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La vita è Bella

By on 4.13.12 @ 6:09AM

A Penny for our thoughts.

It didn’t help that we had responded to Penny’s diagnosis so differently. Two days after our return from the hospital, Peter finished grieving and he walked outside and never looked back. Penny was his beautiful daughter, and that was that. I trusted him — he had immersed himself in grief and had emerged ready to receive our daughter. He didn’t worry about her future. He didn’t wrestle with the theological questions surrounding Down syndrome. He just loved her.

I wasn’t there yet. I felt too fragile….
 — From A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny, by Amy Julia Becker

It was in a forum on Nov. 19 of last year. For seven minutes and 38 seconds, Rick Santorum spoke about the health struggles of his daughter Bella, and his response thereto. The most stunning line was this, after saying that for the first five months of her life he had tried to be “the rock” for his family, the one who didn’t break down and show too much sorrow or grief. But he wasn’t really a rock, he said:

“It was a lie. I decided to not love her like I did because it wouldn’t hurt as much if I lost her…. I had seen her as less of a person because of her disability.” But then, he realized as he held her little finger after she had been resuscitated from a situation where she had completely stopped breathing, he realized his pose was a façade: He loved her fiercely, desperately.

One cannot watch that video and not like Rick Santorum. Similarly, the 3:38 video on Bella on his campaign website is too raw, too honest, to have been scripted, and it is quite moving and inspirational.

“Bella makes us better,” he said. “Some people describe people like Bella as ‘disabled children,’ and I look at her and I look at the joy and the simplicity and the love that she emits, and it’s clear to me that we’re the disabled ones, not her; she’s got it right. She’s got a great and beautiful spirit — one that emits unconditional love, and we can learn a lot from that.”

While Santorum was still campaigning for president, it didn’t seem appropriate to write much about his special-needs daughter, for fear it would look like making her a campaign issue. But as he spoke at appropriate times and places about her, it was striking to see how often he said things very similar to what Amy Julia Becker wrote in A Good and Perfect Gift, quoted above. Becker’s daughter Penny has Down syndrome, or Trisomy 21, which involves an extra 21st chromosome; Bella Santorum has Trisomy 18, also known as Edwards Syndrome, which involves extra material on the 18th chromosome. The two ailments are similar, except that Trisomy 18 is associated with more severe, indeed more life-threatening, medical complications.

Becker’s book is a remarkably candid, wonderfully moving memoir of events during the first two years of Penny’s life. It carries no political agenda, so it merits a light touch when its material is used in the context of a political candidate such as Santorum — but the points to be made here are not political at all, but rather cultural and humane.

Pre-echoing Santorum’s comment about Bella making us better and offering a gift rather than being a burden, Becker wrote (in a letter to her daughter): “When you were first born, I was worried, I didn’t know much about Down syndrome, and I was afraid. I’m not worried anymore. I am proud of you — our smart, funny, beautiful, delightful daughter. Thank you for being in our lives.”

What is striking is how often even the most well-meaning of Becker’s acquaintances say things about Penny that made Penny sound like a terrible burden rather than a joy. Especially frustrating were the times medical professionals seemed to assume that a baby with Down would be a baby not worth having. They also, rather insistently, pressured Becker to have various forms of pre-natal testing when she again became pregnant. Becker’s observations tracked closely with what Santorum said in a famously contentious interview with the clueless Bob Schieffer on Face the Nation.

Here’s what Santorum said: “We’re talking about specifically prenatal testing and specifically amniocentesis, which is a… procedure that creates a risk of miscarriage when you have it and is done for the purpose of identifying maladies of a child in the womb, which in many cases, in fact, most cases, physicians recommend, particularly if there’s a problem, recommend abortion.”

