I've tried googling Paula's story for more information, but all I get is re-re-re-re-re-postings. It's ubiquitous, but has no visible source. Who is Paula? Who is the doctor who, Paula intimates, she sued and had divested of his medical license? Where is this family, so desperately in need of help, but shrouded in a haze of mystery that while keeping out prying eyes and ugly words, also keeps out any offers of help?
I will not edit Paula's story, but will let it stand on its own:
My husband Alan and I found out that I was pregnant in late April of 2009. This was a complete accident. Due to the fact that we were both Tay-Sachs carriers, we were going to have a child via IVF. But what was done was done. I scheduled an appointment for a Chorionic Villus Sampling (CVS) for as early as possible (10 weeks). Words cannot describe how relieved we were when the doctor told us that our child was fine.
My pregnancy was an easy one. No complications, plenty of happiness. My husband, my in-laws, my daughter Sophia (from a previous relationship), and the rest of my friends and family were overjoyed. My parents had passed away years before that, but I know they would have been happy too.
I gave birth to my son Elijah on January 15th, 2010. Everything was perfect until Elijah was six months old. He wasn’t reaching the developmental milestones he should have been. My husband became concerned. His brother died at the age of four from Tay-Sachs. Alan remembered watching the disease progress. He said that this watching Elijah was like “deja vu”. I didn’t think much of it, but I figured it was better to err on the side of caution. I made an appointment with an opthamologist to look at Elijah’s eyes, which is a way of diagnosing Tay-Sachs.
My world came crashing down around me when the opthamologist told me that Elijah had “cherry-red spots” in the back of his eyes. That meant that the doctor was wrong. My son did have Tay-Sachs. Furious, I went back to the first doctor and told him what I had found out. I know he was pro-life, and I’m pretty sure he lied to me so I didn’t have an abortion. It’s also possible that he made a mistake. All I know is that he no longer can practice medicine and I recieved a lot of monetary compensation. However, it’s not worth it.
Alan had a lot of issues in his past. After the death of his brother, he started using drugs. He got into methamphetamines by the time he was 15. He got clean when he was 21. Upon hearing of Elijah’s illness, he began using again at the age of 30. I tried to get him help. I wanted to send him to rehab, but he wouldn’t listen to me. He purposely overdosed about a month after Elijah’s diagnosis. His suicide note read “Watching my baby brother die was too much. I can’t watch my son. I’m sorry.” My husband, the love of my life, is dead.
His in-laws are incredibly distraught. They had to bury both of their children, and now they’re going to have to help me bury their first and last biological grandchild. Their depression caused them to lose their jobs, which lead to them losing their house. They live in my house now, but I hardly see them. They only leave their room to eat.
My seven-year-old daughter is so confused. She knows what’s happening, but she wants to know why. I wish I could tell her, but I don’t even know myself. Every night, she holds Elijah in her arms and weeps. She begs him not to leave and tells him how much she loves him. She showers him with kisses and won’t let him go until I put her to bed. She was too depressed to be in school, so I have teachers coming to our house so she can be homeschooled. She’s in therapy three times per week. I’m doing everything I can for her, but it doesn’t seem like enough.
Elijah needs constant care, so I had to give up my job. At first I had a nurse taking care of him, but as his disease progressed, I kept having to leave work for emergency visits either at home or at the hospital. I have more than enough money to stay afloat, but what good is that when I’m home pretty much 24/7 watching my son slowly die.
This is the only time in my life that I’m glad my parents aren’t around. I don’t want them to see this. It’s too painful.
Elijah has is the worst of all. He’s blind, deaf, and paralyzed. He cannot eat, so he needs to be tube-fed. He has seizures every day and is severely brain damaged. He cannot laugh or smile. My baby boy has no quality of life. If I was made aware of his illness, I would have had an abortion. At only 12 weeks, he wouldn’t have felt a thing. Now pain is all he knows and feels. I expect him to pass away within the next few months.
So, pro-lifers, tell me, what good came out of Elijah being born? A few months of happiness? Guess what, it wasn’t worth it, especially not for Elijah. How can you justify me being forced to put him through this? The love of my life is dead, my in-laws will never see their family carried on, my daughter is being robbed of a happy childhood, my mental health is deteriorating every passing minute, and my son is in agony. All of this could have been prevented by an abortion, but my “doctor” manipulated me so I wouldn’t have one.
Don’t tell me that Elijah’s birth is a blessing or that this experience will make me stronger. Don’t tell me that fetuses can feel pain. Not at 12 weeks they can’t, and every credible medical professional agrees. And please, for the love of God, do NOT tell me how much you “care”. Usually, you only care about the fetus. Not the mother, not the family, just the fetus. But in my case, you don’t care about any of us, especially my son. You just want me to live MY life based on YOUR “moral” standards.
