Alex Hauber

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

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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Please, enough with the cult of pop stars. Our kids need real heroes.

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April 29, 2016 (LifeSiteNews) – Two things happen each time a significant pop culture figure dies: Christians attempt to dredge up some moderately conservative or traditional thing that figure said at some point during his long career, and mainstream media attempts to convince a society thoroughly bored with such things that the person in question was a ground-breaking radical. The two most recent examples are the androgynous David Bowie—a cringe-worthy and possibly blasphemous video of him dropping to his knees during a rock performance and uttering the Lord’s Prayer circulated just following his death--and the pop star Prince.

I’ve had to suppress my gag reflexes many times as I saw my Facebook newsfeed fill up with memes sporting quotes from Prince about his faith and articles announcing that the musician who “embraced gender fluidity before his time,” according to Slate and “will always be a gay icon” according to The Atlantic, was against gay marriage. Sure, maybe he was. But only a Christian community so shell-shocked by the rapid spread of the rainbow blitzkrieg and the catastrophic erosion of religious liberty would find this remarkable. After all, Barack Obama and Hillary Clinton said the same thing barely one election cycle ago. As one obituary celebrating Prince’s paradigm-smashing sexual performances written by Dodai Stewart put it:

Dig, if you will, a picture: The year is 1980. Many states still have sodomy laws. The radio is playing feel-good ear candy like Captain and Tennille and KC and the Sunshine Band. TV hits include the sunny, toothy blond shows Three’s Company and Happy Days. There’s no real word for “gender non-conforming.” But here’s what you see: A man. Clearly a man. Hairy, mostly naked body…a satiny bikini bottom. But those eyes. Rimmed in black, like a fantasy belly dancer. The full, pouty lips of a pin-up girl. Long hair. A tiny, svelte thing. Ethnically ambiguous, radiating lust. What is this? A man. Clearly a man. No. Not just a man. A Prince.

Right. So let’s not get too carried away, shall we? I know Christians are desperate to justify their addictions to the pop culture trash that did so much to sweep away Christian values in the first place and I know that latching on to the occasional stray conservative belief that may manifest itself in pop culture figures makes many feel as if perhaps we are not so weird and countercultural, but this bad habit we have of claiming these figures upon their passing is downright damaging.

After all, parents should be teaching their children about real heroes, titans of the faith who changed the world. Heroes of the early church who stood down tyrants, halted gladiatorial combat, and crusaded against injustice in a world where death was all the rage. These men and women were real rebels who stood for real values. If we want to point our children to people they should emulate, we should be handing them books like Seven Men: And the Secret of Their Greatness by the brilliant writer Eric Metaxas rather than the pop albums Purple Rain or Lovesexy by Prince. If parents spend their time glorifying the predecessors of Lady Gaga and Miley Cyrus instead of highlighting heroes like William Wilberforce, they can hardly be surprised when their children choose to emulate the former rather than the latter.

The mainstream media’s adulation of these pop stars is equally irritating. The unspoken truth of these obituaries is that the flamboyant antics of Prince and the rest of the so-called rebellious drag queens populating the rock n’ roll scene have been mainstream for a long time already. Want to see dozens of bizarre body piercings? Weird hairdos? Purple mohawks? Dudes with nail polish? Strange tattoos? Easy. Just go onto any university campus, or any public high school without a dress code. With headphones wedged firmly in their ear canals, they can pump the cleverly commercialized “counterculture” straight into their skulls 24 hours a day, 7 days a week.

More than that, some of these courageous rebels have actually sued their employers to ensure that they can let their establishment-smashing freak flag fly at work, too. An Edmonton woman with 22 visible body piercings complained that her employer was unfair because apparently she was being discriminated against “based on body modifications.” Yeah! The Man must be told, after all. And if he doesn’t agree, we will lawyer up. I wonder what the shrieking rebels of the early days would think about the snivelling children of the current grievance culture.

So these days, the media’s eulogizing about aging culture warriors who went mainstream a long time ago rings a bit hollow. After all, most rock n’ roll stars these days look tame compared to what shows up in the children’s section at Pride Week. Freaky is normal now. Normal is radical. Welcome to 2016.

