Which is why, when I read that a family has two children with cystic fibrosis, I get angry. Those parents are not clueless about what causes cystic fibrosis. All high school biology books teach about Punnett squares. It's easy to see that if you have had one CF child, there is a 25% chance your next child will have it too, and a 50% chance that they will not develop the disease but will themselves be carriers. There is only a one in four chance they will have a child not affected by the CF gene at all.
Would you put your child on a roller coaster that kills one out of four riders? How about buy a car that explodes in ball of flame 25% of the time? Feed your child a snack that causes every fourth child who eats it excruciating pain followed by a slow death? No? Neither would I.
That's what took me so long to donate. I don't want to promote a religious culture of reckless procreation. I can't imagine getting pregnant again with the same father after giving birth to a child with CF, not unless we used IVF to eliminate the possibility of having a child with CF. And since IVF sounds really creepy to me (Long needles through my abdomen? I don't think I could do it.), I would probably adopt if I wanted more children. But maybe I'd just stop, and pour my life into helping my sick child and raising money for CF research.
I went ahead and donated. My friend loves this family, and that is enough reason for me to give. These children are already here, and I honestly and sincerely hope a cure is developed in their lifetime. And hey, at least they stopped at two children, right? If they were QF, they might have gone right on having more and more children.
But still, we need to stop the reckless procreation. We need to stop the people who advocate reckless procreation. God is not honored by your denial masquerading as faith. God is not honored when you make stupid choices and take reckless chances and excuse it with some religious dogma. No outsider is impressed with anything but your disregard for the lives of your children, and that is not a favorable impression.
How can we stop this reckless procreation without shaming the mothers who were duped by the lame religious arguments? Those mothers don't need shamed, they need empowered to do what's right. I don't know. If you or someone you know fits this description, I do not intend to shame you for having been deceived.
We do need to expose the people who conned you, though. And we do need to send a clear message that most of America ain't buying what they're selling.
STOP the reckless procreation. STOP blaming God for the choices people make. And for God's sake, STOP gambling with other people's lives in a sad attempt to impress the world with your faith.
No one is applauding.
*"Advanced maternal age is a risk factor for Trisomy 18." A quote from here: Older mothers have higher risk of genetic birth defects . How bad is Trisomy 18? Horrible, a fate no one should choose for any child.