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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Indiana Gov. Mike Pence signs the state's Religious Freedom Restoration Act.
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Indiana faces backlash as it becomes 20th state to protect religious liberty

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By Ben Johnson

INDIANAPOLIS, IN, March 27, 2015 (LifeSiteNews.com) – On Thursday, Indiana became the 20th state to prevent the government from forcing people of faith to violate their religious beliefs in business or the public square.

Gov. Mike Pence signed the Religious Freedom Restoration Act (SB 101) into law, saying the freedom of religion is a preeminent American value.

“The Constitution of the United States and the Indiana Constitution both provide strong recognition of the freedom of religion, but today, many people of faith feel their religious liberty is under attack by government action,” Pence said.

Gov. Pence, a possible dark horse candidate for president in 2016, cited court cases brought by religious organizations and employers, including Catholic universities, against the HHS mandate. “One need look no further than the recent litigation concerning the Affordable Care Act. A private business and our own University of Notre Dame had to file lawsuits challenging provisions that required them to offer insurance coverage in violation of their religious views.”

The new law could also prevent Christian business owners from being compelled to bake a cake or take photographs of a same-sex "marriage" ceremony, if doing so violates their faith. In recent years, business owners have seen an increased level of prosecution for denying such services, despite their religious and moral beliefs.

The state's pro-life organization applauded Pence for his stance. "Indiana's pro-life community is grateful to Gov. Mike Pence for signing the Religious Freedom Restoration Act into law,” said Indiana Right to Life's president and CEO Mike Fichter. “This bill will give pro-lifers a necessary legal recourse if they are pressured to support abortion against their deeply-held religious beliefs.”

“RFRA is an important bill to protect the religious freedom of Hoosiers who believe the right to life comes from God, not government,” he said.

The state RFRA is based on the federal bill introduced by Sen. Chuck Schumer, D-NY, and signed into law by President Bill Clinton in 1993. The Supreme Court cited the federal law when it ruled that Hobby Lobby had the right to refuse to fund abortion-inducing drugs, if doing so violated its owners' sincerely held religious beliefs.

In signing the measure – similar to the one Arizona Gov. Jan Brewer vetoed – Pence and the state of Indiana have faced a torrent of venom from opponents of the bill, who claim it grants a “right to discriminate” and raises the spectre of segregation.

"They've basically said, as long as your religion tells you to, it's OK to discriminate against people," said Sarah Warbelow, legal director of the Human Rights Campaign, a national homosexual pressure group.

The Disciples of Christ, a liberal Protestant denomination based in the state capital, has said it will move its 2017 annual convention if the RFRA became state law. The NCAA warned the bill's adoption “might affect future events” in the Hoosier state.

Pence denied such concerns, saying, "This bill is not about discrimination, and if I thought it legalized discrimination in any way I would've vetoed it."

The bill's supporters say that, under the Obama administration, it is Christians who are most likely to suffer discrimination.

"Originally RFRA laws were intended to protect small religious groups from undue burdens on practicing their faith in public life,” said Mark Tooley, president of the Institute on Religion and Democracy. “It was not imagined there would come a day when laws might seek to jail or financially destroy nuns, rabbis or Christian camp counselors who prefer to abstain from the next wave of sexual and gender experimentation. And there's always a next wave.”

The bill's supporters note that it does not end the government's right to coerce people of faith into violating their conscience in every situation. However, it requires that doing so has to serve a compelling government interest and the government must use the least restrictive means possible. “There will be times when a state or federal government can show it has a compelling reason for burdening religious expression – to ensure public safety, for instance,” said Sarah Torre, an expert at the Heritage Foundation. “But Religious Freedom Restoration Acts set a high bar for the government to meet in order to restrict religious freedom.”

Restricting the ability of government to interfere in people's private decisions, especially their religious decisions, is the very purpose of the Constitution, its supporters say.

"Religious freedom is the cornerstone of all liberty for all people,” Tooley said. “Deny or reduce it, and there are no ultimate limits on the state's power to coerce."

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Fight pornography. Beat pornography. And join the ranks of those who support their fellow men and women still fighting.
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Porn is transforming our men from protectors into predators. Fight back.

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By Jonathon van Maren

Since I’ve gotten involved in anti-pornography work, I’ve met countless men who struggle, fight, or have beaten pornography. Each person seems to deal with the guilt and shame that accompanies porn use in a different way—some deny that it’s “all that bad,” others pretend that they could “stop whenever they want,” many insist that “everyone is doing it,” and most, when pressed, admit to a deep sense of self-loathing.

One worry surfaces often in conversation: What do my past or current struggles with pornography say about me as a man? Can I ever move past this and have a meaningful and fulfilling relationship?

