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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Thaddeus Baklinski Thaddeus Baklinski Follow Thaddeus

African researchers warn early sexual activity increases risk of cancers

Thaddeus Baklinski Thaddeus Baklinski Follow Thaddeus
By Thaddeus Baklinski

A report on rising cancer rates in Africa delivered at a conference in Namibia last week warned that oral contraceptives and engaging in sexual activity from a young age lead to an increased risk of breast and reproductive system cancers.

Researchers presented the "2014 Integrated Africa Cancer Fact Sheet & Summary Score Card" during the 8th Stop Cervical, Breast and Prostate Cancer in Africa (SCCA) conference, held in Windhoek, Namibia from July 20 to 22, noted that cancer is a growing health problem in many developing countries and that breast and cervical cancer are the most common forms affecting African women.

The report said that sexually transmitted diseases (STDs) play a major role in reproductive system cancers and that young girls who engage in sexual activity risk getting, among other STDs, the human papilloma virus (HPV), some strains of which are linked to cervical cancer.

The report said although HPV infections are common in healthy women, they are usually fought off by the body’s immune system, with no discernible symptoms or health consequences.

The Cancer Association of South Africa points out that of the scores of HPV types, 14 of the more than 40 sexually transmitted varieties are considered "high risk" for causing serious illness, while two, HPV-16 and HPV-18, are linked to cervical cancer.

“Long-term use of oral contraceptives is also associated with increased risk [of cancer], and women living with HIV-AIDS are at increased risk of cervical cancer,” the report said.

Dr. Thandeka Mazibuko, a South African oncologist, told the conference attendees that when an 18-year-old is diagnosed with cervical cancer, “this means sex is an important activity in her life and she indulged from a young age.”

Mazibuko said the standard treatment for cancer of the cervix is seven weeks of radiation therapy.

“After the treatment they cannot have sex with their husbands or partners. They cannot bear children because everything has been closed up. Some may still have the womb but radiation makes them infertile,” Mazibuko said, according to a report in The Namibian.

Statistics from the Cancer Association of Namibia show that cases of cervical cancer have risen from 129 in 2005 to 266 in 2012.

The SCCA Conference theme was, "Moving forward to end Cervical Cancer by 2030: Universal Access to Cervical Cancer Prevention."

In his keynote address, host and Namibian President Hifikepunye Lucas Pohamba urged African countries to help each other to expand and modernize health care delivery in the continent.

"Within the context of the post-2015 Development Agenda and sustainable development goals, the provision of adequate health care to African women and children must be re-emphasized," said the president, according to AllAfrica.

The Namibian leader urged mothers to breastfeed their children for at least six months as a measure to prevent breast cancer.


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Allow ‘lethal injection’ for poor to save on palliative care: Lithuanian health minister

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By Hilary White

Euthanasia is a solution for terminally ill poor people who cannot afford palliative care and who do not want to “see their families agonize” over their suffering, Lithuania’s health minister said last week.

In an interview on national television, Minister Rimantė Šalaševičiūtė added that the Belgian law on child euthanasia ought to be “taken into account” as well. 

Šalaševičiūtė told TV3 News that Lithuania, a country whose population is 77 percent Catholic, is not a welfare state and cannot guarantee quality palliative care for all those in need of it. The solution, therefore, would be “lethal injection.”

“It is time to think through euthanasia in these patients and allow them to make a decision: to live or die,” she said.

Direct euthanasia remains illegal in the Balkan state, but activists tried to bring it to the table in 2012. A motion to drop the planned bill was passed in the Parliament in March that year in a vote of 75 to 14. Since then the country has undergone a change in government in which the far-left Social Democrats have formed the largest voting bloc.

Šalaševičiūtė is a member of Parliament for the Social Democrats, the party originally established in the late 19th century – re-formed in the late 1980s – from Marxist principles and now affiliated with the international Party of European Socialists and Socialist International.

Fr. Andrius Narbekovas, a prominent priest, lecturer, physician, bioethicist, and member of the government’s bioethics committee, called the suggestion “satanic,” according to Delfi.lt. He issued a statement saying it is the purpose of the Ministry of Health to “protect the health and life, instead of looking for ways to take away life.”

“We understand that people who are sick are in need of funds. But a society that declares itself democratic, should very clearly understand that we have to take care of the sick, not kill them,” he said.


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Islamists in Mosul mark Christian homes with an Arabic "N" for Nazarene.
Gualberto Garcia Jones, J.D.

We must open wide our doors to Iraq’s Christians

Gualberto Garcia Jones, J.D.
By Gualberto Garcia Jones J.D.

On July 18, the largest Christian community in Iraq, the Chaldean Catholics of Mosul, were given a grotesque ultimatum: leave your ancestral home, convert to Islam, or die.

