Courageous mum offered apology from hospital

The courageous mum, Toni, who refused an abortion after medical “experts” told her that her unborn baby would not survive, has been given an apology by Waikato Hospital.

Representatives from Waikato Hospital, who initially saw Toni, visited her at home and apologised that the service she received was “not up to scratch”.  They are still working through the families concerns.

Toni had been diagnosed with preterm premature rupture of membranes (PPROM) during her pregnancy with daughter Ava.  Doctors at Waikato Hospital told Toni after scans that her baby would not survive and had no facial bones and organs were missing.  She was advised to “terminate”.

Toni and her family did not give up hope.

From 26 weeks, Toni was seen at Auckland Hospital which specialises in high-risk pregnancies.  At 30 weeks she was advised again to abort her baby.  Toni, once again refused.  She delivered her daughter, Ava, two weeks later.

Toni and her daughter Ava.
Toni and her daughter Ava.

Ava was born with none of the conditions diagnosed in-utero.  However she did have a relatively common “horseshoe kidney” which had been missed.

The NZ Herald reports that an estimated 1800 babies are delivered after PPROM diagnoses every year in New Zealand. Of those, most are healthy.  It is thought that around 25 neonatal deaths are related to PPROM.

Toni has yet to receive an apology from Auckland Hospital.  One that is surely warranted after Toni was told “This is not a Woman’s Weekly article, this is not going to be a miracle pregnancy, this baby is not going to survive.”

Ava’s grandmother, Janinie, wants doctors to give good advice in these situations, advice that includes other options other than termination.

Ava is one year old now, and doing well, all thanks to her Mum and family, who, in the face of adversity, did not give up hope.

“Compassion can be a bridge either to despair or to hope.  As a mere feeling that seeks to remove the sufferer since it finds suffering unacceptable, compassion leads to despair.  As a virtue rooted in love, compassion leads to another virtue rooted in love – hope.”
~ Donald DeMarco

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Fighting to save the right to life of pre-born children who have Down syndrome

Two children one with Down syndrome  The fight to save the right to life of pre-born babies who have Down syndrome has been fought valiantly by Mike Sullivan of Saving Downs.  He works tirelessly to educate people of the eugenic nature of New Zealand’s pre-natal screening programme, explaining the reality that abortion is offered to, and accepted by many parents when there is a diagnosis of disability. This kind of screening, which has a “search and destroy” mentality,  leads to a change in society’s perception as to what type of babies it is acceptable to give birth to.  Pre-natal screening should always value the inherent value and dignity of the pre-born child.  It should always have the outcome of caring for both patients – mother and baby, ensuring a safe pregnancy, and offering treatment wherever needed in order to bring the pre-born child to birth.  Pre-natal screening should not lead to the death of the pre-born child.

Recently, a paper by Robert Cole and Gareth Jones was published in the New Zealand Medical Journal entitled, “Testing times, do new prenatal tests signal the end of Down syndrome?”  In the paper the authors write:

 “First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

Cole and Jones make it quite clear that the value and dignity of the person who has Down syndrome is less than that of those who do not have Down syndrome.  Throughout their paper they attempt to justify New Zealand’s pre-natal screening programme which serves to search and destroy.

Pre-born babies are legally allowed to be aborted (up to 20 weeks gestation) in New Zealand because of diagnosed disability in-utero. We know that abortions for disability happen long after the 20 week allowance in law.  Saving Downs (as do Family Life International NZ), want to see this clause in the Crimes Act (1961) to be removed “that there is a substantial risk that the child, if born, would be so physically or mentally abnormal as to be seriously handicapped”.  Family Life International NZ would love to see protections for all pre-born children be written into law.

Mike Sullivan was interviewed by Susan Wood on Q&A, Easter Sunday morning regarding this issue.  The Disability Commissioner, Paul Gibson was also interviewed.  The transcript is below (original text, including spelling errors kept).  Video for Mike Sullivan can be found here.  Video for Paul Gibson can be found here.

SAVING DOWNES’ SPOKESPERSON MIKE SULLIVAN AND OTAGO UNIVERSITY STUDENT ROBERT COLE INTERVIEWED BY SUSAN WOOD

MIKE Eugenics has always been concerned with the policy of reducing the prevalence and population of people deemed to be disadvantaged, so they’ve actually presented that argument in the paper.

SUSAN But I would perceive a disadvantage of a Down’s baby. One disadvantage I would perceive is that they may never live independently. Am I wrong?

MIKE Well, yes, I think you are. When we look at the history of Down’s syndrome in New Zealand and the shift away from institutionalisation to children being in our families and our communities, there’s been a revolution in their capabilities and achievements and-

SUSAN But you can’t be confident your 5-year-old will live independently at 50 or 40 or 30, can you? You don’t know that 100%.

MIKE Well, I don’t think any parent knows that about their child, so I think we need to challenge those underlying assumptions of seeing disability as something that’s a disadvantage when, in fact, it’s part of human diversity and dignity.

SUSAN The report, as it pains to point out, though, that people with Down’s report high satisfaction with their lives, they’ve got self-worth, they love their families and friends and that information should be passed on to medical professionals. That would seem to me the opposite of making the case for eugenics.

