Alex Hauber

My Trisomy 18 son is not alive because of a miracle. He is alive because we chose life for him.

Alex Hauber
By Alex Hauber
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February 2, 2012 (LifeSiteNews.com) - I am the proud father of a three year old son named Lane who was born with full Trisomy 18. Many within the medical community would say that boys with this condition - the same genetic condition that Rick Santorum’s daughter Bella has - never survive. Many would say that Lane’s life is a ‘miracle.’

The fact that Lane is alive is not a miracle. Lane is alive because my wife and I chose life for him. We made the decision to provide the same medical treatment for Lane as would be provided to another child without a discriminatory genetic label. Karen and Rick Santorum made the same decision for Bella.

From the time that the genetic conditions Trisomy 13 and Trisomy 18 were first identified in the 1960’s, it seems the children who receive these diagnoses have been abandoned by the medical system, likely due to the certainty that survivors had severe disability. A publication in the Lancet in 1992 stated, “A newborn infant with trisomy 18 should be considered as a patient with a hopeless outlook who ought not to be subjected to invasive procedures.(i)” Along the way, someone coined the phrase “incompatible with life” in reference to both Trisomy 13 and 18 and that seems to have stuck.

In 2003, the truth began to emerge. In a paper titled, “Lethal Language, Lethal Decisions(ii)” physicians who are leaders in pediatric ethics noted that medicine had evolved since the 1960’s and that treatment now existed for some of the conditions which many children with Trisomy 13 and 18 died from. They suggested that calling these conditions “lethal anomalies” is “not only inaccurate, it is also dangerous; by portraying a medical condition what is in fact a judgement about the child’s quality of life, it wrests from the parents a decision that only parents can make.”

There is a wide spectrum in the manifestation of Trisomy 13 and 18. Sadly, many children born with these conditions are severely afflicted and live a short, but very valued life. Yet many children are left to die - not because they can’t be helped - but because the doctors withhold treatment on account of the genetic label. Parents are told that nothing can be done, though this is often not true.

It was a great surprise to everyone when a national review of pediatric cardiac surgeries in 2004(iii) revealed that 35 children with Trisomy 13 and 18 had obtained cardiac surgery and survived - at a rate of 91%! So much for universally “lethal” and “incompatible with life”!

The internet has allowed parents of these relatively rare conditions to network like never before. Blogs, websites and social networking sites like Facebook devoted to Trisomy 13 and 18 have grown exponentially in the past decade. Parents who receive a diagnosis of these conditions are sometimes told “there are no survivors” or “children who survive live a life of unremitting suffering.” Many parents who receive such a diagnosis will search online for more information. It won’t take long before they discover that there are many happy living children who have families who love to care for them.

Last year, Dr. Lawrence Fenton, a retired neonatologist, took the time to attend the annual conference for trisomy families. He was so surprised and delighted to meet the children living so well with trisomy 13 and 18 and their siblings and parents that he published a commentary(iv) about his experience. With respect to assessment of quality of life, he wrote, “Smiles and laughter need no score pad.” He added, “They [the trisomy parents] deserve our respect our affirmation, our support and part of our humanity as we true to do our part to make their lives and the lives of their children as good as can be.”

The most important truth about children like Bella and others with trisomy 13 and 18 is the beauty of their lives. Research done on over 300 parents of children in our community(v) revealed that most of us were told by medical providers that our child was incompatible with life, would live a life of suffering, or would be a vegetable. Yet parents responded overwhelmingly that our children are happy, enrich our families, improve our marriages and have a positive effect on their siblings.

My son, Lane, was diagnosed with Full Trisomy 18 at three days old. Prior to getting the results of the FISH test, the hospital told me that Lane’s heart condition could be repaired. However, after the results came back, the hospital then informed me that there wasn’t anything more the hospital could do for my son. So I took Lane home at nine days old on hospice, but Lane had another plan. He continued to get stronger every day, and so as his strength and fight improved…so did my fight to do anything I could to give my son the best quality of life.

My journey with Lane has given me a new perspective on what the pursuit of happiness really means…take each day as it comes, enjoy the little things, live…love…laugh to the fullest. He has taught my family how to work as a team, to treat all life with respect, patience, and to truly love unconditionally! As hard as this journey with Lane can get at times, I’ve been blessed to realize the strength that I possess as a human being and as a father to the most beautiful spirit I have ever encountered. This journey has been so worth the hardships because my son has taught me to be a better man and father. In honor of my son, I have dedicated my life to spreading awareness of Trisomy, and so Trisomy Advocacy Group was born.

In John 9, Jesus tells his disciples that a man is blind not because his parents sinned but “so that the works of God might be displayed in him.” It is these works of God that are the true miracle of the lives of Lane and Bella.

