Rick Santorum and Trisomy 18: Should he be campaigning?

Dec 05, 2011

Post reporter Melinda Henneberger was online to discuss her recent article about GOP hopeful Rick Santorum and his seriously ill daughter , Bella, who suffers from a genetic disorder called Trisomy 18.

While Santorum and other politicians with ill family members often face backlash on the campaign trail, Santorum's daughter's condition has made health care a personal and prominent platform for his campaign. But should Santorum be on the campaign trail?

Half of all children with the chromosomal anomaly, which is more common in girls, are stillborn. Of those who survive, only one in 10 makes it to their first birthday.

Hi, I'm Melinda Henneberger and I'll be taking your questions on my story about Rick Santorum and his daughter Bella. Eager to hear your thoughts as well.

Hi, Melinda. I keep reading these pundits who are talking about Santorum and the common refrain is, "he seems like a strong conservative so why is he polling so low, I just can't understand it." It seems so disingenuous... we can all understand it, can't we? All my friends seem to know (I'm in my 30's). SNL told us why in a skit last fall. It's because people who Google him don't like what they see. The Daily Show talked about the Google problem too. But what we read in the Post is the idea that it's a daughter with Trisomy 18 that is turning off voters. Ummmmm... I don't think so. Isn't the focus on Bella kind of missing the elephant in the room? Or is the Google problem just too icky to even touch?

It's icky and also despicable, but Republican primary voters wouldn't base their choice on that.  If anything, I'd think being the victim of such a low prank might win him sympathy.

I think ambition is blinding and comes first with Mr. Santorum. Seems that he has taken her on the road with them - as he described an evening when he thought she was going to die three different times. Call me sexist - but I thought Sarah Palin should have been home with her special-needs son, John Edwards should have been more considerate to his cancer-sticken wife and that Rick Santorum shows utter disregard for the comfort of his daughter and wife by dragging them through the 99 counties of Iowa.

All presidential candidates are ambitious, and these campaigns do take a toll on all families. I did wonder whether a male candidate would have been criticized in the same way Sarah Palin was, but now it seems that the answer is yes as Rick Santorum is getting a similar reaction. He struggles with the right answer himself, but when I talked to him I thought he came across as a heartbroken father trying to give meaning to a tragic situation. As for John Edwards, it was Elizabeth who wouldn't hear of him suspending the campaign. But that he should have been more considerate is definitely true!

I think the bigger issue is that Santorum's daughter can get all the healthcare she needs because the Santorums have access to health insurance. And Mr. Santorum is campaigning to take the access to healthcare away from the working class and poor. That makes him either very hypocritical or very cruel.

He doesn't see it that way, of course.  He says that in countries where there is socialized medicine, there is less care for those "on the margins of life," like his daughter. But the Affordable Care Act mostly expands access through private insurance. And under the bill, insurers can't deny coverage to people like Bella who have a preexisting condidtion or disability.

My husband and I terminated a pregnancy upon a positive diagnosis of Trisomy 18. It really is just about one of the most heartbreaking things parents can go through, because it doesn't end well, no matter when it ends. While we chose the option of terminatng the pregnancy, I do have a great deal of respect for the Santorums, as well as any other parent who does what they are doing. For the most part, I've experienced an unspoken understanding that parents in this situation don't judge each other for the choices they make. Since Santorum is adamantly pro-life, did you sense any sympathy for parents who may choose to terminate a pregnancy after a diagnosis of Trisomy 18?

Thank you so much for writing in, and I'm very sorry for your loss. We didn't talk about his feelings about parents who make a different decision, but I certainly appreciate your respect for his decision and situation. Someone else told me about a child in his family with Trisomy 18 that led to tragedy beyond the death of the child, and this is just such an impossibly hard circumstance that there is no right answer beyond compassion for all involved. Again, thank you.  

I would think the questions would be on a case by case basis. Is the ill family member getting appropriate care, or being neglected? Are the rest of the family members able to rise to the occasion, or is the stress of being caretakers too much for their situation? So, I would have to ask what is the situation like for the Santorum family? Are they doing OK with dad on campaign?

Bella is definitely not being neglected; her mother spends full-time caring for her. He very forthrightly said his kids who were old enough to have an opinion were "all over the map" on whether he should be doing it.

Hopefully, the Santorums have good health insurance and will be able to get quality care for their daughter. However, 50 million Americans do not currently have health insurance, and if they have a child with Trisomy 18, they would not have equal access to the care the Santorums expect for their own family. It seems that Mr. Santorum has reached an illogical conclusion in his opposition to the new law that will for the first time make health insurance more affordable for those who currently are unable to afford it. What is his rationalization for this inconsistency?

I can't say because he doesn't see the law that way. But the evening I heard him speak in Iowa, he told a story about the law that might answer your question.  He said that he learned the real motivation for health care reform in a conversation in the Fox News green room. It was right before the law was passed, and he'd run into the pundit Juan Williams, and asked him something like, "What are you guys thinking trying to ram through that law, since the public opposes it?" and according to him, Juan said that he'd just been with someone from the administration who had told him that "people love entitlements and once this passes we'll get them hooked." Williams is not, of course, part of the administration, and I cannot imagine anyone inside the White House talking or thinking about the law that way. But the audience loved the anecdote, and he repeated it to me in the interview as proof that the intent is to get us hooked and thus rob us of our freedom in a way that will change America forever.

