Trisomy 18 and 13: More Children Like Bella Santorum Survive

Bella Santorum, the youngest daughter of Republican presidential hopeful Rick Santorum, was hospitalized on Friday, the second time this year she has needed such care.
Bella, age 3, suffers from Trisomy 18, a rare genetic disorder that is often considered fatal. Her survival has defied the odds. About 90 percent of children born with the disorder die in their first year of life. Santorum has discussed his daughter's condition many times on the campaign trail, describing her survival as "miraculous."
But according to a new study, a significant number of children with the condition are actually surviving to older ages, though it takes a lot of medical care to keep them going.
More than a third of hospitalizations for Trisomy 18 and the closely related Trisomy 13 over the past 15 years were for children more than a year old, the study said. In more than 10 percent of the cases, the child was beyond age 8.
Study author Dr. Chris Feudtner said the analysis, published today in the journal Pediatrics, shows that the conventional thinking that the disease is lethal is not totally accurate.

'Miraculous Turnaround' for Santorum Child Watch Video

Hospital Sued for Misdiagnosis Watch Video

Living With Down Syndrome Watch Video

"The norm is still great difficulty with survivorship for most of the children. But to say that is true for most does not mean that is true for all," he said.
Trisomy 18 and 13 occur in children who have three chromosomes for a particular gene when there should be only two. The conditions also are closely related to Trisomy 21, the scientific term for Down syndrome.
The conditions cause symptoms like clenched hands, low birth weight, mental deficiencies, small head and jaw and an unusually shaped chest, according to the National Institutes of Health. Diseases like pneumonia that are typically not life-threatening in other children can be for those with Trisomy 13 and 18.
In January, Bella Santorum was hospitalized with pneumonia, but recovered.
For the current study, Feudtner and his colleagues analyzed data on hospitalizations for children with Trisomy 18 and Trisomy 13. As many as 1,600 hospitalizations in the U.S. during the last 15 years were for patients with Trisomy 18 and up to 900 hospitalizations were for patients with Trisomy 13. Those patients underwent 2,765 major medical procedures, for everything from cleft palate surgery to heart surgery to repairs to the gastrointestinal tract.
Dr. Robert Marion, director of the Center for Congenital Disorders at The Children's Hospital at Montefiore Medical Center, said the study reflects a shift in philosophy on how to treat children who have such severe genetic disorders.
As recently as five to ten years ago, many doctors believed it would be wise to consider ending the extensive medical intervention those children received to prolong life. Maybe it would be better for nature to take its course.
"Thankfully, this has changed in recent years. Not only do some of these children survive, they survive with a pretty good quality of life," Marion said. "In children who are doing reasonably well, we will perform surgical procedures or provide more aggressive feeding therapy in order to give the kids a chance to make it."
Still, children who survive beyond age 1, like Bella Santorum, are the exception rather than the rule.

Santorum Wins Louisiana Primary

MANDEVILLE, La.—Rick Santorum won the Louisiana Republican presidential primary on Saturday, as voters in this conservative, Southern state decided they weren't ready to coalesce around front-runner Mitt Romney.
Exit polls showed Mr. Santorum winning with his most dominant performance yet this year among conservatives and blue-collar voters and getting robust support from nearly all types of people, according to the Associated Press.

Enlarge Image

Close

Reuters

Rick Santorum greeted supporter at a rally at in Sheboygan, Wis.

Mr. Santorum was grabbing the votes of nearly half of conservatives, and just more than half of those without college degrees—a measure of blue-collar voters.
With 100% of the precincts reporting, Mr. Santorum beat Mr. Romney, 49% to 27%.
But the former Pennsylvania senator's victory will give him only a modest boost to his efforts to blunt Mr. Romney's push toward the nomination. Only 20 delegates were at stake Saturday, and they may be divided among several candidates. Mr. Romney holds a lead of about 300 delegates over Mr. Santorum, according to the AP.
An ebullient Mr. Santorum, who had moved his campaign to Wisconsin on Saturday, told an enthusiastic election-night crowd in Green Bay, Wis., that he will continue pressing for the nomination.
"The people of Louisiana sent a loud and clear message: This race is long and far from over. And the people of Wisconsin, I just say to you: On Wisconsin, let's get it done."
Mr. Santorum, who had visited a bowling alley earlier in the day, was eager to share his success there, too.
"I don't want to brag, but I did bowl three strikes in a row. I just wanted to say that. This has been a pretty strong day on the campaign here in Wisconsin," he said. Wisconsin holds the next big nominating contest, on April 3, and recent polls have shown Mr. Romney in the lead.