MIKE Well, absolutely, and that’s where there’s a disconnection in the paper, because on the one hand they’re acknowledging, you know, the inherent dignity of people with Down’s syndrome, but then they’ve presented-

SUSAN Aren’t they putting both sides, though? Aren’t they just putting- laying both sides out?

MIKE Well, I believe – you know, as an advocacy group for disabilities, I believe they’ve crossed a line, because the fundamental principle of human rights is that all members of the human family have dignity. And what they presented here is this argument that in the interests of the greater good, then these people, these beautiful children, who have Down’s syndrome may not be welcomed into our society. It runs counter to that principle.

SUSAN Your group wants screening to be only as advice, not for termination of Down’s. So who would choose that? You were saying you should choose if a woman should give birth to a Down’s baby?

MIKE Well, we’re saying that the application of those types of law should be without discrimination towards people with disabilities.

SUSAN But the disability’s in there, and it’s the woman’s choice. I mean, are you saying it should be your choice, it should be the government’s choice? Because surely the woman has a right to choose, a family.

MIKE Well, we’re saying that in terms of the Convention on the Rights of People with Disabilities article 10, The Right to Life, that people with disabilities do have a right to life.

SUSAN But our law allows abortion on disabilities, and it allows women and families to choose. Are you saying that’s wrong? Are you saying you should be choosing or the government should be choosing?

MIKE Well, if we look back at how that law was established back in 1977, the argument was put forward that it would be unethical to have abortion on the grounds of social convenience, but it would be moral to enable abortion of disabilities. And the reasons they used for that was that the-

SUSAN But you don’t want abortions for disabilities, or not Down’s, do you?

MIKE Well, we want a level playing field, so we want one law that applies to all. We don’t want a distinction in law which says that-

SUSAN So you don’t- Let’s be really clear. It’s a really simple question. You do not want Down’s babies to be aborted? You do not want that to be allowed, correct?

MIKE We don’t want a distinction in the law that says that Down’s syndrome in itself is a basis for a termination of pregnancy.

SUSAN It’s a disability, though, and it comes under that wide-ranging disability.

MIKE Well, no, because it’s a contravention of the United Nations Convention on the Rights of People with Disabilities. That article’s quite clear. It says that people with disabilities have a right to life, and that right to life-

SUSAN But a mother has a right to choose who she gives birth-

MIKE Well, if I can finish explaining that. So that article for right to life says that that has to be provided on an equal basis with all others. The situation we have in New Zealand is a law that makes a distinction. It provides a different level of protection solely on the basis of disability.

SUSAN So you want the law changed?

MIKE And that law is a discriminatory law.

SUSAN So you want that law changed?

MIKE Yes, we do.

SUSAN Very good. Joining us now, Rob Cole from Otago University, one of the authors of the report. Morning, Rob.

ROBERT Hi.

SUSAN Were you promoting eugenics in any way, shape or form with this paper?

ROB This is not a eugenics paper, Susan. What we’re talking about here is a screening programme – a screening programme which is currently occurring in New Zealand – and this is about a screening programme that promotes, like you said, a woman’s right to choose.

SUSAN But the woman’s right to choose – there are not numbers in this country, but on overseas evidence, 90% of women who find they are carrying a Down’s syndrome child will abort. So that will mean at some point fewer or maybe no Down’s babies.

ROB I don’t think that there will ever be no Down’s syndrome- children with Down’s syndrome. I don’t think that will ever happen. There will always be abnormalities which slip through a screening procedure, and there’s always going to be women who don’t want to have screening. Because screening is voluntary, you can opt in, you can opt out, and you can choose how far you go down the screening pathway.

SUSAN I’m wondering, actually, if we- you know, to Mike’s point about Down’s and in your own report you talk about the lives that a lot of Down’s people have, that they have self-worth, they have love and they, you know, have very good lives. Is it something we should be even trying to abort or breed out?

ROB Some people are affected more than others. This has impacts on the parent and on the child. We’re not saying those impacts are necessarily negative or positive, but it’s up for the women to make that choice.

SUSAN It’s tougher for the parents; more work needs to go in. It’s just a harder road for parents?

ROB Well, I’m not saying it’s tougher, but I’m saying that they may need to provide their child with more support. They may need to provide that support throughout life in some cases. I’m not saying that that’s necessarily a negative thing.

SUSAN Rob, do you think, you know, aborting Down’s babies, for example, leads us- and there’s more tests that we have, and I know you’re examining those tests less invasive for pregnant women – does it lead us down that slippery slope of designer babies? You know, let’s choose the eye colour, let’s choose if they’ve got long legs, let’s choose the baby we want?

ROB Prenatal testing has existing for Down’s syndrome and other disorders for over 40 years now, so this is not a new occurrence. That’s one thing. Also, we choose these tests – whether or not to use them – in light of many different things, and it’s not necessarily because we’ve chosen one test we will then choose a whole range more. I don’t think that’s the case.

SUSAN Thank you for your time, Rob. A quick last word to Mike. Well, Rob is very clearly not talking eugenics. Do you take him at his word?

