OpinionThu Aug 2, 2012 - 6:16 pm EST
Families of children with significant disabilities say their lives are enriched
A research study that was published in the current edition of the Journal Pediatrics found that parents of children with Trisomy 13/18, conditions whereby the child has an extra 13 or 18 chromosome, indicated that the parents considered the child to be happy and found that their lives were enriched by the child.
The findings are very different than that attitude of many pediatricians towards these conditions. The Canadian Press reported:
Medical textbooks are grim and bleak about babies born with genetic codes considered “incompatible with life.” But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it.
Recently I came across the story of Lilliana Dennis, a child who is living with Trisomy 18. After reading the heartfelt story about Lilliana and the Dennis family I responded by writing an article titled: Trisomy 18 is not a death sentence.
The research study was carried out by Dr. Annie Janvier - specialist in Pediatrics and Ethics at the University of Montreal and Sainte Justine Hospital in Montreal, Barbara Farlow B Eng MBA - patient safety Canada, and Dr. Benjamin Wilfond - Center for Pediatric Bioethics, Seattle Children’s Research Institute and Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.
The research team invited 503 parents of children who had a Trisomy 13/18 child to participate in the study. 87% of the parents responded and 332 parents (67%) of 272 children completed the questionnaire.
The parents indicated that their physicians stated to them that:
* 87% their child was incompatible with life,
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family
On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.
* 30% of the parents had requested a plan of treatment based on “full intervention.”
* 79% of the children who received “full intervention” were alive at the time the questionnaire was sent. Those children were a median age of four years old.
* The survival rates for children with “full Trisomy” 13/18 was 40% lived for at least 1 year while 21% lived to at least age 5.
Half of the parents reported that caring for a child with a disability was harder than they thought it would be and yet 97% of the parents described their child as a happy child and most of the parents indicated that caring for their child had enriched their lives.
The article in the Canadian Press interviewed Barbara Farlow, one of the authors of the study. Farlow, the mother of a child who had Trisomy 13 stated:
“We didn’t want our daughter to live on life support or to suffer. But if she had a chance to live comfortably and be happy . . . then we were willing and able to care for her, despite her limitations,”
Annie lived for 80 days. When an illness brought her back into hospital and she stopped breathing, the staff was slow to try to resuscitate her, despite her parents’ wishes. Later, Farlow and her husband discovered Annie’s medical file had a DNR — do not resuscitate — order on it, even though they hadn’t authorized it.
Dr Annie Janvier stated to the Canadian Press that:
“What we predicted as doctors happening to all these families didn’t happen,” says Janvier, who admits the findings are receiving a lukewarm response in some quarters.
“I just want to show that these kids mean something to their parents, ... And they seem like they have a quality of life that’s acceptable. Doctors are not torturing them. We’re not giving them undue pain. And they should be treated as unique children.”
Dr. Benjamin Wilfond, the lead research author in the study, told Reuters news that:
“There is a broader range of survival and experiences than providers know. The parents may be getting this information online and clinicians may need to rethink what they say to parents,”
“I think the point of our paper is to say these are quite serious conditions, but saying it’s hopeless is inconsistent with reality.”
I have known Barb Farlow and her family for several years. I have learned, through Barb, much about the lives of children with Trisomy conditions. It is my hope that society will break-through the negative bias towards children with profound disabilities, such as Trisomy 13/18. Everyone is a unique human being and people with disabilities offer other people the opportunity to accept and understand the true meaning of dignity. Hopefully this study will create new opportunities for families and the children with disabilities.
More information can be found at: http://www.trisomy.org/
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Pro-life group asks: Pray for abortionists who sell baby body parts
February 11, 2016 (LifeSiteNews) - This Lent, a pro-life group would like you to pray for an abortionist - specifically, an abortionist who facilitates the sale of unborn babies' body parts.
The Pro-Life Action League is asking for people to pray for three people in particular throughout the 40 days of Lent. All three were caught on video by the Center for Medical Progress.
Dr. Deborah Nucatola appeared in the first video released last July, sipping red wine and stabbing her salad as she discussed the dismemberment of aborted children, including where to “crush” their bodies for a "less crunchy" technique.
The second is Dr. Mary Gatter, who appeared in the second undercover video, haggling over the prices Planned Parenthood expected to receive for the aborted children's organs and tissue. At one point, she joked that she wants the revenue to pay for “a Lamborghini.”
