Perfect babies

I have just read this brilliant post on Ignitum Today on "perfect children." If you haven't already seen it you really must. I've posted the link below:

http://www.ignitumtoday.com/2012/07/18/92-and-perfect-babies/?utm_source=dlvr.it&utm_medium=twitter

That statistic that 92% (which I'm assuming is just for the USA although I doubt it'll be little different for the UK) of babies diagnosed with Down's Syndrome are aborted is not only shocking but horrifying. Like the post's author I find it staggering that people can honestly believe that no life is better than a difficult one. Her story will, for many, raise questions as, obviously, in her case the conclusions drawn from the tests that were done were found to be inaccurate and for how many more children was this true? But regardless of whether the vast majority of children who were diagnosed with Down's syndrome did or did not have it it doesn't change the horror of the situation. So, so many children have been killed because people can't face the thought of bringing a child with a disability to term, there is a deep fear that the life that child will live will simply be unlivable, that they will be unlovable, that the lives of the parents will become too hard, that they won't have enough support and that it is cruel to bring a child with that kind of disability into the world. But, when faced with these sorts of fears and statements, I would always ask; "aren't we the ones with the disability?" After all it is we who are imposing the view that all life that is not 'normal', not 'average', not 'the same' as yours and mine is not worthy of existence. Is it not us who are so blind that we cannot even consider that someone with a different quality of life, with different abilities can still live a worthwhile life by simply living. And instead of pulling them and their families down with everything they can't do should we not try to maximise and emphasise what they can and pour our efforts into making that possible? Instead of spending billions on abortion spend billions on improving their quality of life and help them to live as full a life as we are able?

All of us, every, single one, is created in the image and likeness of God. Our innate dignity as human beings is founded in this. And that dignity, that expression of the image and likeness of God shines though the poor and sick and disabled and elderly just as much as through fit and healthy and young and wealthy. We need to see beyond the end of our own existence and truly appreciate the life of others. Yes, it may be different, but it is the beautiful, wonderful, awesome mystery of life just the same.

Two things worth adding YOUR voice to

John Smeaton draws our attention to two ways we can stand up and be counted, hopefully with profitable effect in terms of saving lives.

Stop Eugenics Now

This is a new European initiative which has launched an online petition open to individuals, families and disabled rights organisations to sign.  It calls upon the European Court of Human Rights to “reaffirm the principle of the prohibition of eugenics, and the obligation of the Member States to protect the life of every person, including of the disabled before their birth.”

The background against which the petition is being brought is that of the case of Anita Kruzmane v. Latvia. Anita's doctor suggested, at 18 weeks pregnant, that she have an appointment with a specialist to include an alpha-feto protein (AFP) test which is used to detect foetal abnormalities.  Anita, who claims that she was not in fact referred for this test, went on to give birth to a baby with Down's Syndrome.  She has taken her case to the Court of European Human Rights under Article 8 of the European Convention on Human Rights, claiming that the negligence of a doctor has meant she was denied adequate and timely medical care (the AFP test) resulting in her being unaware that her foetus was at risk of having a genetic defect - and that she therefore was denied the opportunity to choose whether or not to continue with her pregnancy.

John Smeaton points out that this case follows several other high-profile ones about abortion, including "several cases from France and the Netherlands concerning so-called 'wrongful births' of children with conditions such as Down’s syndrome".

What is the central issue at stake here?  The European Centre for Law and Justice (ECLJ) has said, “This case may provide an opportunity for the Court to clarify its case-law with regard to eugenics and abortion. This is necessary due to some visible confusion in the existing case-law, and this is made possible considering the large number of important cases currently before the Court on this issue.”

Mr Smeaton reports Gregor Puppinck of the ECLJ as seeing the key question arising from this case to be:

"Does the [European Convention on Human Rights] guarantee a right to eugenics for parents, and in particular to the procedure of prenatal screening-elimination of sick or disabled fetuses? If so, does the State have a positive obligation in this regard?"

That is, as Stop Eugenics now puts it,  Should the elimination of one’s unborn baby because it has Down syndrome be regarded as a human fundamental right? 

Many readers will be aware that in the UK, out of those babies diagnosed before birth as having Down's Syndrome, 92% will be aborted.  It is legal in our country to abort a baby right up until birth if it is found to have a disability or handicap.  Certainly, as a child growing up in the 1960's and 70's, I knew or met several Down's Syndrome people.  One lived in the same block of flats as us.  These days you rarely see any... because they haven't been born.