Jesus Heals a Man Born Blind
1 As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

Footnotes

(i) Bos AP, Broers CJ et al, Avoidance of emergency surgery in newborn infants with trisomy 18, Lancet 1992 Apr 11;339(8798):913-5
(ii) Koogler TK, Wilfond BS, Ross LF. Lethal language, lethal decisions. Hastings Cent Rep. 2003 Mar-Apr;33(2):37-41.
(iii) Graham EM, Bradley SM, Shirali GS, Hills CB, Atz AM; Pediatric Cardiac Care Consortium. Effectiveness of cardiac surgery in trisomies 13 and 18 (from the Pediatric Cardiac Care Consortium). Am J Cardiol. 2004 Mar 15;93(6):801-3.
(iv) Fenton LJ. Trisomy 13 and 18 and quality of life: treading “softly”. Am J Med Genet A. 2011 Jul;155A(7):1527-8.
(v) Our Children Are Not a Diagnosis”: Parents Judging Life with Trisomy 13 and 18. Annie Janvier, Barbara Farlow, Benjamin Wilfond. Presented at 2011 Pediatric Academic Societies Meeting, Denver CO


Alex Hauber is the president and founder of the Trisomy Advocacy Group whose mission is to advocate for the Trisomy community by empowering families and the medical community to make informed decisions regarding the care of Trisomy children. Please go here.

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Lisa Bourne

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Pressure mounts as Catholic Relief Services fails to act on VP in gay ‘marriage’

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By Lisa Bourne
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Rick Estridge, Catholic Relief Services' Vice President of Overseas Finance, is in a same-sex "marriage," public records show. Twitter

BALTIMORE, MD, April 24, 2015 (LifeSiteNews.com) -- Nearly a week after news broke that a Catholic Relief Services vice president had contracted a homosexual “marriage” while also publicly promoting homosexuality on social media in conflict with Church teaching, the US Bishops international relief agency has taken no apparent steps to address the matter and is also not talking.

CRS Vice President of Overseas Finance Rick Estridge entered into a homosexual “marriage” in Maryland the same month in 2013 that he was promoted by CRS to vice president, public records show.

Despite repeated efforts at a response, CRS has not acknowledged LifeSiteNews’ inquiries during the week. And the agency told ChurchMilitant.com Thursday that no action had been taken beyond discussion of the situation and CRS would have no further comment.

"Nothing has changed,” CRS Senior Manager for Communications Tom said. “No further statement will be made."

LifeSiteNews first contacted CRS for a response prior to the April 20 release of the report and did not receive a reply, however Estridge’s Facebook and LinkeIn profiles were then removed just prior to the report’s release.

CRS also did not acknowledge LifeSiteNews’ follow-up inquiry later in the week.

“Having an executive who publicly celebrates a moral abomination shows the ineffectiveness of CRS' Catholic identity training,” Lepanto Institute President Michael Hichborn told LifeSiteNews. “How many others who hate Catholic moral teaching work at CRS?”

CRS did admit it was aware Estridge was in a “same-sex civil marriage” to Catholic News Agency (CNA) Monday afternoon, and confirmed he was VP of Overseas Finance and had been with CRS for 16 years.

“At this point we are in deliberations on this matter,” Price told CNA that day.

ChurchMilitant.com also reported that according to its sources, it was a well-known fact at CRS headquarters in Baltimore that Estridge was in a homosexual “marriage.” 

“There is no way CRS didn't know one of its executives entered into a mock-marriage until we broke the story,” Hichborn said. “The implication is clear; CRS top brass had no problem with having an executive so deliberately flouting Catholic moral teaching.”

“The big question is,” Hichborn continued, “what other morally repugnant matters is CRS comfortable with?”

While the wait continues for the Bishops’ relief organization to address the matter, those behind the report and other critics of prior instances of CRS involvement in programs and groups that violate Church principles continue to call for a thorough and independent review of the agency programs and personnel.

“How long should it take to call an employee into your office, tell him that his behavior is incompatible with the mission of the organization, and ask for his resignation?” asked Population Research Institute President Steven Mosher. “About thirty minutes, I would say.”

“The Catholic identity of CRS is at stake,” Hichborn stated. “If CRS does nothing, then there is no way faithful Catholics can trust the integrity of CRS's programs or desire to make its Catholicity preeminent.” 

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Thousands of marriage activists gathered in D.C. June 19, 2014 for the 2nd March for Marriage. Dustin Siggins / LifeSiteNews.com
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Watch the March for Marriage online—only at LifeSiteNews

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WASHINGTON, D.C., April 24, 2015 (LifeSiteNews.com) -- At noon on Saturday, the National Organization for Marriage (NOM) and dozens of cosponsors, coalition partners, and speakers will launch the third annual March for Marriage. Thousands of people are expected to take place in this important event to show the support real marriage has among the American people.

As the sole media sponsor of the March, LifeSiteNews is proud to exclusively livestream the March. Click here to see the rally at noon Eastern Time near the U.S. Capitol, and the March to the Supreme Court at 1:00 Eastern Time.

