Alex Schadenberg

Families of children with significant disabilities say their lives are enriched

Alex Schadenberg
Alex Schadenberg
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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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'Don’t ever say ‘yes’ to that. It’s terrible,' said Robertson.
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Phil Robertson: Never vote for politicians who support ‘ripping human fetuses’ from mom’s womb

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By John Jalsevac

Phil Robertson is known for not pulling any punches when it comes to expressing his opinions on controversial issues, and he certainly didn’t disappoint at the Outdoor Extravaganza in Louisiana earlier this month.

Speaking to a massive crowd of some 8,000 outdoors enthusiasts at the CenturyLink Center, Robertson blasted Christians for not getting active in the political sphere.

“There are about 90 to 100 million of us who claim Jesus. The problem is only half of you register to vote and out of the half of you that registers to vote, only half of that group actually goes and votes,” Robertson said, according to the ShrevePort Times.

“Therefore, when you’re looking up there and griping and complaining about what you see in Washington D.C., you might as well shut up,” he added. “The reason they’re there is we’re putting them there. If you don’t get anything else out of this, remember this — register to vote for crying out loud.”

But Robertson reserved his strongest remarks for politicians who support abortion.

“If the dude or woman is for ripping human fetuses out of their mother’s womb, don’t ever vote for that,” Robertson said bluntly. “Don’t ever say ‘yes’ to that. It’s terrible.”

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Robertson also lamented the increasing secularization of the United States.  

“We’ve lost it folks,” he told the crowd. “We ran God out of our schools. We ran him out of the entertainment business. We ran him out of the news media. We’ve run him out of the judiciary, and we’ve run him out of Washington D.C.

“Well, what you get is what is left up there. They’re ungodly. You agree?”

Ever since A&E’s Duck Dynasty became the most popular reality show in TV history, members of the Robertson family have earned a name as unapologetic defenders of traditional Christian values.

At the Outdoor Extravaganza, Phil was accompanied by his wife, Miss Kay, and eldest son Alan, who also addressed the crowds. 

Phil’s blunt deliveries have occasionally landed him in hot water – most memorably when he addressed the topic of homosexuality in an interview with GQ magazine, earning him a short-lived suspension from his TV show by A&E.

But Robertson refused to apologize for the remarks despite intense pressure from homosexual activists and leftist groups.

“They railed against me for giving them the truth about their sins,” Robertson later said about the response to his GQ interview, pointing out that in the interview he had simply quoted Scriptural prohibitions against homosexuality and a variety of other sins.

"The news media didn't even know it was a verse," Robertson said. "They thought I was just mouthing off."

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Four Indiana abortionists could lose their licenses over reporting violations

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By Ben Johnson

The attorney general of Indiana, Greg Zoeller, has asked a state board to review the medical licenses of four abortionists, including an out-of-state abortionist who failed to report two cases of statutory rape.

The Indiana Medical Licensing Board will review the cases of Dr. Ulrich “George” Klopfer, Dr. Resad Pasic, Dr. Kathleen Glover, and Dr. Raymond Robinson.

A press release from the attorney general's office called Klopfer's “the most egregious complaint.” Klopfer, who lives in Crete, Illinois, failed to report abortions of two 13-year-olds – one at his Women’s Pavilion abortion facility in South Bend and another in his office in Gary.

All abortions must be reported to the Indiana State Department of Health, and abortions performed on minors younger than 14 must also be reported to the Indiana Department of Child Services within three days. Under state law, children under the age of 14 are incapable of consenting to sex, so any sexual relationship with them is considered likely statutory rape.

Klopfer reported the two abortions 116 days and 206 days afterwards, something he described as “an honest mistake.” Klopfer faces a misdemeanor criminal charge in both Lake and St. Joseph county in connection with those allegations.

Every single one of the 1,818 abortion reports Klopfer turned in to state authorities between July 2012 and November 2013 was false or incomplete, Zoeller says. The doctor often omitted the father's name and had a habit of listing the date of every abortion at 88 weeks gestation.

The abortionist is also charged with 13 violations of the state's informed consent law.