And the third is Planned Parenthood CEO Cecile Richards, who was also caught in the first video praising Dr. Nucatola.
Despite the shocking evidence uncovered by CMP, Richards has insisted her organization did not receive any profit for what she dubs its "fetal tissue donation program." She apologized only for Dr. Nucatola's "tone." She has since said that Planned Parenthood will not receive any remuneration for babies' body parts.
"These three architects of Planned Parenthood’s baby parts scheme have devoted their lives to the destruction and exploitation of human life in the name of ‘choice,’" said Eric Scheidler, executive director of the Pro-Life Action League. "If we won’t pray for them, who will?”
He asked Christians to pray for these three abortion industry profiteers - and for Richards, who is a post-abortive woman - in order to fulfill Jesus Christ's commandment in the Bible, “Love your enemies, and pray for those who persecute you” (St. Matthew 5:44).
“In God’s eyes, what abortion has done to these three women may be worse than what they’ve done to unborn children, who now rest in our Lord’s loving arms," Scheidler said.
For most Catholics, Lent began yesterday on Ash Wednesday, and lasts 40 days.
Texas AG faces ethics probe for defending conscience rights of natural marriage supporters
AUSTIN, Texas, February 11, 2016 (LifeSiteNews) – The attorney general of the state of Texas is facing an ethics investigation for having affirmed the constitutional religious freedom of state workers to decline to issue marriage licenses to same-sex couples if it goes against their religious beliefs.
Attorney General Ken Paxton took steps to address the issue of conscience protection in his state before and after last June's Supreme Court's Obergefell decision imposing same-sex "marriage" on all 50 states, first issuing a statement the day prior clarifying that Texas law recognizes the definition of marriage as between one man and one woman and recommending that state officials wait for direction from his office should the High Court move to redefine marriage.
Paxton then issued a statement two days after the ruling, his office allowing county clerks and their employees to retain religious freedoms that may allow accommodation of their religious objections to issuing marriage licenses to same-sex couples, and said as well that justices of the peace and judges would similarly retain religious freedoms.
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A month later, a group of some 200 attorneys filed a complaint asserting that Paxton's position encouraged officials to violate the U.S. Constitution and break their oaths of office, according to ABC News.
The complaint was dismissed at first by the Office of Chief Disciplinary Counsel of the State Bar of Texas, but it was reinstated February 2 by a state Supreme Court-appointed appeals board, which contended that the complaint alleges a "possible violation" of professional conduct rules.
The appeals board decision to reinstate the case does not mean Paxton violated professional ethics, according to the ABC report, but does require him to respond to the complaint in conjunction with the investigation.
"The complaint has always lacked merit," said Paxton spokeswoman Cynthia Meyer, "and we are confident the legal process for resolving these complaints will bear that out."
Paxton was among several state officials across the U.S. who moved to ensure conscience protection in the immediate aftermath the Obergefell ruling, at times garnering the ire of homosexual activists.
Last July, South Dakota's attorney general granted permission to county clerks with conscientious objections to opt out of issuing marriage licenses to same-sex couples as long as another clerk in the office would issue the license.
In a highly contentious case, Davis had asked for a religious accommodation allowing her office to issue altered licenses to homosexuals without her name on them, which was eventually granted by Kentucky's Governor Matt Bevin. However, the ACLU sued, seeking to force Davis to issue the old forms with her full name on them. A federal judge rejected the suit earlier this week.
Last year, homosexual activists sent harassing messages, including threats of violence, to Oklahoma State Senator Joseph Silk and his family after the Republican legislator sponsored a bill that would have given the state's business owners the freedom to follow their religious convictions in regard to homosexual "marriage."
Paxton faces penalties varying between a reprimand and disbarment resulting from the ethics complaint. The Texas attorney general is also facing securities fraud charges.
This pro-abortion billionaire may run for president
NEW YORK, February 11, 2016 (LifeSiteNews) - He's an upwardly mobile, socially liberal billionaire whose political affiliation has changed numerous times over the years. He's teased numerous presidential campaigns in the past, but this time he's talking like he's serious. And no, he's not who you think he is.
Michael Bloomberg, who served three terms as mayor of New York City, has confirmed to media sources that he is considering running for president as an independent in 2016.
