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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A Planned Parenthood facility in Denver, Colorado
Dustin Siggins Dustin Siggins Follow Dustin

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Colorado judge tosses suit alleging Planned Parenthood used state funds to pay for abortions

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By Dustin Siggins

Alliance Defending Freedom "will likely appeal" a Monday court decision dismissing their suit alleging Planned Parenthood of the Rocky Mountains illegally used state funds to pay for abortions, an ADF lawyer told LifeSiteNews.

The ADF lawsuit claims that $1.4 million went from state government agencies to a Planned Parenthood abortion affiliate through Planned Parenthood of the Rocky Mountains.

Denver County District Court Judge Andrew McCallin dismissed the case on the basis that ADF could not prove the funds paid for abortions. But ADF maintains that funding an abortion facility is indirectly paying for abortions, which violates state law.

ADF senior counsel Michael Norton -- whose wife, former Colorado Lieutenant Governor Jane Norton, filed the lawsuit – told LifeSiteNews that "no one is above the law, including Colorado politicians who are violating our state’s constitution by continuing to fund Planned Parenthood’s abortion business with state taxpayer dollars."

"The State of Colorado even acknowledges that about $1.4 million of state taxpayer dollars flowed from Colorado government agencies through Planned Parenthood to its abortion affiliate. The Denver court seems to have agreed with that fact and yet granted motions to dismiss based on a technicality," said Norton.

According to Colorado law, "no public funds shall be used by the State of Colorado, its agencies or political subdivisions to pay or otherwise reimburse, either directly or indirectly, any person, agency or facility for the performance of any induced abortion." There is a stipulation that allows for "the General Assembly, by specific bill, [to] authorize and appropriate funds to be used for those medical services necessary to prevent the death of either a pregnant woman or her unborn child under circumstances where every reasonable effort is made to preserve the life of each."

According to court documents, the Colorado law was affirmed by state voters in 1984, with an appeal attempt rejected two years later. In 2001, an outside legal firm hired by Jane Norton -- who was lieutenant governor at the time -- found that Planned Parenthood was "subsidizing rent" and otherwise providing financial assistance to Planned Parenthood Services Corporation, an abortion affiliate. After the report came out, and Planned Parenthood refused to disassociate itself from the abortion affiliate, the state government stopped funding Planned Parenthood.

Since 2009, however, that has changed, which is why the lawsuit is filed against Planned Parenthood, and multiple government officials, including Democratic Colorado Gov. John Hickenlooper.

According to ADF legal counsel Natalie Decker, the fact that Planned Parenthood sent funds to the abortion affiliate should have convinced McCallin of the merits of the case. "The State of Colorado and the Denver court acknowledged that about $1.4 million of state taxpayer dollars, in addition to millions of 'federal' tax dollars, flowed from Colorado government agencies through Planned Parenthood to its abortion affiliate," said Decker.

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"Without even having the facts of the case developed, the Denver court seems to have granted motions to dismiss filed by the State of Colorado and Planned Parenthood on grounds the term 'indirectly' could not mean what Ms. Norton and Governor Owens said it meant in 2002 when they defunded Planned Parenthood."

"That, of course, is the plain meaning of Colo. Const., Art. V, § 50 which was implemented by the citizens of Colorado, and the reason for Ms. Norton’s lawsuit."

Decker told LifeSiteNews that "Colorado law is very clear," and that the state law "prohibits Colorado tax dollars from being used to directly or indirectly pay for induced abortions."

She says her client "has been denied the opportunity to fully develop the facts of the case and demonstrate exactly what the Colorado tax dollars have been used for." Similarly, says Decker, it is not known "exactly what those funds were used for. At this time, there is simply no way to conclude that tax dollars have not been used to directly pay for abortions or abortion inducing drugs and devices."

"What we do know is that millions of Colorado tax dollars have flowed through Planned Parenthood to its abortion affiliate, which leads to the inescapable conclusion that those tax dollars are being used to indirectly pay for abortions."

A spokesperson for Planned Parenthood of the Rocky Mountains did not return multiple requests for comment about the lawsuit.

The dismissal comes as Planned Parenthood fights an investigation by the state's Republican attorney general over a video by Live Action, as well as a lawsuit by a mother whose 13-year old daughter had an abortion in 2012 that she alleges was covered up by Planned Parenthood. The girl, who was being abused by her stepfather, was abused for months after the abortion.

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Steve Weatherbe

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Fledgling high-tech pro-life group marks 2,000 babies saved: 2-3 saved per day

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Online for Life, the Dallas-based pro-life marketing agency, saved its two-thousandth unborn baby earlier this year and is well on its way to saving its three thousandth by 2015.

“We are getting better all the time at what we do,” says founder Brian Fisher. “It used to be one baby saved every four to six weeks and now its two or three a day.”

But the most significant save? “It was the very first one,” he says, recalling the phone call from a crisis centre a month after OFL’s 2012 startup.  “And for me personally it was just a massive turning point … because [of] all the work and the money and testing and the volunteers and everything that led up to that moment. All the frustration of that was washed away in an instant because a child had been rescued that was about to be killed.”