“The pending criminal charges brought by county prosecutors along with the sheer volume of unexplained violations...merits review by the Medical Licensing Board to determine whether disciplinary action is warranted,” Zoeller said.

The other three abortionists work at the Clinic for Women in the Indianapolis area. According to a press release from the state attorney general's office, they “are in alleged violation of similar record-keeping and advice and consent laws regarding abortion procedures,” but they face no criminal charges.

The allegations were collected and submitted by Indiana Right to Life, which combed through Klopfer's records. “Our legislators passed laws regarding consent and record keeping to ensure high standards of quality and care for Hoosier women,” Indiana Right to Life President and CEO, Mike Fichter, said. “We're disappointed that these abortion doctors apparently did not willingly comply with Indiana law. We hope the Medical Licensing Board immediately schedules hearings.”

“If found guilty, we believe the abortion doctors should be fined and their licenses to practice in Indiana should be revoked," he added.

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His views were shared by national pro-life leaders. “We are encouraged by the filing of these Administrative Complaints today and urge the Board to revoke Ulrich Klopfer’s medical license due to the fact that he placed young girls in serious risk of continued rape and other abuse by neglecting to report,” said Troy Newman, President of Operation Rescue. “Each of these abortionist require stiff discipline in order to impress it upon others that laws are meant to be followed and that they are not above it.”

Zoeller's complaint did not mention a third abortion of a 13-year-old that Klopfer reported after the legal date. The abortion took place in Fort Wayne in February 2012, but he did not report the procedure until July. Police subsequently filed two charges of child molestation against Ronte Lequan Latham, who was then 19-year-old.

Tensions this produced with another physician in his Fort Wayne office led to the first abortion facility closure of 2014.

The epidemic of underreporting presumed statutory rape is not limited to Klopfer. Between 58 and 75 percent of abortions performed on Indiana girls under the age of 14 were not reported in accordance with the law, according to an investigation by Amanda Gray of the South Bend Tribune.

Klopfer had a history of run-ins with authorities. In 2010 and 2012, state inspectors found that he allowed the bodies of aborted babies to be stored in a refrigerator alongside medicine the office gave to women who came in for the procedure.

The board has not yet set a date to hear evidence and make a judgment about their fitness to practice. If the board objects, it could respond by issuing a reprimand, suspending a license, or revoking the abortionists' medical license and imposing fines.

The accused may continue performing abortions until the board makes a final decision. 

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President Obama speaks at Planned Parenthood's national conference in 2013.
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Obama remakes the nation’s courts in his image

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By Dustin Siggins
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It has often been said that the Affordable Care Act (ACA) is President Obama's greatest achievement as president. However, that claim may soon take second place to his judicial nominees, and especially their effect on marriage in the United States.

In a new graphic, The Daily Signal notes that while President George W. Bush was able to get 50 nominees approved by this time in his second term, Obama has gotten more than 100 approved. According to The Houston Chronicle, "Democratic appointees who hear cases full time now hold a majority of seats on nine of the 13 U.S. Courts of Appeals. When Obama took office, only one of those courts had more full-time judges nominated by a Democrat."

Three of the five judges who struck down state marriage laws between February 2014 and the Supreme Court's Windsor decision in 2013 were Obama appointees, according to a CBS affiliate in the Washington, D.C. area. Likewise, the Windsor majority that overturned the Defense of Marriage Act included two Obama appointees, Justices Sonia Sotomayor and Elena Kagan. Obama has nominated 11 homosexual judges, the most of any president by far, says the National Law Journal.

Only one federal judge has opposed same-sex "marriage" since the Supreme Court's Windsor decision. He was appointed under the Reagan administration.

This accomplishment, aided by the elimination of Senate filibusters on judicial nominees, could affect how laws and regulations are interpreted by various courts, especially as marriage heads to a probable Supreme Court hearing on the constitutionality of state laws.

Democrats eliminated the filibuster for all judicial nominees except for Supreme Court candidates last year, saying Republicans were blocking qualified candidates for the bench. However, the filibuster was part of the reason Democrats were able to keep the number of approved Bush appointees so low.

The Supreme Court may hear multiple marriage questions in its 2015 cycle. 

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