Earlier this week local media covered the story of Amelia Rivera, a young girl with Wolf-Hirschhorn syndrome reportedly denied a kidney transplant by a local hospital. Amelia’s syndrome results in serious developmental delays, and according to her parents, the hospital declined a transplant due to her diminished mental ability and shortened lifespan.
It’s unwise to assume that news media get all the details of a story like this right, or that the motives of an entire hospital’s leadership and staff are as unfeeling as an individual doctor might seem. Nonetheless, a couple of things are worth noting. First, Amelia’s parents are persons who love their daughter zealously for who she is, and who know the beauty and dignity of her life despite her disability. Second, the habit of treating genetically disabled children as somehow less worthy of life is growing across the country.
A number of my friends have children with disabilities. Their problems range from cerebral palsy to Turner’s syndrome to Trisomy 18, which is extremely serious. Prenatal testing can now detect a high percentage of pregnancies with a risk of genetic problems.
The tests often aren’t conclusive. But they’re pretty good. And the results of those tests are brutally practical. Studies show that more than 80 percent of unborn babies diagnosed with Down syndrome, for example, now get terminated in the womb. They’re killed because of a flaw in one of their chromosomes – a flaw that’s neither fatal nor contagious, but merely undesirable.
The older a woman gets, the higher her risk of bearing a child with special needs. And so, in medical offices around the country, pregnant women now hear from doctors or genetic counselors that their baby has “an increased likelihood” of a genetic flaw based on one or more prenatal tests. Some doctors deliver this information with sensitivity and great support for the woman. But, as my friends know from experience, too many others seem more concerned about avoiding lawsuits, or managing costs, or even, in a few ugly cases, cleaning up the gene pool.
In practice, medical professionals can now steer an expectant mother toward abortion simply by hinting at a list of the child’s possible defects. And the most debased thing about that kind of pressure is that doctors know better than anyone else how vulnerable a woman can be in hearing potentially tragic news about her unborn baby.
I’m not suggesting that doctors should hold back vital knowledge from parents. Nor should they paint an implausibly upbeat picture of life with a child who has a disability. Facts and resources are crucial in helping adult persons prepare themselves for difficult challenges. But doctors, genetic counselors and medical school professors should have on staff – or at least on speed dial – experts of a different sort.
Parents of children with special needs, special education teachers and therapists, and pediatricians who have treated children with disabilities often have a hugely life-affirming perspective.
Unlike prenatal caregivers, these professionals have direct knowledge of persons with special needs. They know their potential. They’ve seen their accomplishments. They can testify to the benefits – often miraculous – of parental love and faith.
Expectant parents deserve to know that a child with special needs can love, laugh, learn, work, feel hope and excitement, make friends and create joy for others. These things are beautiful precisely because they transcend what we expect. They witness to the truth that every child with special needs has a value that matters eternally.
Raising a child with special needs can be demanding. It always involves some degree of suffering. Parents grow up very fast. None of my friends who has a daughter or son with a serious disability is melodramatic, or self-conscious, or even especially pious about it. They speak about their special child with an unsentimental realism.
It’s a realism flowing out of love – real love, the kind that forces its way through fear and suffering to a decision, finally, to surround the child with their heart and trust in the goodness of God. And that decision to trust, of course, demands not just real love, but also real courage.
The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. None of us is perfect. No child is perfect. The real choice in accepting or rejecting a child with special needs is between love and unlove; between courage and cowardice; between trust and fear.
That’s the choice we face when it happens in our personal experience. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not.
This Sunday, January 22, marks the 39th anniversary of Roe v. Wade, the Supreme Court decision that legitimized permissive abortion around the country. More than 45 million abortions later, the damage of that decision continues to grow — undermining our reverence for the life not just of unborn children but of the mentally and physically disabled as well.
We need to understand that if some lives are regarded as unworthy, respect for all life is at risk. We should pray that Amelia Rivera gets the help she needs, and that God surrounds her parents with the support they need.
And especially this week, more than ever, we should recommit ourselves to defending the dignity of all human life, no matter how “flawed” it may seem in the eyes of the world.
(Readers may wish to review the following hyperlinks related to the archbishop’s column this week: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/ and http://www.philly.com/philly/health/20120118_Support_pours_in_for_Camden_County_girl__3__denied_kidney_transplant.html)
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In 2004 a year before the Terry Schiavo murder, my disabled brother, Billy, lost a tooth and swallowed it which caused damage to his swallow mechanism. He could not swallow. The doctor at the hospital asked my parents if they wanted to have a feeding tube inserted into his stomach so that he could receive hydration and nutrition. If they answered “no” my brother, Billy, would starve and dehydrate to death. If they answered “ yes”, he would be given nutrition and hydration. The Doctor advised that there were no guarantees that the swallow mechanism would heal and warned that my brother might need a feeding tube for the rest of his life. The Doctor then asked a question that I will never forget “What is Billy’s life worth anyway? He is disabled. Hasn’t he suffered long enough?” It had a chilling effect! It woke me up! It reminded me of the Nazi Concentration Camps and the Nazi intent to kill the weak, infirmed and all not perfect to Nazi standards! But this is America! Life, liberty and the pursuit of happiness! Needless to say the doctor was fired. Billy received the feeding tube and in a month’s time was living a mobile life and teaching us all how to love.