Rick Santorum thanked Louisiana voters during a news conference in Green Bay, Wisconsin after he won the Republican primary in the Southern state, beating front-runner Mitt Romney. (Video: NewsCore/Photo: AP)

The Louisiana win comes as an increasing number of Republican leaders say it is time for the party to unify behind Mr. Romney and turn to the challenge of defeating President Barack Obama this fall.
Earlier this week, former Florida Gov. Jeb Bush, a leading conservative, endorsed Mr. Romney. Sen. Jim De Mint (R., S.C.), a leading figure among tea-party supporters, said he was "excited about the possibility" of the former Massachusetts governor "possibly" being the nominee. But Louisiana voters disagreed.

Washington Wire

• Santorum: 'We're Still Fighting'

"I definitely voted for Rick Santorum," said Dennis Calkins, a 62-year-old retiree who cast his ballot at Mandeville High School. "I am pretty conservative, and he just seemed down-to-earth and no-nonsense."
Mr. Calkins said he liked how Mr. Santorum responded to informal questions on a television show months ago.
"I liked every answer that he gave," Mr. Calkins said. He said Mr. Santorum's Christianity also influenced his vote. "It's not so much that he's holy moly and religious, but it gives him a basis for morality and his sense of right and wrong."
Loretta Owens, 62, who attended a Santorum rally Friday in West Monroe, in the northern part of the state, said she had reservations about Mr. Romney. "There's something about Romney that I just can't grasp," she said.
Mr. Santorum had aggressively courted conservative voters in the northern part of Louisiana, the same area that helped Mike Huckabee claim victory in the 2008 GOP primary. In his pitch to Republican voters there, Mr. Santorum said he would stand up to big government in Washington, stand firm against abortion rights, and would live up to his campaign promises.
Mr. Santorum began labeling Mr. Romney the "Etch A Sketch candidate," whose positions would change like the draw-and-erase toy. The line came after a Romney aide said that the former governor would make a pivot at the time of the general election, "almost like an Etch A Sketch."
But it was during this leg of the campaign that Mr. Santorum made what rival Newt Gingrich described as his "biggest single mistake." Mr. Santorum said that if a candidate is "going to be a little different than the person in there," then "we ought to stick with what we have." His opponents said it was outrageous that Mr. Santorum would consider backing Mr. Obama over a GOP nominee.
Mr. Santorum later said he had been inarticulate, and that it was "preposterous" to suggest that he would pick Mr. Obama over a Republican. He said he would support the eventual Republican nominee, a reminder that Mr. Romney has been racking up more delegates than Mr. Santorum and taken a hard-to-overcome lead.
Along with Wisconsin on April 3, Maryland and the District of Columbia hold primaries. After that, the race heads to the Northeast, including the delegate-rich states of Pennsylvania and New York.