Here are extended passages from Becker’s lovely book:

I turned on NPR as I drove home, and the story was about a new ethics recommendation from the American College of Obstetricians and Gynecologists (“ACOG”). It stated that doctors unwilling to provide abortions had an obligation to refer their patients to another physician who would provide the procedure. In the words of the spokesperson on NPR, “If a physician has a personal belief that deviates from evidence-based standards of care… they have a duty to refer patients in a timely fashion if they do not feel comfortable providing a given service.” I thought about all the women who were offered prenatal tests to screen for Down syndrome. And I had to wonder how much those tests were really offered care for those women, for those babies. I knew that new medical guidelines — evidence-based standards of care — suggested that all pregnant women, regardless of age, be screened for Trisomy 21. And I knew that studies showed that women who received a prenatal diagnosis of Trisomy 21 terminated their pregnancies the vast majority of the time. Evidence-based standards of care resulted, more often than not, in the elimination of people like Penny from our society. I felt the anger surge. The report came across as so factual, so neutral. But I knew from talking to friends who had children with Down syndrome that the information about that extra chromosome was rarely delivered in a neutral manner….

ACOG had pitted “personal beliefs” against evidence, as if a physician who was unwilling to perform an abortion had defied the evidence about how to care for this woman, this child…. “Evidence-based standards of care” included all the physical problems Penny could face, but not the joy she could bring or the abilities she might have…. “Evidence-based standards of care” didn’t include the reality that all of life is fragile and uncertain, with potential for heartbreak and potential for great delight.

Before the actual text of the book, the publisher printed a series of questions and answers with Becker. One was about pre-natal testing. Here’s what Becker answered:

Page: 1 2  

About the Author

Quin Hillyer is a senior editor of The American Spectator and a senior fellow at the Center for Individual Freedom. Follow him on Twitter @QuinHillyer.

Letter to the Editor View all comments (44) |

spike59| 4.13.12 @ 7:19AM

regardless of my opinion of Santorum as a presidential candidate, i've gotta say that he's one helluva dad...and the world is a little sweeter with Bella in it

Brian Mc| 4.13.12 @ 7:38AM

Brilliant, Quinn!

You made me forget the coffee was ready. I will have to post this and encourage others beating the "Beat up Santorum" drum to first consider your offering this morning.

One thing for certain: I found thanksgiving quite prevelent in the forefront of my thought which does not happen enough for me...so, I thank you for that.

Appleby| 4.13.12 @ 7:55AM

One cannot imagine Rick Santorum opining that he would not want his daughters "punished with a baby", the most callous and heartless remark Obama has probably ever made in his life. One hopes that now Mr. Santorum has abandoned the race for the Presidency, there will not be any Saturdeay Night Live cruelties about his daughter, or the kind of evil attacks on his family that Sarah Palin suffered regarding her own beautiful child. But knowing the "progressives" as I unfortunately do, I expect to hear the Flakes of the world using her little life as yet another ignorant bludgeon against the Catholic church.

Maxwell| 4.13.12 @ 8:49AM

I would not be to surprised if David Letterman has more than a few jokes. When I read the Jokes Section on Newsmax he is STILL on Sarah Palin.

W| 4.13.12 @ 8:51AM

So why are you helping Obama win by not voting for Romney?

Appleby| 4.13.12 @ 7:38PM

You are asking me "Would you rather be stabbed to death or shot?"

And the answer to that question is, "I'd rather play futbol."

Kitty | 4.13.12 @ 7:59AM

Let's not forget Trig Palin. I cringe when I think of the excessive reaction Baby Trig generated from the Left and the elites. What a cold, disgusting display from people who try to tell the rest of us how to live. Maybe Trig helped paved the way.

Teaghan| 4.13.12 @ 8:32AM

Or how to die~

Alice Moore| 4.13.12 @ 8:51AM

I think it's hypocrisy of the Left. Many Libs I know accuse me of wanting to throw Tiny Tim out in the snow and breaking his crutch over my knee. This was when I said that contraceptives, like botox, should be personally borne. Many of whom I thought were endowed with critical faculties said that my own special needs son would be "on his own" if any of the GOP nominees won the White House.