A year later when the Terry Schiavo case surfaced I began to greatly agonize for the family! I could not believe that our nation would allow the murder of a disabled woman in the face of a loving family who wanted to care for her! I knew then, as I knew after 9/11 and after so many other events within and without our Nation and Church, that the Enemy had gained much ground and in very little time! Why? Because we are asleep in the lap of luxury and not in the lap of Our Creator!
It is time for me and you to wake up! The alarm is ringing!! We need to act and as our Blessed John II warned, it is urgent! First and foremost prayer and fasting because it is not our battle, it is the Lord’s. We need to empty ourselves so that His power can take back our Nation I am very grateful for courageous Shepherds like Archbishop Chaput, who display prophetic courage and show us the way even when it is unpopular. All of us need to contribute loudly to the voice of Truth so that the enemy walls of death will come tumbling down! Just like the enemy walls of Jericho, the Nazi’s and the communists. It will happen sooner or later. “In the end, the way of love and truth always wins.”
Your Excellency as always thank you! Your authentic witness is invaluable!
I’m sorry but 5000 people die waiting for kidney transplants every year, we do not have the luxury of handing them out unbiasedly. We are all lying to ourselves if we say that a child with a questionable life span and quality of life is equivently deserving of a kidney that could be used to give a healthy baby a chance at a long fulfilling life. We need to put our hearts aside and use our brains here.
Thank you, Archbishop, for your sensitive address.
What support do the people of the church actually give to parents with disabled children?? The problem of abortion of disabled children is the family is often left without any support (psychological & financial and the finances play an important part as it’s very expensive to support a child with a disability.Besides it’s the future of the child after the parent’s old age and death that hurts most:from birth to death.What about moral support from the priest and other religious? Very often they don’t even have the time to just stop and greet them if not ignore them completely!!!How often I accompany my niece to the parish church for services and no priest,deacon etc. bother to stop and say hello to her. We’re practising christians (catholics) you see; it hurts I tell you.It’s easy to preach and point fingers!I’m proud of my niece: she’s an angel of God already now on earth:pure of heart, knows no evil,envy,hate.BUT WHERE ARE THE “PEOPLE OF GOD ON EARTH WHO DEFEND GOD’S DISABLED CHILDREN”?
My one comment is that the Catholic Church, which has many fine educational programs, private parochial school should also have special education programs in all these schools with staff highly qualified to teach children with disabilities. Why do Catholics support all life, yet in their own schools are not willing to establish the necessary school programs?
Our son has Congenital Rubella Syndrome – deaf/blind from birth and developmentally disabled. He lives with us and always has. Archbishop Chaput was a tower of support and comfort for us in dealing with the State during an incredibly difficult time three years ago. He knows whereof he is writing and he not only talks the talk, he walks the walk. Beautifully written piece.
Rachel, I’m the mother of a son with Down syndrome, and grandmother to two children with other disabilities. I appreciate your point, but can we please give the Archbishop a break? Why would anyone write anything positive or beautiful if he/she gets criticized right out of the box?
Susan, negativity is a sign of the times, some comments are hate filled. Look how unfeeling some lawmakers in Washingto are seeking to limit health care for the old, or poor. We all know the party in question. I am sure the writer did not mean to discount all the good Archbishop Chaput had in his article. And now, with instant communication people often cannot include all ideas in their writing.
I know Archbishop Chaput personally and he is very compassionate, and devoted to all who need help.
Perhaps this discussion of Amelia should also include a reminder of the need for more organ donation? There would be no need to exclude her from transplant if the supply were sufficient for the need.
Pope John Paul II sums up the position of the Church in these words:
[T]he Gospel of life is to be celebrated above all in daily living, which should be filled with self-giving love for others. . . . Over and above such outstanding moments, there is an everyday heroism, made up of gestures of sharing, big or small, which build up an authentic culture of life. A particularly praiseworthy example of such gestures is the donation of organs, performed in an ethically acceptable manner, with a view to offering a chance of health and even of life itself to the sick who sometimes have no other hope (Evangelium Vitae, no. 86, original emphasis).
Just a correction – she is NOT being denied a transfer from the transfer list. She is being denied any transfer, from anyone, including donation from her parents or relatives. That will not do an organ donation transfer, period. And she is being denied upon the grounds that because she is disabled, she has no “quality of life” to look forward to. That’s unconscionable.
Thank you what a beautiful posting.
My disabled daughter touched many people with her life. Everyone has value and should be respected for being a creature of God. If someone needs to believe that everyone has to have a purpose then maybe the disabled in our world have the purpose of given those her not disabled a chance to do unto the list our of brethren.
Elizabeth please pray for me.
I am a disabled woman in total agreement with the Archbishop’s feelings, and I appreciate that he has lifted up his voice in support of Amelia and all disabled people. I was saddened, then, to notice that in the list of people who might provide counseling related to disability he mentions only “Parents of children with special needs, special education teachers and therapists, and pediatricians who have treated children with disabilities.” He has entirely left out the people who know best what life is like with a disability, and who could be a living example of the value of life with a disability: disabled people. It’s quite ironic that in an article overflowing with love for our humanity, he has left us out of the list of people who could most help to spread the message of respect for all life.