Bloomberg told told the Financial Times this week that he finds American political "discourse and discussion distressingly banal and an outrage and an insult to the voters," and that he's “looking at all the options."
The 73-year-old tycoon was a registered Democrat before switching parties to run in the less contested Republican primary in 2001. He became a registered independent in 2007.
As mayor, Bloomberg governed as a social liberal who strongly supported abortion and the LGBT political agenda.
In 2011, Bloomberg signed a controversial gag order directed at crisis pregnancy centers. A year later, he endorsed Barack Obama's re-election, saying that abortion-on-demand is part of "the world I want to leave my two daughters, and the values that are required to guide us there."
That's the same year Bloomberg Philanthropies announced a $50 million undertaking to expand "reproductive health," including a major partnership with Planned Parenthood-Global to overturn pro-life laws in four nations: Nicaragua, Sengal, Uganda, and Burkina Faso.
Mayor Bloomberg played a pivotal role redefining marriage in New York state, giving the four Republican state senators who voted for New York’s same-sex “marriage” bill the maximum campaign contribution allowed by law. One retired and a second lost his primary fight.
His strong emphasis on health regulations, such as attempting to ban soft drinks larger than 16 ounces, did little to enhance his popularity and were deftly parodied by Sarah Palin. (A state court struck down the proposed regulation.)
The financial heft he could bring into the race, as well as his quirky politics, has tempted Bloomberg to enter presidential politics in the past. He considered a presidential run in 2008 and thought more strongly about a third party bid in 2012, after hosting the inaugural convention of the “No Labels” movement in New York City in 2010, but he backed off each time after not seeing a viable path to victory.
With an estimated fortune of $39 billion, he has said he would be willing to spend more than $1 billion on his campaign in 2016 - but he would only enter the race if the Republican Party nominates Donald Trump or Ted Cruz, and the Democratic Party nominates Bernie Sanders.
He called Jeb and Hillary Clinton "two quality” candidates and "the only two who know how to make the trains run." Jeb reciprocated last month, telling CNN that Bloomberg is "a good person, and he’s a patriot and wants the best for the country.”
At least one of his competitors is eager to see Mike run. "I hope he gets into the race," Donald Trump told Greta Van Susteren on Fox News Wednesday night. "I'd love to compete against him...I would love to see Michael in the race."
That is likely because polling shows Bloomberg would draw most of his support from the Democratic candidate. "Although he is characterized as the New York counterpunch to Trump, Mayor Mike Bloomberg is more the nemesis of Bernie than he is of Donald," said Tim Malloy, assistant director of the Quinnipiac University Poll.
Bernie Sanders would defeat both Trump and Cruz in a head-to-head match, according to Quinnipiac. But if Bloomberg entered the race, he would win 15 percent of the vote largely from Sanders, giving Trump a one-point victory in the popular vote (and narrowing Cruz's loss to one point).
However, he could throw a major wrench in the Democrats' electoral college total, according to columnist Pat Buchanan.
"Not only would Bloomberg lose the Big Apple, his statewide vote would come mostly from the Democratic nominee, giving Republicans the best opportunity to carry the Empire State since Ronald Reagan coasted to re-election in 1984," wrote Buchanan, who served as White House communications director during Reagan's second term.
“It’s not beyond imagining that he could get in and have an effect on the race,” Sen. Sheldon Whitehouse, D-RI, told The Hill.
Perhaps sensing this, numerous Democrats - including Senators Claire McCaskill and Jeanne Shaheen - have thrown cold water on a Bloomberg presidential run.
Democratic National Committee chairwoman Debbie Wasserman Schultz, a Florida congresswoman, said this week that an independent Bloomberg candidacy "won't be necessary" - because the Democrats already represent social liberals.
"I really think when he takes a good hard look, he will conclude that the issues that are important to him...[have] a natural home among our Democratic candidates," she said. "And so, I think Michael Bloomberg's agenda is well cared-for and advanced among our Democratic candidates, and his candidacy, I think he will find, won't be necessary.""
His entrance into the race would be a true injection of "New York values" - making him the third or fourth New Yorker in the race - alongside fellow billionaire Trump from Queens, the Brooklyn-born Sanders, and onetime New York Senator Hillary Clinton.
Annie Linskey, a reporter for the Boston Globe who once worked for Bloomberg, told Fox News on Monday that there is "about a four" percent chance that Bloomberg will run.