I don't know much about this condition. What is the actual cause of death, typically? Especially, what is the actual cause of death in children who have beaten the odds and made it to Bella's age? And has there ever been a Trisomy 18 child who has made it to adulthood?

He said that her biggest challenge is that she often has difficulty breathing, and even a cold can be life-threatening. The condition causes all sorts of developmental problems, but some people with Trisomy 18 have lived to adulthood, yes; my understanding is that some have lived into their 30s.

Santorum's daughter has a particularly heartbreaking health situation. But aren't there other parents on the campaign trail who have children with various illnesses? I'm guessing that staff members and reporters and others in the campaign machinery have families who are left at home to deal with various things. Perhaps this is a good argument for shorter campaigns?

Great point; I'm sure there are others with ill spouses or children on the trail, and yes, maybe it is another argument for shorter campaigns.

Sarah Palin got a lot of criticism from the left because she dared to be a governor and a VP candidate despite having a child with Downs syndrome. In fact, your own Sally Quinn -- a millionaire with several homes and live-in help -- criticized Palin for daring to have a job. So now another conservative candidate, albeit a father, is getting the same treatment from the left. It's pretty obvious to me that this is simply an excuse to criticize those parents who choose not to abort their less-than-perfect babies. Palin and Santorum are an affront to every person who supports abortion and chooses to look away when abortion is chosen over the inconvenience of raising a disabled child. Guilt is behind the criticism, not concern about the child.

That's interesting. But don't you think parents criticize one another's choices all the time, in ways that have nothing to do with politics? I think we often see choices different from our own as a reproach, and respond accordingly.

Does having a special needs child (Sarah Palin) or a seriously ill child (Santorum) create any kind of buffer zone for the candidate? Is it harder for the other candidates to be critical of someone who has such a family issue?

That's a good question. I think Santorum is spared criticism from his rivals not because of his daughter but because of his standing in the polls. It certainly did not seem to buffer Palin from anything.

Why not mention Joe Sestak, Melinda? His daughter is sick too, yet, because he's a Democrat, no mention was made about it last year (or in your article), and whether he should be campaigning. Also, the press (with the exception of the Nat'l Enquirer) was in love with John Edwards - unless you can cite specific examples, try to avoid the use of weasel words.

She was in remission when he ran -- which I just learned by looking it up, and it is a trusted source because it was on Politics Daily, which I used to run! But if I'd thought of it, yes, I would have added it. Don't know what 'weasel words,' you're referring to, but this doesn't seem like a partisan matter to me.

We have had Presidents with seriously ill family members: Abe Lincoln managed to preside during great personal family challenges. I should believe that most people are able to work and handle family pressures. Indeed, a President or someone with the financial resources as Rick Santorum should have more advantages than most Americans have.

That's true. Elizabeth Edwards often cited Lincoln and said her husband would be a better president because he'd faced true hardship, including the death of their son Wade.

I am 100% pro-choice... and almost completely agree with the Stay at Home poster above. If people want others to stop judging (and legislating) their personal choices, we should back off Santorum's and Palin's. Don't vote for them if you don't like them, but they have the right to make their own decisions about their own families. Unless dragging the sick kid all over the country ends up hastening her death. Then he should be criminally responsible - the same way he feels about those who opt for abortion.

Agree.

The reason why Rick Santorum is not doing as well in the polls as some should think is because money talks, and Santorum is doing relatively poorly in the fund raising. Otherwise, he would be a conservative Republican dream: he is basically a true conservative with a fairly consistent conservative record in his political career, he is photogenic, and he is fairly good looking. Would you agree that it is his lack of funds that is a key detriment to his campaign so far?

It's not the lack of money that's hurting him in Iowa, though; people there expect to meet the candidates, sometimes multiple times, before making a final decision. But if he were doing better in the polls, money would follow, and then he could afford to buy ads in states where money does matter.

Unlike Glenn Beck, I absolutely do not think that Rick Santorum is the George Washington of today! But what if he were? What if George Washington had a child with a fatal genetic disease? Should he have stayed home instead of leading the troops in the revolution and being our first president? I don't think many people would say he should. Or what about our soldiers today? What about someone who is serving in our military today, and then has a child with a fatal genetic disease? Should they apply for a discharge? This is all very murky territory. People who don't like Santorum will find a reason to say he should quit.

It's true that I do not hear conservatives criticizing his decision to run. On the contrary, many conservatives see it as brave and as proof that he is "walking the walk" on the abortion issue and beyond. Whether that translates into support for his campaign a different matter, obviously.

Thanks, all, for the good questions, and sorry I wasn't able to get to all of them.

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Melinda Henneberger
Melinda Henneberger is a political writer for The Washington Post. She is the former editor-in-chief of Politics Daily and was also a reporter for The New York Times.
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