Ryan Madson’s injury could serve as warning for Phillies’ Cole Hamels

FORT MYERS, Fla. — Cole Hamels’ eyes widened and his forehead crinkled when he heard the news.
“No,” he said, drawing out the syllable in disbelief.
Yes, he was told. Ryan Madson, a teammate of his for the previous six seasons, was scheduled to undergo season-ending Tommy John surgery after tearing a ligament less than two months into his tenure with the Reds
The news is relevant to Hamels, not just because of the personal relationship and professional kinship that he and Madson share, but also because both pitchers are less than eight months away from the potential riches of free agency. Madson signed a one-year, $8.5 million deal with the Reds after a multiyear extension with the Phillies failed to materialize. Now, he is a vivid reminder of the risks a player takes when he sacrifices security in favor of a bigger payday down the road.
Hamels could very well find himself in a similar position this year. While both he and the Phillies profess optimism about the prospects of reaching an agreement on a long-term contract extension, the 28-year-old lefty is now just 11 days away from entering the season without any guaranteed money beyond the $15 million he is due to earn in 2012.
Hamels’ agent, San Diego-based John Boggs, visited Clearwater earlier this month to talk business with Phillies general manager Ruben Amaro Jr. But if the two sides have made any progress, they have done an admirable job of keeping it under wraps.
You might expect that the prospect of seeing a payday evaporate would intimidate a player, particularly one who could easily command a deal in excess of $100 million on the open market. But if there is one thing that we have learned about Hamels, who has already won a World Series MVP and is coming off a season in which he went 14-9 with a 2.79 ERA and 194 strikeouts in 216 innings, it is that he does not scare easily.
“I’ve had some serious injuries with broken arms and herniated discs,” he said Saturday after throwing four innings against the Red Sox [team stats] in a 10-5 win at JetBlue [JBLU] Park. “So what? You lose a year, but you kind of gain a year because you are not putting the wear-and-tear. Hopefully Madson can look at it like that. If you’ve ever overcome an injury, then you can overcome anything.”
As he heads into his seventh season in the majors, an injury is probably the only thing that can prevent Hamels from becoming one of the highest-paid pitchers in the sport. Since breaking into the majors in 2006, he ranks eighth among major-league starters in strikeouts (1,091), 16th in innings (1,1611/3), and 15th in ERA (3.39, minimum of 700 innings). Over the last two years, he has propelled himself into the realm of the elite, posting a 2.92 ERA and averaging 212 innings, 202 strikeouts, and just 52 walks while starting a total of 64 games.
This year, Hamels will start the Phillies’ home opener for the first time in his career. Pitching coach Rich Dubee made the decision Friday after opting to pitch second-year righthander Vance Worley in the team’s season-opening series in Pittsburgh.
“It’s a great honor. Just to be able to be out there in front of your home fans,” he said. “It’s the start of their season, because it’s at home. I’ve been able to be here for quite a few years and be able to see the sort of excitement that everybody has having that first game in Philadelphia, and now to be able to pitch it, it’s kind of like leading off a postseason series.”
In a perfect world, Hamels will have a healthy new contract by the time October rolls around. Then again, Madson’s injury is another reminder that an athlete’s earning potential can change in an instant.
“I feel sorry for him,” manager Charlie Manuel said. “I never want to see anybody get Tommy John. Especially Madson

Romney faces another 'must-win' state in Illinois primary

Wheaton, Illinois (CNN) -- Here we go again -- another Tuesday, another "must-win" primary state for Mitt Romney.

Fifty-four delegates are up for grabs Tuesday when Illinois votes for the Republican presidential nominee. But for the former Massachusetts governor, capturing the popular vote might be just as important as increasing his lead in the battle for delegates.

"Romney could really use a romp in Illinois. It wouldn't put him over the top, but it would put him back on track with a head of steam," said CNN Chief Political Correspondent Candy Crowley.

After finishing third last Tuesday in Alabama and Mississippi to his main rival for the nomination, former Sen. Rick Santorum of Pennsylvania, and to former House Speaker Newt Gingrich, Romney regained a bit of momentum on Sunday when he trounced Santorum in Puerto Rico's primary, getting 83% of the vote and picking up all 20 delegates up for grabs.

Brown: Romney will get nomination

Santorum: Romney can't be the nominee

Santorum: Unemployment 'doesn't matter'

Rick Santorum's fight for delegates

Now comes Illinois, with a large, somewhat moderate GOP electorate, thanks to the large number of voters in metropolitan Chicago. Call Illinois the new Michigan, or the new Ohio -- the last two "must-win" states.

Back on February 28, pundits said Romney had to win Michigan, the state where he grew up and where his father was governor. He did.

A week later, on Super Tuesday, political analysts and strategists said Romney had to win the crucial battleground state of Ohio. Again, he did, narrowly edging out Santorum.

"If he and Santorum stay true to the template that fits most of the past contests, Santorum will pull strongly in rural and more conservative downstate Illinois and Romey will do better up north, in the more populous areas, particularly around Chicago and its suburbs," said Crowley, anchor of CNN's "State of the Union."

Republican consultant Matt Mackowiak agrees.

