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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‘Little miracles’: Mom gives birth to naturally-conceived quintuplets after refusing ‘selective reduction’

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An ultrasound of the five different compartments, each with its own baby, inside Kim's womb.

AUSTRALIA, February 5, 2016 (LifeSiteNews) -- A 26-year-old Australian mom has given birth to five healthy babies, all conceived naturally, after refusing the doctor’s advice that she must abort three of them in order to give the remaining two a better chance at life. 

“After my initial ultrasound I was told I could consider the selection method to give 2 babies the best chance in life,” wrote mom Kim Tucci in a Facebook post last September. 

“I watched a YouTube video on the procedure and I cried. I could never do that! Was I selfish for not giving two the chance of 100% survival? All I knew is that I already love them and that every heart beat I heard I connect with them more. For me life starts when a heart starts beating and all I know for sure is that I will do whatever it takes to bring them into this world healthy,” she wrote. 

Last Thursday Kim and her husband Vaughn welcomed the five new members into their family — one boy and four girls —increasing the number of their children from 3 to 8. The babies were born at 30 weeks, 10 weeks early, due to insufficient space in Kim’s womb. They weighed on average about 2.5 pounds. 

The quintuplets’ story began last March, after Kim and Vaughn had been trying for six months to conceive just one more child for their family. Due to health complications, Kim wondered if she would ever become a mother again. 

After what she thought was an extra long cycle, she decided to take a pregnancy test. 

“I was feeling tired and a little nauseated and thought I would take a pregnancy test just to get the ‘what if’ out of my head. To my shock and utter excitement it was positive,” she wrote on a Facebook post.

The parents got the shock of their lives when doctors confirmed in an ultrasound examination that there was not one baby, but five. 

“After a long wait for the ultrasound we finally went in. The sonographer told me there were multiple gestational sacks, but she could only see a heart beat in two. I was so excited! Twins!”

“I was moved to another machine for a clearer view and had the head doctor come in and double check the findings. She started to count, one, two, three, four, five. Did i hear that correctly? Five? My legs start to shake uncontrollably and all i can do is laugh. The sonographer then told me the term for five is ‘quintuplets,’” Kim wrote.

Even though Kim began to feel stretched to the limit with all those human lives growing inside her, she chose to focus on her babies, and not herself, referring to them as “my five little miracles.” 

“It's getting harder as each day passes to push through the pain, every part of my body aches and sleeping is becoming very painful. No amount of pillows are helping support my back and belly. Sometimes I get so upset that I just want to throw my hands up and give in.”

“Sometimes my pelvis becomes so stiff I can barely walk and my hips feel like they are grinding away constantly. I'm finding it hard to eat as I basically have no room left in my stomach, and the way it is positioned it's pushed all the way back with the babies leaning against it.” 

“My skin on my belly is so stretched its painful and hot to touch. It literally feels like I have hives! No amount of cream helps relieve the discomfort. I have a lot of stretch marks now. Dealing with such a huge change in my body is hard.” 

“Is it all worth it? Yes!!!! I will keep pushing through,” she wrote in one Facebook post days before the babies were born. 

The newborns' names are Keith, Ali, Penelope, Tiffany, and Beatrix. They were born at King Edward Memorial Hospital in Subiaco, Western Australia. Mother and babies are reported to be doing well. 



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UN rights chief tells Catholic countries to legalize abortion over Zika virus: bishops and cardinal react

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GENEVA, February 5, 2016 (LifeSiteNews) -- The United Nations, following the lead of international abortion activists, is now urging Latin American countries hit by the mosquito-borne Zika virus to lift restrictions on abortion for pregnant women who have contacted the virus and whose pre-born children may be at risk for birth defects, including having smaller than normal heads. 

The UN human rights office said today that it is not enough for South American countries to urge women to postpone pregnancy without also offering them abortion as a final solution. 

“How can they ask these women not to become pregnant, but not offer… the possibility to stop their pregnancies?” UN spokeswoman Cecile Pouilly told reporters. 

UN human rights chief Zeid Ra’ad al-Hussein said that governments should make available contraception and abortion services.

“Laws and policies that restrict (women’s) access to these services must be urgently reviewed in line with human rights obligations in order to ensure the right to health for all in practice,” he said.