When Christians are posting nostalgic tributes to the rebels who helped inoculate their children against the radical views of Christianity in the first place, you know that the victories of the counterculture are complete and Stockholm syndrome has set in.



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Target boycott climbs to over 1 million

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April 29, 2016 (LifeSiteNews) – Over 1 million people have signed a pledge to boycott Target over its new policy allowing men to access women’s bathrooms. 

The American Family Association’s Boycott Target petition gained traction immediately, reaching the one million mark in only nine days.

“Corporate America must stop bullying people who disagree with the radical left agenda to remake society into their progressive image,” said AFA President Tim Wildmon. “#BoycottTarget has resonated with Americans.  Target’s harmful policy poses a danger to women and children; nearly everyone has a mother, wife, daughter or friend who is put in jeopardy by this policy.  Predators and voyeurs would take advantage of the policy to prey on those who are vulnerable.  And it’s clear now that over one million customers agree.”

Target defended its policy in a statement saying that it believes everyone “deserves to be protected from discrimination, and treated equally” and earlier this week, a Target spokeswoman defended the policy as “inclusive.” 

The AFA said that unisex bathrooms are a common-sense alternative to allowing men unfettered access to women’s bathrooms.

“Target should keep separate facilities for men and women, but for the trans community and for those who simply like using the bathroom alone, a single occupancy unisex option should be provided,” the petition says. 

The AFA warned that Target’s new policy benefits sexual predators and poses a danger to women and children. 

“With Target publicly boasting that men can enter women's bathrooms, where do you think predators are going to go?” the petition asked. 

There have been numerous instances of predatory men accessing women’s bathrooms and intimate facilities in the wake of “transgender” bathroom policies allowing them to do so. 

“We want to make it very clear that AFA does not believe the transgender community poses this danger to the wider public,” said Wildmon. “Rather, this misguided and reckless policy provides a possible gateway for predators who are out there.”



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Amazing new video captures the flash of light the moment life begins

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CHICAGO, April 29, 2016 (LifeSiteNews) – Life begins with a spark – literally.

Researchers at Northwestern University have documented the striking event in a new video that accompanies a study published this week.

At the moment of conception, the egg releases massive amounts of zinc, which creates a spark that can be seen with the aid of a microscope.

“It was remarkable,” said Teresa Woodruff, a professor of obstetrics and gynecology at Northwestern University's medical school. “To see the zinc radiate out in a burst from each human egg was breathtaking.”

The research team had noted the zinc sparks before in mice eggs but had never observed the process in human beings.

“All of biology starts at the time of fertilization,” Woodruff said, “yet we know next to nothing about the events that occur in the human.”

One of the researchers, Northwestern chemistry professor Thomas O'Halloran, explained the science behind the process in 2014.

“The egg first has to stockpile zinc and then must release some of the zinc to successfully navigate maturation, fertilization and the start of embryogenesis,” he said. “On cue, at the time of fertilization, we see the egg release thousands of packages, each dumping a million zinc atoms, and then it's quiet.”

“Each egg has four or five of these periodic sparks,” O'Halloran said. “It is beautiful to see, orchestrated much like a symphony.”

Since the amount of zinc in an egg correlates with successful implantation and birth, the Northwestern researchers are highlighting that their research may be used to assist in vitro fertilization.

But that raises concerns given the grave moral issues with IVF, which involves creating numerous embryos that are either killed or frozen. Moral theologians also emphasize that IVF is an injustice even for the children who are born as a result, as they are created in a lab rather than in the union of man and woman.

The study may have far-reaching consequences the research team did not intend, such as strengthening public belief in the longstanding scientific consensus that life begins at the moment of conception/fertilization.

Many of those who saw the Northwestern video said it testifies to the beauty of life and the shallow lies that buttress the argument of abortion-on-demand.

“I saw this, and I was blown away by it,” said Rush Limbaugh on his nationally syndicated radio program Thursday afternoon. “For anybody in the mainstream media to openly admit that life begins at conception” defies arguments that an unborn child is only “tissue mass.”

Researchers released a separate video of the zinc spark taking place in a mammalian egg more than a year ago:

The paper, which is entitled “The Zinc Spark is an Inorganic Signature of Human Egg Activation,” was published by Scientific Reports on April 26.



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