Certainly some of those I knew had varying degrees of health problems, but what I clearly remember is that they invariably had huge smiles on their faces!  Possibly this is a trick of memory of the it-was-always-sunny-in-summer-when-I-was-a-child type, but Down's Syndrome children are certainly more than capable of deriving a lot of pleasure from life and giving a lot of pleasure to those around them.  Why, then, are we killing them?

With regard to "wrongful birth" cases I admit I find it hard to get my head around the fact that a mother can look at her child and say she feels that child shouldn't have been born.  I am not judging such parents... or at least I am trying my best not to judge, because I know I am not standing in their shoes or feeling the pressure and demands they must cope with.  Presumably they are acting out of compassion for their child, who they must feel will not have a good quality of life.  I only know that it gives me the chills to think there are now prenatal tests for my daughter's condition and that a parent could choose to abort a child like her.  In fact I try not to think about it, because the idea that Aila might never have existed is too awful.  At the same time I know I have to do what I can to avoid other Ailas being denied their right to life.

That's why I signed Stop Eugenics Now's petition and encourage you to do so too.  What else is systematic testing for disability in an unborn child followed by the automatic right to abortion, other than eugenics?  There were many people in the last century who mounted passionate arguments in favour of eugenics and there are people doing the same now.  The fact remains that it is an unacceptable use of medical technology and an inhuman form of discrimination against those we deem not fit to live - however we couch our arguments in terms of a misguided compassion and concern for "quality of life" (a flexible term if ever there was one, defined differently by different people).

I've said it before and I'll say it again!  True compassion tries its utmost to offer people reasons to live, not ways to die (or to be killed).

One Million Rosaries for Unborn Babies

Hat tip again to John Smeaton for drawing attention to a campaign being run by the Saint Michael the Archangel Organization.  They are collecting pledges to pray a rosary (or two!) for unborn children over 4-6 May, to bring an end to "the surgical and non-surgical killing of unborn human persons".  They didn't quite make their target last year but say that people from over 30 nations participated.  Why not go over to the website here and make your pledge?  Imagine the prayer power of hundreds of thousands of Rosaries being offered up around the globe for the same intention over those three days... what couldn't the Holy Spirit do with that?

But thanks be to God! He gives us the victory through our Lord Jesus Christ. Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labour in the Lord is not in vain. (1 Corinthians 15:57,58)

A pro-life perspective on letting go

Last night I watched Letting Go on BBC1, a documentary by disability campaigner Rosa Monckton telling the stories of several young people with learning difficulties as they make their first steps towards independent living.  If you didn't see it, it's well worth catching on iPlayer.

Rosa's 16 year old daughter Domenica has Down's Syndrome, as did some of the other young people featured.  As far as Domenica is concerned the sky's the limit when it comes to planning for her future - she loves dancing and at the end of the programme was thrilled to secure a place at a stage school which teaches special needs students together with their mainstream peers - but Rosa is only too painfully aware of the harsh realities her daughter is going to come up against as she tries to find her niche in the world.

This theme was repeated amongst the other young people and parents that Rosa talked to.  Like all parents, those we met in this programme wanted to encourage their children to live their dreams and achieve their full potential; like all parents, they knew that the normal course of things required them to let their chicks fly the nest and live their own lives, for their own good.  Unlike the majority of  parents, however, they were painfully aware that theirs wasn't quite the normal course of things and that there would be special challenges to address. One of the young people, a young man with Down's Syndrome, had already come up against some of those challenges. His attempt to live an independent life in his own flat had gone very wrong, despite a lot of support from his parents and carers, because his neighbours insisted on being so cruel to him that they made his life in the flat miserable and ultimately untenable.

As the mother of a disabled teenager, so many of the concerns of Rosa and the other parents struck me to the heart.  The dilemma of encouraging your child to have high goals and hopes for the future yet be realistic about the very real physical limitations that have to be addressed; the fear that others will not understand them, will mock them for being "different" and leave them lonely... and above all, always there, a spectral shadow subtly darkening even the sunniest day, the fear of how they will manage when you are no longer around - as one day you won't be.  The ghost of that fear is a terrible one, always with you, sometimes in the background and sometimes right there in your face gripping you by the throat.

All but one of the young people featured were still living in the parental home.  The one that did have her own home - a 28 year old - was still very dependent on her parents who came round daily to give her care, because as she lacked a formal diagnosis (although she very obviously suffered from a syndrome of learning and physical disabilities) she was not eligible for state funded care of the sort she needed.