I want to address this question just briefly, since I’ve encountered it so many times.

First, however, I’ve written before how I at times dislike the language of “struggling” with pornography or pornography “addiction,” not because they aren’t accurate but because too often they are used as an excuse rather than an explanation. It is true, many do in fact “struggle” with what can legitimately be considered an addiction, but when this language is used to describe an interminable battle with no end (and I’ve met dozens of men for whom this is the case), then I prefer we use terminology like “fighting my porn habit.” A semantic debate, certainly, but one I think is important. We need to stop struggling with porn and start fighting it.

Secondly, pornography does do devastating things to one’s sense of masculinity. We know this. Pornography enslaves men by the millions, perverting their role as protector and defender of the more vulnerable and turning them into sexual cannibals, consuming those they see on-screen to satisfy their sexual appetites.

What often starts as mere curiosity or an accidental encounter can turn into something that invades the mind and twists even the most basic attractions. I’ve met porn users who can’t believe the types of things they want to watch. They haven’t simply been using porn. Porn has actively reshaped them into something they don’t recognize and don’t like. 

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Porn is this generation’s great assault on masculinity and the role of men in society. It is essential that we win this battle for the sake of society’s survival. Contrary to what the gender-bending and family-morphing progressive elites claim, good husbands and good fathers and good church leaders are necessary for a healthy society. But pornography is destroying marriages, creating distant and disconnected fathers, and, metaphoricaclly castrating men, hindering their ability and desire to make a positive difference in the society around us.

So, with this sobering set of facts in mind let’s return to the question: what do pornography struggles, past and present, say about a man?

The proper way to respond is with everything that is good about masculinity. We have to fight pornography as men have fought countless evils throughout the ages. We need to fight pornography to protect women, and wives, and children, and our society at large. This is how pornography threatens society, by castrating men, and turning them from protectors into predators. Rooting out the evil in our own lives allows us to better fulfill the role we are called to perform in the lives of others. Battling our own demons enables us to battle the wider cultural demons. Every day without porn is another bit of virtue built. Virtue is not something you’re born with. Virtues are habits that you build. And one day without porn is the first step towards the virtue of being porn-free.

Many men ask me if men who have had past porn addictions are cut out for being in a relationship or working in the pro-life movement or in other areas where we are called to protect and defend the weak and vulnerable. And the answer to that is an unequivocal yes. Our society needs men who know what it means to fight battles and win. Our society needs men who can say that they fought porn and they beat porn, because their families and their friends were too important to risk. Our society needs men who rose to the challenge that the evils of their generation threw at them, and became better men as the result. And our society needs men who can help their friends and their sons and those around them fight the plague of pornography and free themselves from it, too—and who can understand better and offer encouragement more relevant than someone who has fought and been freed themselves?

So the answer to men is yes. Fight pornography. Beat pornography. And join the ranks of those who support their fellow men and women still fighting. Lend them support and encouragement. We cannot change the fact that porn has left an enormous path of destruction in its wake. But we can change the fact that too many people aren’t fighting it. We can change our own involvement. And we can rise to the challenge and face this threat to masculinity with all that is good about masculinity.

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Red Alert!

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By John-Henry Westen

I don’t like having to do this, but we have always found it best to be totally upfront with our readers: our Spring fundraising campaign is now worrying us! 

You see, with just 6 days remaining, we have only raised 30% of our goal, with $125,000 still left to raise. That is a long ways to go yet.

We have no choice but to reach our minimum goal of $175,000 if we are going to be able to continue serving the 5+ million readers who rely on us every month for investigative and groundbreaking news reports on life, faith and family issues.

Every year, LifeSite readership continues to grow by leaps and bounds. This year, we are again experiencing record-breaking interest, with over 6 million people visiting our website last month alone!

This unprecedented growth in turn creates its own demand for increased staff and resources, as we struggle to serve these millions of new readers.

And especially keep this in mind. As many more people read LifeSite, our mission of bringing about cultural change gets boosted. Our ultimate goal has always been to educate and activate the public to take well-informed, needed actions.

Another upside to our huge growth in readers is that it should be that much easier to reach our goal. To put it simply: if each person who read this one email donated whatever they could (even just $10) we would easily surpass our goal! 

Today, I hope you will join the many heroes who keep this ship afloat, and enable us to proclaim the truth through our reporting to tens of millions of people every year!

Your donations to LifeSite cause major things to happen! We see that every day and it is very exciting. Please join with us in making a cultural impact with a donation of ANY AMOUNT right now. 

You can also donate by phone or mail. We would love to hear from you!

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