Though increasing market savvy has led Online for Life to expand offline, the core of the non-profit, donor-financed operation remains SEO -- search engine optimization -- targeting young women who have just discovered they are pregnant and gone onto the Web to find the nearest abortion clinic.

Instead, they find the nearest crisis pregnancy center at the top of their results page. Since OFL went online it has linked with a network of 41 such centers, including two of its own it started this year, in a positive feedback loop that reinforces effective messaging first at the level of the Web, then at the first telephone call between the clinic and the pregnant woman, and finally at the first face-to-face meeting.

“Testing is crucial,” says Fisher. “We test everything we do.” Early on, Online for Life insisted the clinics it served have an ultrasound machine, because the prevailing wisdom in the prolife movement was that “once they saw their baby on ultrasound, they would drop the idea of having an abortion.” While the organization still insists on the ultrasound, its own testing and feedback from the CPCs indicates that three quarters of the women they see already have children. “They’ve already seen their own children on ultrasound and are still planning to abort.” So ultrasound images have lost their punch.

OFL has had to move offline to reach a significant minority who have neither computers, tablets, or cell phones.  Traditional electronic media spots as well as bus ads and billboards carry the message to them.

As well, says Fisher, “unwanted pregnancy used to be a high-school age problem; now that’s gone down in numbers and the average age of women seeking abortion has gone up to 24.” By that age, he says, they are “thoroughly conditioned by the abortion culture. Even before they got pregnant, they have already decided they would have an abortion if they did get pregnant.”

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What they need—and fast, in the first two minutes of the first phone call—is sympathy, support, and a complete absence of judgement. Online for Life is always gathering information from its network on what responses are most effective—and this can vary city to city. The organization offers training to clinic volunteers and staff that stresses a thorough knowledge of the services on tap. “Any major city has all sorts of services—housing, education, health—available,” says Fisher.

The problem that OFL was designed to address was the crisis pregnancy centers’ market penetration. Three percent of women with unwanted pregnancies were reaching out to the CPCs, and seven per cent of those who did reach out were having their babies. “So about 2.1 children were being saved for every 1,000 unwanted pregnancies,” says Fisher. “That’s not nearly enough.”

So Fisher and two fellow volunteers dreamed of applying online marketing techniques to the problem in 2009. Three years later Fisher was ready to leave his executive position at an online marketing agency to go full-time with the life-saving agency. Now they have 63 employees, most of them devoted to optimizing the penetration in each of the markets served by their participating crisis centers.

The results speak for themselves. Where OFL has applied its techniques, especially with its own clinics, as many as 15-18 percent of the targeted population of women seeking abortions get directed to nearby crisis pregnancy centers. “It depends on the centres’ budgets and on how many volunteers they have to be on the phones through the day and night,” he says. “But we are going to push it higher. We hope to save our 2,500th child by the end of the year.”

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Shock: UK mom abandons disabled daughter, keeps healthy son after twin surrogacy

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By Pete Baklinski

A UK woman who is the biological mother of twins born from a surrogate mom, has allegedly abandoned one of the children because she was born with a severe muscular condition, while taking the girl's healthy sibling home with her.

The surrogate mother, also from the UK — referred to as "Jenny" to protect her identity — revealed to The Sun the phone conversation that took place between herself and the biological mother over the fate of the disabled girl.

“I remember her saying to me, “She’d be a f****** dribbling cabbage! Who would want to adopt her? No one would want to adopt a disabled child,’” she said.

Jenny, who has children of her own, said she decided to become a surrogate to “help a mother who couldn’t have children.” She agreed to have two embryos implanted in her womb and to give birth for £12,000 ($20,000 USD).

With just six weeks to the due date, doctors told Jenny she needed an emergency caesarean to save the babies. It was not until a few weeks after the premature births that the twin girl was diagnosed with congenital myotonic dystrophy.

When Jenny phoned the biological mother to tell her of the girl’s condition, the mother rejected the girl.

Jenny has decided along with her partner to raise the girl. They have called her Amy.

“I was stunned when I heard her reject Amy,” Jenny said. “She had basically told me that she didn’t want a disabled child.”

Jenny said she felt “very angry” towards the girl’s biological parents. "I hate them for what they did.”

The twins are now legally separated. A Children and Family Court has awarded the healthy boy to the biological mother and the disabled girl to her surrogate.

The story comes about two weeks after an Australian couple allegedly abandoned their surrogate son in Thailand after he was born with Down syndrome, while taking the healthy twin girl back with them to Australia.

Rickard Newman, director of Family Life, Pro-Life & Child and Youth Protection in the Diocese of Lake Charles, called the Australian story a “tragedy” that “results from a marketplace that buys and sells children.”

“Third-party reproduction is a prism for violations against humanity. IVF and the sperm trade launched a wicked industry that now includes abortion, eugenics, human trafficking, and deliberate family fragmentation,” he said. 

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