They show their true natures when they mock Trig Palin and Bela Santorum.

albert constantine jr.| 4.13.12 @ 11:39AM

Once the government is running healthcare, the “choice” argument will go away. As others are paying the tab, others will make the decision on which children can be carried to term. Then it is not difficult to imagine that the same people who are claiming that Republicans want to leave families with autistic or otherwise afflicted children on their own, will be clamoring to eliminate the potentially disabled in utero as a cost saving measure.

Teflon93| 4.13.12 @ 9:26AM

Rick Santorum is a much finer man than some of his opponents.

Mike Hawk| 4.13.12 @ 12:23PM

Rick Santorum is a decent, good , genuinely moral man and a man of faith. All the trashing by political opponents is for naught and only reflects back on their lack of those same qualities. You who have disparaged him should be humble in his presence.

Sad| 4.13.12 @ 3:58PM

I am.

Christopher C| 4.13.12 @ 6:56PM

Well, of all the candidates for the R nomination this time, he was easily the pick of them all. Yes, he felt like the most morally-anchored. But then there were some of the policy specifics - the idea to simply strike down all federal regulations that carried a price tag of more than $100 million (that figure from memory). And what does the now-presumptive nominee offer instead? A "review". God, there's a recipe for maintaining the status quo. It explains, though, why the GOP establishment so readily lined up behind Mr Romney.

So, the final outcome. The Presidential race comes down to a head-to-head contest between a talented huckster, who has the enormous advantage of being able to say agreeable things with total apparent sincerity and then strive effectively to accomplish the opposite, and someone who's so wooden that he chooses to call himself a "severe" conservative, so demonstrating that he can't even get the rhetoric right, let alone offer philosophically-coherent economic plans.
More than anything else, I put the current sorry state of this year's Presidential race to Ohio primary voters. Did they not see that they could have voted for someone real, and so provide everyone else with a chance to vote for a real Obama alternative?

Mike Hawk| 4.14.12 @ 4:27PM

You also have a very important Senate contest in Ohio as do we in PA. Brown, the uber Liberal/Socialist has to go. In PA we need to throw out Bob (with one 'o') Casey. I am supporting Sam Rohrer the Conservative in the primary on the 24th. He is running against two genuine RINOs. You have a good Conservative running in Ohio too. We need to elect them both. (That stupid protest vote in '06 gave us Brown and Casey.)

Todd M | 4.16.12 @ 2:24AM

I am still sick that he had to drop out. He said the money dried up. Rick, his wife and children are a real inspiration. Sadly - the RINO GOP/RNC Rove/Romney gang does not want honorable people anymore.

cali| 4.13.12 @ 9:41AM

Little Bella looks like her Papa!
What an angel; the Santorum Family has so much grace, substance, love and, compassion, that one can not stop thinking about the trying times this family goes thru with this God Given Little Angel!

What a touching and, sad situation it is.

Dick Nome| 4.13.12 @ 9:42AM

Obamacare would condemn these children to crematories. Don't doubt it. The death panels would not tolerate the expense which is all it comes down to for Liberals.

The Bishop| 4.13.12 @ 10:38AM

A very touching commentary, Mr. Hillyer. I had to dab the tears while reading it at Panera Bread this morning with my coffee. God continue to bless the Santorums.

serendip| 4.13.12 @ 10:47AM

Having listened to the 3:38 video from Rick Santorum's website about Bella, I have saved it to my "favorites," to listen to when I need courage. What an inspiration it is!

MRD| 4.13.12 @ 11:23AM

Mr. Hillyer:
Thank you for writing this. the world needs to see more of this. As a physician I believe the central issue facing our society is whether we as a society do or do not believe in the truth of your closing statement , whether we believe that "We have individual worth as human beings. We have individual worth as children of other men and women who themselves are individuals. We have individual worth, mostly, as children of God." Indeed in some sense as Sen. Santorum pointed out we still believe in the Declaration of Independence. As important as economic issues such as the deficit, and unemployment are, in reality we will not ultimately solve them if we are not the kind of people who believe in the central founding idea of America and more. The United States will ultimately not survive in recognizable form as a country with a left wing secular humanist philosophy, nor with a right wing Ayn Rand kind of libertarianism. All of the founders knew this. At the end of the day whatever Senator Santorums imperfections as a candidate, they were dwarfed by the fact that he lent something unique and invaluable to the presidential field. This is why I was a supporter. I suspect most of his supporters felt this way. I hope he remains in public life.