Classic Infantile Tay-Sachs is an utterly devastating disease; its very existence is an affront to humanity. The fact that such a thing happens to innocent children is enough to make one question a belief in God. So let's just get that out of the way. Even the bright side -- if there can be said to be one -- is in a way part of why Tay-Sachs is so devastating: A happy, seemingly healthy child will begin to inexorably deteriorate and there's not a damned thing the child's helpless, agonized parents can do to stop it.
Brushing this off with platitudes about every life being worthwhile, about adversity making us stronger, etc. is an obscenity.
To face a prenatal diagnosis of Tay-Sachs and flee from that impending horror to the nearest abortion facility isn't selfishness or cruelty. The closest thing outside abortion I can compare it to would be to imagine a father in Nanking as the Japanese invaders approach in 1937. He knows what's coming. His pregnant wife and 6-year-old daughter will be gang raped before his helpless eyes. His wife's belly will then be slit open and her unborn baby torn out just to compound her anguish and agony as she dies. If the brutality of the rape doesn't kill his daughter outright, she'll be used for bayonet practice. The man might be forced, himself, to perform sexual acts upon his precious little girl before he, too, is tortured to death. Who could dismiss as selfish or cruel a man facing that grim reality who, upon hearing the approaching army and the screams of the victims, quietly pulls out a pistol and shoots his wife and child before turning the weapon on himself?
Of course, the plight of our hypothetical Chinese father only serves to illustrate that it's possible for a parent to feel utterly trapped into killing a beloved child in order to spare that child from unspeakable suffering. It doesn't reflect the reality of a Tay-Sachs diagnosis.
There is no halcyon time between the sound of boot-steps and the onset of the torment for the Chinese family. In shooting his family, the Chinese father would not be depriving them of any happiness. There is nothing left for them to experience but terror and agony. The same is not true after the Tay-Sachs diagnosis. Along with the certainty of deterioration and death is the certainty of love and smiles and laughter and snuggling, of sunshine on the child's face and warm milk in his belly and everything else that brings joy in a small child's life. Aborting the child averts the cruelty of the disease, yes, but it also robs him of everything. Absolutely everything.
Would it not be better to be looking for an option that allows the child -- and the family -- to have the good while mitigating the bad as much as possible? Would it not be better to provide families with love and support that would enable them to cherish every possible moment of love and happiness? Would it not be better to strive for treatments and cures? And for the families who simply can not cope with the ordeal, would it not be better to place the child in a setting where his or her daunting needs can be met? Would it not be better to offer adoption, foster care, and hospice care?
Even with the best of help, Tay-Sachs is a hellish disease. I can not stand in judgment of the parents who fled to the abortionist. There is no greater pain than for a parent to witness the suffering and death of a child. I can not, in this case, even stand in judgment of the abortionist. But, that said, I can stand in judgment of the society that, by making abortion available and remaining sanctimoniously nonjudgmental about it, pretends to have done right by those parents and their innocent, doomed children.
It's the epitome of cruelty to leave families feeling trapped between two nightmare scenarios, between watching a beloved child suffer and averting the suffering by also averting any chance of life at all. And it is utterly inexcusable to use the anguish of those families as a smokescreen to hide from public awareness the abortions perpetrated because the child will have a cleft lip, or will interfere with career plans, or will be the "wrong" sex. Did I say, "inexcusable?" Excuse me: I meant "despicable."
Paula is in a world of pain, pain that I will not belittle by even pretending that I can fathom it. She can lash out at me all day and I'll stand and take it whether I deserve it or not.
But -- and at first this may sound cruel -- we can not base public policy on the cries of those in pain. If we did, there would be no such thing as a suicide hotline; we would just kill the depressed because in their pain, death is what they are crying out for. Then we would be left to deal with the anguish of those they've left behind, and we'd likely be carrying out another round of shooting depressed people.
Now imagine a criminal justice system that simply carried out the wishes of the agonized families of murder victims. What then, as well, would we do with the pain that was then inflicted on the loved ones of the suspects?
Public policy must be based on principles, on a sound footing of human rights and fundamental justice. One person's pain can not be justification to deprive another person of property, liberty, or life. To do so is to deny the other person justice. As undeniably difficult as it is for Paula to struggle in the shadow of Elijah's illness, his life is not hers to take away. We can not give that right to another. Not even to that person's mother, and not even if we go back in time to when that person was very, very young and very, very small.
Sometimes, life just sucks. But we do not improve upon it by adding injustice to the mix.