It seems that so many people who are carers for relations with mental or physical disabilities end up struggling at some point to get necessary assistance or facilities for them.  It is an extra worry and burden that no-one needs when they are already expending (however willingly and lovingly) a demanding amount of emotional and physical energy on supporting their child.  A particularly demanding aspect of that support lies in encouraging your child to be happy and positive and see their future as worth looking forward to.  The parents of these young people were happy to sacrifice themselves to give their children all the backup they needed, but at the same time were worried sick about the future care and wellbeing of those children once they were no longer in a position to help, and the combined strain showed.

Isn't this - the provision of care and support for the most vulnerable in our society - where we should be concentrating our resources?  These parents were role models of how to convince a disabled person of their worth, but the sad fact is that the wider world out there isn't necessarily like that.  Aborting babies with Down's Syndrome (an absolute travesty: like most Down's sufferers, the youngsters featured in this programme were happy and adorable) and promoting euthanasia as the answer to life's difficulties are neither good uses of time and money, or the right ways to encourage the inclusivity and equality that we like to pride ourselves on these days.  In fact inclusivity and equality are going to become progressively emptier terms the more we deny life to those who aren't "normal" or "perfect", because our actions simply encourage the attitudes which the young man tormented by his neighbours came across.  If we really celebrate diversity, if we really believe that no-one should be shunned or teased for being "different", then let's embrace all life and every person and concentrate on giving them reasons to live, not die.

I'm afraid I can't remember the exact words she used, but at the end of the programme Rosa commented that if a society is judged by the way it treats its most vulnerable members then our society is sorely lacking.  We need to take a long, hard and deep look at why that is - starting from the very beginning.

The 12 -week Scan and Down's Syndrome

Group member Amanda, a medical professional, writes:

 

So you’re pregnant, congratulations! One of the first tests you’ll be offered is the 12 week scan (also known as the Nuchal Fold Scan). It’s lovely to see your baby for the first time. Amazing. And certainly, if you aren’t sure of your dates, this is a good time to confirm your expected delivery date (EDD). Women who have a history of miscarriage may also find this scan reassuring, but beware! One of the main purposes of the 12 week scan is to detect babies who are at “high risk” of chromosomal abnormalities. Then parents can have the choice to proceed with a more risky test, to examine baby’s chromosomes accurately, so that little ones with less than the perfect complement can be identified and aborted. Our modern secular culture has become intolerant of anything less than perfection. But what does the Catholic Church say about this?

• “Human life must be respected and protected absolutely from the moment of conception.From the first moment of his existence, a human being must be recognized as having the rights of a person — among which is the inviolable right of every innocent being to life.” (Catechism of the Catholic Church, n 2270).

• “Since the first century the Church has affirmed the moral evil of every procured abortion. This teaching has not changed and remains unchangeable. Direct abortion, that is to say, abortion willed either as an end or a means, is gravely contrary to the moral law….” (CCC, n 2271).

It is very clear that every human life is a gift from God and is to be cherished and protected. 

 

One of the commonest chromosome problems that might be picked up antenatally is Down’s syndrome or Trisomy 21 (literally three copies of chromosome number 21, instead of two). As someone who grew up with a Down’s syndrome sister I am horrified that, in this generation, she might not ever have been born because her parents may have decided she was not worthy of life. It’s estimated today that nine out of ten Downs babies are aborted after antenatal testing. 

 

As a mother and a doctor, I am acutely aware that any one of my six lovely children could become disabled by illness or injury at any time. Whether they were still deserving of my wholehearted love, care and protection would be unquestionable. The antenatal campaign against Down’s Syndrome and the other less common trisomies, 18 (Edwards Syndrome) and 12 (Patau’s Syndrome), has been called genocide and likened to the slaughter of the Jews in World War II. 

American Presidential hopeful, Rick Santorum, has a three and a half year old daughter, Bella, with Edward’s Syndrome. He speaks very movingly of how she is the centre of their family, a centre of light and love.  "Bella makes us better," he says.  "We're the disabled ones, not her.  She has a beautiful spirit that emits unconditional love."

 

So, my advice, for what it’s worth.... Think twice about why you are being offered a 12 week scan. Take one, if you want. But do it for the right reasons. And let’s all thank God for the gift of life, intrinsically precious, in all its forms.