All but forgotten by the 1.2 billion Catholics of the world, these last Christians who still speak Jesus’ native tongue of Aramaic and live in the land of Abraham and Jonah are being wiped out before our very eyes.

As a way of issuing a thinly-veiled threat, reminiscent of the Nazi persecution of the Jews, the Arabic letter “N” (for Nazarean) has been painted on the outside of the homes of all known Christians in Mosul.

These threats, issued by the fanatical Islamic State of Iraq and Syria (ISIS) known for its bloodthirsty rampage of executions, have been taken very seriously by the several hundred thousand Christians in Mosul who have left with little more than the clothes they were wearing. 

At least most of these Christians were able to flee and find temporary protection among the Kurds in their semi-autonomous region.  However the Kurds do not have the resources to defend or shelter the Chaldean Christians for much longer.

On Monday, during an interview on Fox News, Republican U.S. Rep. Frank Wolf, who recently joined with 54 other members of the House of Representatives in a letter to President Obama asking him to act to protect these communities, stated that while Iraqi President Maliki had sent military flights to Mosul to evacuate Shiite Muslims, the US has done nothing to protect the Chaldean Christians.  Rep. Wolf also stated emphatically that President Obama has done “almost nothing” about the genocide taking place.

The silence from the White House is deafening.  But the lack of leadership from the hierarchy of the Catholic Church in America has been shocking as well.

Nevertheless, the plight of these Iraqi Christians is beginning to be taken seriously.   This is due in large part to the heroic efforts of local Iraqi religious leaders like Chaldean Patriarch Sako, who has gone on a whirlwind tour of the world to alert us all of the plight of these Iraqi Christians.  In a statement demonstrating his character, he told the Christians of Iraq last week, “We are your shepherds, and with our full responsibility towards you we will stay with you to the end, will not leave you, whatever the sacrifices.”

Before the U.S.-led invasion of Iraq was launched there were approximately 1.5 to 2 million Christians living in Iraq.  Today, there are believed to be less than 200,000.  The numbers speak for themselves.

Now that the world is beginning to be aware of the genocide in Northern Iraq, many of us ask ourselves: what can we do?  As citizens and as Christians blessed to live in nations with relative peace and security, what can we do?

The answer is quite simple and unexpected.  Demand that our government and church pull its head out of the sand and follow France. Yes, France.  

Yesterday, in a heroic gesture of Christian solidarity that would make Joan of Arc proud, the government of France opened wide its doors to the persecuted Iraqi Christians.  

”France is outraged by these abuses that it condemns with the utmost firmness," Laurent Fabius, France's foreign minister, and Bernard Cazeneuve, France's interior minister, said in a joint statement on Monday.

"The ultimatum given to these communities in Mosul by ISIS is the latest tragic example of the terrible threat that jihadist groups in Iraq, but also in Syria and elsewhere, pose to these populations that are historically an integral part of this region," they added. "We are ready, if they wish, to facilitate their asylum on our soil.  We are in constant contact with local and national authorities to ensure everything is done to protect them.”

The French statement drives home three crucial elements that every government, especially the United States, should communicate immediately:

  1. Recognize the genocide and name the perpetrators and victims.

  2. Officially condemn what is happening in the strongest terms.

  3. Offer a solution that includes cooperation with local authorities but which leads by making solid commitments such as offering asylum or other forms of protection.

With regard to the Church, we should look to the Chaldean Patriarch and the Iraqi bishops who shared their expectations explicitly in an open letter to “all people of conscience in Iraq and around the world” to take “practical actions to assure our people, not merely expressions of condemnation.”  Noticeably, the last section of the letter from the Iraqi bishops, before a final prayer to God, is an expression of thanks to the Kurdish government, which has welcomed them not just with “expressions” of goodwill but, like France, with a sacrificial hospitality.

On Friday, July 25, the United States Conference of Catholic Bishops did issue a statement, but unfortunately it lacked much in terms of leadership or solutions.  We should encourage our bishops to do better than that, be bolder and stronger for our persecuted brothers and sisters, name names and offer concrete sacrificial aid. In a word, be more like the French.

In 1553, Rome welcomed the Chaldean church into the fold of the Catholic Church.  Nearly 500 years later, Catholic Americans must find ways to welcome these persecuted people into our country, into our churches, and into our own homes if need be.

I say, I am with you St. Joan of Arc.   I am with you, France.  I am with you, Chaldeans!

Gualberto Garcia Jones is the Executive Director of the International Human Rights Group, a non-profit organization based in Washington, DC, that seeks to advance the fundamental rights to life, the natural family, and religious liberty through international law and international relations. 


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