I hope Governor Romney defeats Obama, and I think if he does he will hopefully implement policies that help the economy recover, but on some level this will only be a temporary victory if we do not address the underlying cultural issues that lead to the moral and social decay that underlies our problems

Occam's Tool| 4.13.12 @ 12:13PM

It was late March of 2004. My wife was down in Guatemala to adopt my daughter, Rebekah, who was 10 months old at the time. While she was there, she went to church with the lawyer who was helping us adopt Rebekah ( a simply fantastic woman, as I will relate later on). There, my wife met the baby who would become my son---a little boy who had been given up for adoption, a boy with microtia of the right ear and middle ear damage that would result in deafness in that ear. His left ear, and hearing, was perfect. Isaac, however, was going to be very difficult to find adoptive parents for, as he was a "special needs" child due to the ear, and potential language problems.

I asked my genius wife if the other neurological development signs seemed intact, as we had reviewed these things (for me, again---but developmental issues are part and parcel of psychiatry) before adopting Rebekah, and she said that Isaac was a happy baby with good eye contact, muscle tone, and normal development so far. There would, of course, be the costs of having his ear taken care of (Bone Anchored Hearing Aid was put in at Mayo, as well as the fitting of his facial prosthetic for the ear).

To help with defraying the medical costs, our attorney, Cynthia, deferred her $15,000 in legal costs to help us adopt Ike. So that's how I have my little buddy who regularly puts a scare into me when playing chess and checkers at age 8, and whose love and hugs and kindnesses towards his dad are among the two best things in my life (the other is my daughter's love and hugs---but Ike is more emotive than Rebekah, and also, since he looks like a Hispanic god (despite the ear), Ike has left trails of heartbroken young lasses from near pole to near pole (Rotorua, New Zealand, where the pre-school girls greeted their "Isaac" to Northern Minnesota, where my daughter's friends also love Isaac).

Bella is precious to the Santorums, and I think the experience has made Rick a much better man. I know that Ikelberry Hound has made my life infinitely better.

Occam's Tool| 4.13.12 @ 12:16PM

Prenatal screening can help with determining if a fetus will need in utero surgery, as well.

Maria| 4.13.12 @ 12:43PM

Mr. Hillyer,
Another eye opening book about Down Syndrome is "Expecting Adam" by Martha Beck. Do yourself a favor this is a great read. Ms. Beck was a graduate student at Harvard at the time of her pregnancy. The lack of tolerance for pregnancy at the university is astonishing. It exemplifies Obama's comment, "I don't want my daughters punished for a mistake". Martha Beck and her husband John against all odds bring dignity and triumph to the birth of their son Adam.
God Bless Rick Santorum and his beautiful family.

RCV| 4.13.12 @ 1:01PM

Thanks you Quin for this moving piece, and thank you Mr. and Mrs. Santorum for being there for little Bella. Her sweet little face warms me each time I see it.

Paul| 4.13.12 @ 1:28PM

Thank you Mr. Hillyer,
God allowed my wife and me to have for 13 months, a daughter with VATER Syndrome. It was a difficult time - many hours at the hospital, many hours traveling to and from - while caring for three older children. She died at home where we and the nurses were doing our best to care for her on a ventilator and feeding through a g-tube. It was 30 years ago and it was a special time. I sincerely pity the young couples of today and the spectre of the all powerful Obama Progressive Communist Pervert Socialist Satanic world government. God is for life - He created it. Satan is for death. I thank God for the life he gave to us and for her eternal life in heaven without any more pain.