"Illinois presents a must-win for Romney as the state's more moderate makeup and urban population set up better for Romney than Santorum," Mackowiak said.

Romney added events in Illinois on Friday morning and Saturday evening and all day Sunday, cutting back on time in Puerto Rico to Friday evening and Saturday morning.

He also dropped his emphasis on the math that he argued made it clear that he alone has the only shot during the primary and caucus season to reach the 1,144 delegates needed to clinch the nomination.

Over the past few days, he appears to be increasing his attention to female voters and to gas prices.

"People across this country are wondering what they are going to do with these gasoline prices," Romney said Monday morning at an event in Springfield. "A lot of moms are wondering if they can take their kids from event to event, from school to soccer practice. People are hurting in this country with gasoline prices the way they are. And the prices are, to a degree, a result of failed economic policies by this president."

And he continued to tout his economic credentials and attack Santorum over the economy.

"I am someone experienced in the economy. I am not an economic lightweight. President Obama is. We are not going to be successful replacing an economic lightweight with another economic lightweight. We are going to have replace him with someone who knows how to run this economy."

In response, Santorum asked if Americans wanted a president with ties to big banks.

"I heard Gov. Romney here called me an 'economic lightweight' because I wasn't a Wall Street financier like he was. Do you really believe this country wants to elect a Wall Street financier as the president of the United States?" Santorum asked at a campaign rally in Rockford.

A new poll out Monday by American Research Group indicated Romney with a 14-point lead over Santorum. According to the survey, which was conducted over the weekend, 44% of likely GOP primary voters in Illinois said they were backing Romney, with 30% supporting Santorum, 13% backing Gingrich and 8% supporting Rep. Ron Paul of Texas.

Regardless of the polling, Santorum remains confident.

"If we're able to get out of Illinois with a huge or surprise win, I guarantee you, I guarantee you, that we will win this nomination. We will nominate a conservative, we will beat Barack Obama in the fall election," he told voters Saturday night in Effingham, Illinois.

And his criticism of Romney appears to be getting more personal.

"It really has to do with what your principles and your core is," Santorum said Monday in an interview on CBS. "I have a core. I'm someone who has really strong convictions about the limited role of government, about the importance of having a strong defense, you know, lowering taxes and getting regulation down. That's a sharp contrast with Mitt Romney."

GOP strategist and CNN contributor Alex Castellanos says to win, Romney needs to think big.

"Romney can put this campaign away only if he elevates his campaign into a cause. Romney's campaign now is only about why he's a better businessman than Barack Obama. He is offering a very small campaign to a country craving a big change in direction. And Americans want to be part of something large, not something small," said Castellanos, who was a media adviser for Romney's 2008 White House bid but who's not taking sides this cycle.

"This campaign is his for the taking but Romney won't put this race away until he offers voters a purpose larger than his campaign provides them today."

Gingrich made a quick swing through Illinois last week, but those were his last stops in the state. He is concentrating his efforts on Louisiana, which holds its primary on Saturday. Paul made one stop in the state last week as well. But neither campaign is putting any ad money into the state.

Romney is once again pouring big bucks into a crucial state. His campaign and the pro-Romney super PAC "Restore Our Future" have spent more than $4 million on broadcast and cable ads.

At the same time, Santorum's campaign "Red, White and Blue Fund" super PAC that supports him has spent about $530,000 in television time in the state -- that equates to about a 7-1 spending advantage for Romney

So what if Santorum pulls the upset in Illinois? It will be costly to Romney, Mackowiak said.

"While Romney does appear the likely nominee, losing Illinois will intensify concerns about Romney, potentially drive Gingrich from the race (forcing a Romney-Santorum head-to-head matchup) and drag out the already costly primary," said Mackowiak, a former press secretary to Sen. Kay Bailey Hutchison of Texas and former Sen. Conrad Burns of Montana.

"While Santorum has repeatedly over-performed polling, Romney should win Illinois Tuesday giving him a significant momentum boost and slowing down Santorum's progress."

Crowley had a similar take, saying a loss for Romney "would be close to catastrophic for him."

And a Romney victory?

"A nice win would at least let Romney dust himself off after losses in Alabama and Mississippi," she said.

Stay tuned. There are many more Tuesdays to come.