And don't forget to pray that God's Will is done on Tuesday, when the Supreme Court hears arguments about marriage!

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Hillary Clinton: ‘Religious beliefs’ against abortion ‘have to be changed’

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By Ben Johnson

NEW YORK CITY, April 24, 2015 (LifeSiteNews.com) – Speaking to an influential gathering in New York City on Thursday, Hillary Clinton declared that “religious beliefs” that condemn "reproductive rights," “have to be changed.”

“Yes, we've cut the maternal mortality rate in half, but far too many women are still denied critical access to reproductive health,” Hillary told the Women in the World Summit yesterday.

Liberal politicians use “reproductive health” as a blanket term that includes abortion. However, Hillary's reference echoes National Organization for Women (NOW) president Terry O’Neill's op-ed from last May that called abortion “an essential measure to prevent the heartbreak of infant mortality.”

The Democratic presidential hopeful added that governments should throw the power of state coercion behind the effort to redefine traditional religious dogmas.

“Rights have to exist in practice, not just on paper. Laws have to be backed up with resources, and political will,” she said. “Deep-seated cultural codes, religious beliefs, and structural biases have to be changed.”

The line received rousing applause at the feminist conference, hosted in Manhattan's Lincoln Center by Tina Brown.

She also cited religious-based objections to the HHS mandate, funding Planned Parenthood, and the homosexual and transgender agenda as obstacles that the government must defeat.

“America moves ahead when all women are guaranteed the right to make their own health care choices, not when those choices are taken away by an employer like Hobby Lobby,” she said. The Supreme Court ruled last year that closely held corporations had the right to opt out of the provision of ObamaCare requiring them to provide abortion-inducing drugs, contraceptives, and sterilization to employees with no co-pay – a mandate that violates the teachings of the Catholic Church and other Christian bodies.

Clinton lamented that “there are those who offer themselves as leaders...who would defund the country's leading provider of family planning,” Planned Parenthood, “and want to let health insurance companies once again charge women just because of our gender.”

“We move forward when gay and transgender women are embraced...not fired from good jobs because of who they love or who they are,” she added.

It is not the first time the former first lady had said that liberal social policies should displace religious views. In a December 2011 speech in Geneva, then-Secretary of State Hillary Clinton said perhaps the “most challenging issue arises when people cite religious or cultural values as a reason to violate or not to protect the human rights of LGBT citizens.” These objections, she said, are “not unlike the justification offered for violent practices towards women like honor killings, widow burning, or female genital mutilation.”

While opinions on homosexuality are “still evolving,” in time “we came to learn that no [religious] practice or tradition trumps the human rights that belong to all of us.”

Her views, if outside the American political mainstream, have been supported by the United Nations. The UN Population Fund stated in its 2012 annual report that religious objections to abortion-inducing drugs had to be overcome. According to the UNFPA report, “‘duty-bearers’ (governments and others)” have a responsibility to assure that all forms of contraception – including sterilization and abortion-inducing ‘emergency contraception’ – are viewed as acceptable – “But if they are not acceptable for cultural, religious or other reasons, they will not be used.”

Two years later, the United Nations' Committee on the Rights of the Child instructed the Vatican last February that the Catholic Church should amend canon law “relating to abortion with a view to identifying circumstances under which access to abortion services may be permitted.”

At Thursday's speech, Hillary called the legal, state-enforced implementation of feminist politics “the great unfinished business of the 21st century,” which must be accomplished “not just for women but for everyone — and not just in far away countries but right here in the United States.”

“These are not just women's fights. These have to be America's fights and the world's fights,” she said. “There's still much to be done in our own country, much more to be done around the world, but I'm confident and optimistic that if we get to work, we will get it done together.”

American critics called Clinton's suggestion that a nation founded upon freedom of religion begin using state force to change religious practices unprecedented.

“Never before have we seen a presidential candidate be this bold about directly confronting the Catholic Church's teachings on abortion,” said Bill Donohue of the Catholic League.

“In one sense, this shows just how extreme the pro-abortion caucus actually is,” Ed Morrissey writes at HotAir.com. “Running for president on the basis of promising to use the power of government to change 'deep seated cultural codes [and] religious beliefs' might be the most honest progressive slogan in history.”

He hoped that, now that she had called for governments to change religious doctrines, “voters will now see the real Hillary Clinton, the one who dismisses their faith just the same as Obama did, and this time publicly rather than in a private fundraiser.”

Donohue asked Hillary “to take the next step and tell us exactly what she plans to do about delivering on her pledge. Not only would practicing Catholics like to know, so would Evangelicals, Orthodox Jews, Muslims, and all those who value life from conception to natural death.”

You may watch Hillary's speech below.

Her comments on religion begin at approximately 9:00. 

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