1ConservativeUSA| 4.13.12 @ 1:29PM

Well done, Mr. Hillyer. As I type, tears are in my eyes.

S.F.P.| 4.13.12 @ 1:48PM

Thank you Mr.Hillyer for this uplifting story...

Joe D.| 4.13.12 @ 4:46PM

Quinn, excellent article. It's speaks volumes for what our society has become for the worst. But in Santorums case and Mrs. Becker we can see all is not lost with people who still respect and appreciate everyones life from God.

Occam's Tool| 4.13.12 @ 6:10PM

The other thing that really irritates me, and made me cancel my subscription to NEJM, is the pro-abortion, medical rationing, euthanasia of today's medical opinion leaders. It is, quite frankly, nauseating. (I still get the NEJM table of contents for each month sent to me, and can order anything I want from their scientific articles that looks good or useful from my state's medical research library. But the idiot Liberal spin on the opinions is ridiculous---I've seen articles from their MD/JDs on forcing docs to provide euthanasia, for example, just like the ridiculous ACOG guidelines above.

You put a sign up in your office---"will not discuss or do abortions in this office. The number for planned parenthood is this: 555-scumofearth." Make up 100 copies of that sheet, and hand it out.

Christopher C| 4.13.12 @ 7:01PM

Um, OT - should not the phone number for Planned Parenthood be 666-scumofearth?

Occam's Tool| 4.13.12 @ 6:11PM

Guess I should have closed the parenthesis above after "above."

Simon Templar| 4.13.12 @ 6:53PM

Quin, superb article....

Quin| 4.13.12 @ 7:10PM

Thanks, Simon.

4sailing| 4.14.12 @ 3:47AM

Nicely done. Thanks for the smile to start my weekend.

Marie commenting| 4.13.12 @ 8:26PM

Quin, I've got to add my thank you for this wonderful heart warming piece this baby is an angel. It hurts my heart to think of all the children not given the chance for life. BELA is a beautiful child and she has a beautiful Dad and Mom. Thank you again!

Nite| 4.13.12 @ 9:55PM

I worked in a Neonatal ICU for several years and saw numerous babies with birth defects, some of which were severe. Not on parent ranted about not wanting that child. Their questions centered on what was needed to provide care. Now, people get abortions at the drop of a hat. Jesus said suffer the little children to come unto me. He meant that. When it time for them to go to him, he makes that decision, not an abortionist.

Colleen| 4.14.12 @ 1:28AM

Beautiful, just beautiful. Frame it and hang it on the wall of your office, you done good with this one.

RJ| 4.14.12 @ 3:58AM

Good article, Quin and may God bless the Santorums. I have been increasingly concerned about the decline of American society over the last several years. Rick and Karen Santorum show that there are parts of our society which is as strong and good as ever. I wish Bella and her family the best. I am inspired by their character and virtue.

Orygun| 4.14.12 @ 3:46PM

Rick and his family have been a constant source of inspiration for me during what has become a nasty GOP primary. It pains me to see the people of this country turn their back on a good and decent man to lead this country and instead return to the business as usual. I am so thankful that the Santorum's have the faith and strength to put themselves in the sights of the some of lowest forms of humanity in order to save us all from our own apathy. He has my eternal gratitude.

Oregon| 4.14.12 @ 8:42PM

Excellent! Just make sure you still give him your vote on May 15!

Kingofthenet| 4.15.12 @ 8:05AM

I am sure that $1,000 NRA lifetime membership is exactly what this poor unfortunate child needs, she can keep the glock by her teddy bear.

Bob in Maine| 4.15.12 @ 9:46AM

A FIVE STAR recommendation for this article! Profound and probing. Convicting, too. Read at your own risk.

Caroline| 4.15.12 @ 10:34PM

What a beautiful article. Thank you.

More Articles by Quin Hillyer

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March 19, 2013 | Quin Hillyer

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The Coming Obama Crack-Up

March 6, 2013 | Quin Hillyer

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