The Reason My Son Is Alive

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 disabilities. 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 previously led to the death of many children with Trisomy 13 and 18. 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 judgment 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…[for us] 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 miracles of the lives of Lane and Bella.

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “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

By

Alex Hauber is the Executive Director of Hope for Trisomy, 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. Alex is also the Father of Lane. Lane has Full Trisomy 18 (Edwards Syndrome). He began to Advocate and help Families with Trisomy Children in 2009 after his Sons Birth. In 2010 he officially became the Executive Director and Chairman of the Board for Hope for Trisomy. Hope for Trisomy is a 501(C)3 Non Profit Organization based in Naples Florida formed in May of 2006. For more Information please go to www.hopefortrisomy.org

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  • http://www.facebook.com/Alex.hauber.full.trisomy.18.dad Alex Hauber

    Thank you for Posting Lane’s Story!!

  • Sarah Beth Couvillon

    These children are so very beautiful.

  • http://www.facebook.com/misty.garner.39 Misty Garner

    I am the the truly blessed and proud mother of an amazing 6 year old son with Trisomy 9p thank you for sharing your story and all you do raise awareness. Your words at so true, beautiful and inspiring! You are amazing and appreciated by so many of is! God bless!

  • Peter Nyikos

    There is a very moving film about the life of a baby with Trisomy 18, who lived 99 days:
    http://vimeo.com/1992220

  • chaco

    “Take each day as it comes, enjoy the little things, live…. love…laugh to the fullest.” You got it Bro’ ! ” I leave you my peace… Not as the world gives…” (Jn 14: 27). You know that you can live more in a short time than “the lost sheep” can live in a lifetime of chasing wealth, popularity & sensual pleasure as their main meaning of life. You know “The Kingdom is within” (Jn 17: 21) and that even though we’re in “Church Militant” awaiting “Church Triumphant”, It’s All Good ! – because “….I have have overcome the World.” (Jn. 16: 33). Thanks a Million for your shining witness.

  • A T18 mommy

    I chose life…God had other plans.

    So much buzz around the T18 community these days. Now that Rick Santorum is in the political spotlight. Because of his beautiful daughter Bella, and his love for her, so many are now hearing about Trisomy 18 and I, for one, couldn’t be happier. I’m
    glad that there are people who are willing to stand up and advocate for so many
    children that don’t have their own voice. When we first learned, at only 11 weeks into our pregnacy, that our sweet son had Trisomy 18, we were given no hope. The only thing doctors wanted to do was to have us terminate, to make the “problem” go away. The only thing I wanted, was to have my son live, and that is exactly what we set out to make happen. I read all I could about T18. I joined groups on line, participated in on
    line discussions, voiced my desires clearly at every doctors appointment, wrote
    it in large print on my birth plan. I wanted my son to be born alive, and I wanted him to live. But that didn’t happen. He was born still, but he was still born.

    Now don’t get me wrong. Every time I hear about a Trisomy 18 child that is born alive, or I read about a Trisomy 18 child that continues to beat all the odds and continues to
    grow and thrive at various ages, I am so happy for that family. I praise God right along with them, and cheer them on as I watch all of their wonderful milestones. I am so happy for them, yet I am sad for me. That was what I wanted, that is what
    I prayed for. So when I read about people who are so very fortunate to have their T18 children with them, make statements that their child is alive, because they chose life, it hurts, deeply. Your child is alive, and I’m happy for you, I really am, but your child is alive, not because you chose life, he or she is alive because of the grace of God.

  • Annamarie

    My condolences to “A T18 Mommy,” and congratulations to Alex Hauber, Lane, and the entire Hauber family. I had never heard of this condition before now, but I know what it is like to have all the experts telling you to give up on an unborn child. That happened to me 34 years ago, and he is now 6’2,” has several post graduate degrees and is still looking for chances to prove to his mother she is wrong…about whatever. Actually, he is kind, sweet, and handsome, and best of all, he is living proof that parents should listen to the whispers in their hearts telling them what is true. That is the Holy Spirit putting in His two cents, and I, for one, wouldn’t argue with Him.

  • Alex Hauber

    T18 Mommy. I understand where you are coming from. You must be talking about the following “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.” NAd yes i must agree it is the Grace of God. Yet we did choose Life for him. If it was up to the Doctors Lane would not be alive anymore. HE had a full blown Cardiac Arrest Doctors did not want to give him a chance yet we fought for it. 5 Days Later we left the Hospital. He had multiple RSV’s where he needed imense amounts of Qxygen. Doctors Orders where minimal intervention yet we fought for better Treatment. So in a sense he is alive because we choose too!! But yes it was by the Grace of God that lane is STILL with us and will be turning 5 Years old in December

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