But Brazil’s bishops strongly asserted yesterday that efforts should be made to eradicate the virus, not the people who may be infected by it. 

The disease is “no justification whatsoever to promote abortion,” they said in a statement, adding that it is not morally acceptable to promote abortion “in the cases of microcephaly, as, unfortunately, some groups are proposing to the Supreme Federal Court, in a total lack of respect for the gift of life.”

Honduras Cardinal Oscar Rodriguez Maradiaga has also come out strongly against the notion of “therapeutic abortions” as a response to the problem. Unlike Brazil where abortion is legal in the case of rape or health of the mother, abortion remains entirely illegal in Honduras.

“We should never talk about ‘therapeutic’ abortion,” the cardinal said in a homily at a February 3 Mass in Suyap. “Therapeutic abortion doesn’t exist. Therapeutic means curing, and abortion cures nothing. It takes innocent lives,” he said. 

While the World Health Organization (WHO) declared an international public health emergency February 1 on account of concerns over the virus, critics have pointed out, however, that not one death as resulted from the virus. Even on WHO’s own website the virus is described in mild terms. 

“It causes mild fever and rash. Other symptoms include muscle pain, joint pain, headache, pain behind the eyes and conjunctivitis. Zika virus disease is usually mild, with symptoms lasting only a few days,” the website states. “To date, there have been no reported deaths associated with Zika virus,” it added. 

Critics suspect that the crisis is being manipulated to advance an anti-human agenda on the pre-born. 

“Is Zika, actually, a hideous virus that threatens to spread uncontrollably across the world creating an army of disabled children with tiny heads and low IQ’s? Or might this be a willful misinterpretation of the scarce data to manipulate public opinion and legislatures?” wrote pro-life critic Mei-Li Garcia earlier this week.

“It becomes very clear that the publicity surrounding this story has a very little to do with medicine and a lot to do with a convenient crisis that is being used by those pushing for the legalization of abortion around the world,” she wrote.



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Hillary’s litmus test for Supreme Court picks: They must ‘preserve Roe v. Wade’

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DERRY, NH, February 5, 2016 (LifeSiteNews) - Hillary Clinton has a litmus test for Supreme Court nominees - several, in fact. At a Democratic event on Wednesday, Clinton unveiled her criteria in selecting a judge for the nation's highest court.

“I do have a litmus test, I have a bunch of litmus tests," she said.

"We’ve got to make sure to preserve Roe v. Wade, not let it be nibbled away or repealed,” she said.

There have been over 58,000,000 abortions since the 1973 court ruling legalizing abortion in all 50 states, according to National Right to Life.

That echoes her recent call to arms speech before Planned Parenthood last month, when she stated that taxpayers must fund abortion-on-demand in order to uphold the "right" of choice.

“We have to preserve marriage equality,” Clinton said, referring to last summer's Obergefell v. Hodges case, a 5-4 ruling that redefined marriage nationwide. “We have to go further to end discrimination against the LGBT community."

Her views differentiate her from the Republican front runners. Ted Cruz has called the court's marriage ruling "fundamentally illegitimate," and Donald Trump told Fox News Sunday this week that he would "be very strong on putting certain judges on the bench that I think maybe could change things." Marco Rubio has said he won't "concede" the issue to the one-vote majority.

All Republican presidential hopefuls say they are pro-life and will defund Planned Parenthood.

Her husband, Bill Clinton, raised the makeup of the Supreme Court early last month in New Hampshire, saying it receives "almost no attention" as a campaign issue.

On Wednesday, Hillary said "the next president could get as many as three appointments. It’s one of the many reasons why we can’t turn the White House over to the Republicans again.”

Clinton said her judicial appointees must also reverse the Citizens United ruling on campaign finance and oppose a recent decision striking down a portion of the 1965 Voting Rights Act. In 2013's Shelby County v. Holder, justices struck down Section 4(b) of the act, which said that certain states and jurisdictions had to obtain permission from the federal government before changing their voting laws.

At one time, most politicians frowned upon any "litmus test" for judicial nominees, emphasizing the independence of the third branch of government. "I don't believe in litmus tests," Jeb Bush told Chuck Todd last November.

But with the rise of an activist judiciary in the middle of the 20th century, constitutionalists have sought to rein in the power of the bench.



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