MIKE Well, no, I disagree because, as I said before, eugenics is concerned with reducing the prevalence of people in a society based on a society’s perception of those people being disadvantaged. And Rob’s used that exact word – the perceived disadvantage of the value of people with Down’s syndrome in our society.

SUSAN Why so much do you want to save Down’s syndrome? Can you give me a succinct answer on that? Because to those of us without Down’s children, we wonder.

MIKE Because they’re a natural part of our human diversity, and that diversity is a thread that connects human beings as a community and a society, and it’s a part of what we are and we’re all connected, and we should learn as a society to embrace every child as they are, as a human being that holds dignity like everyone else.

Saving Downs reject University’s discriminatory paper on Down syndrome

All chilren have a right to lifeThanks to Mike Sullivan at SavingDowns for once again standing up and being a voice for people who have Down syndrome (both pre-born and born), and their families.

We reject Otago University’s discriminatory paper on Down syndrome

Saving Downs has called for the resignation of Otago University’s Director of Bioethics following the publishing last week of a highly offensive and discriminatory paper about prenatal testing for Down syndrome.

The paper that was published last week basically outlines the practice of  antenatal screening for Down syndrome in New Zealand and considers the possible implications of the introduction of ‘Non-Invasive Prenatal Diagnosis’ (NIPD), which enables diagnosis earlier in pregnancy with less risk of complications.

There are a number of academic inaccuracies in the paper. Let’s have a look at those factual errors and other problematical statements.

In the abstract Jones acknowledges that:

“Prenatal testing may result in fewer people with Down syndrome.”

He then attempts in the rest of the paper to dismiss any ethical concerns over such an outcome. Such a possibility is extremely problematic as it devalues the lives of people with Down syndrome by reducing their birth prevalence. It is in direct conflict with basic principles of human rights and dignity.

Professor Jones states:

“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

This statement is false, as can be attested by the actual lived experience of people with Down syndrome and their families. Children with Down syndrome live good lives and are loved and valued. The concept that they are a “disadvantage” and that we are “doing the most good” by not having them around is an extreme form of discrimination that reinforces negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice.

The first section of the paper provides an overview of screening in New Zealand and the 2010 “Quality Improvements”, a subject has been discussed at length on many of our blogs.

It is stated as a fact that:

“Chorionic villus sampling (CVS) is used earlier than 14 weeks of gestation, and amniocentesis is used after this time. Both procedures carry with them a spontaneous abortion risk of around 1%.”

This is incorrect. The risk of spontaneous abortion for CVS is 1 to 3% according to the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Accuracy is important is discussing such matters where lives are at stake.

This is immediately followed by a very problematic statement:

“With current screening most pregnancies subjected to CVS or amniocentesis do not actually have a DS fetus and as a result, fetuses are lost as a consequence of these diagnostic procedures. The primary advantage of NIPD is that there is no risk of spontaneous abortion, because diagnosis is based on only a blood sample.”

A careful consideration of this statement shows that there is an underlying false assumption that the loss of foetuses without Down syndrome is an ethical concern, whilst the loss of those with Down syndrome does not present a ethical concern. NIPD is seen as an advantage because it reduces harm to one group of human beings whilst continuing harm to those with Down syndrome. The position stated is that one group of human beings are off less worth (those with Down syndrome) than the others (those without Down syndrome). The ethical and non-discriminatory position is to ensure that there is no harm caused to either group during the screening and diagnostic pathway. Incidentally, it was this same flawed logic that was behind the 2010 “quality improvements”.

Jones then moves on to observe that the introduction of NIPD is likely to have a negative impact on birth numbers for Down syndrome:

“Increased uptake of tests will result in increased detection of DS, and probably more terminations. The number of DS births may, as a result, drop. However, it is unlikely that DS will disappear.”

“But as more pregnancies are tested, will DS become a ‘rare’ disorder? In time, perhaps.”

But then he says:

“DS screening does not serve to systematically erase the congenitally disabled from the population; it provides information for patients about their pregnancy.”

So he has in just a few paragraphs before recognised that the number of births is likely to drop, but then says that screening “does not serve to systematically erase the congenitally disabled from the population”. If you proceed with act (screening with NIPT), knowing the likely outcomes (less births), then you are ethically bound to the consequences of your actions. This is a basic principle of law and ethics.

Read the rest of this post at Saving Downs.

ACC Claim Mother Sparks Interesting Discussion about Pre-natal Screening

baby holding handAn interesting discussion was sparked on talkback this morning as it was revealed the mother of a 5-year-old girl with Spina Bifida is attempting to claim from ACC.  The reason?  The mother had had an anatomy scan at 20 weeks and the pointers that suggested Spina Bifida were passed over by the radiographer.  Had she known her daughter had Spina Bifida, she would have aborted her.

It raised an interesting discussion, because it seemed, many of the callers believed that it would be perfectly fine to choose to abort the baby if he or she was found to have an anomaly (either physical or intellectual impairments or life-limiting conditions).

And I wondered why, so many of us trick ourselves into believing that it is okay to dispose of pre-born babies that just don’t make our high expectations for perfection.  If a pre-born child was very much wanted and loved (not that being wanted and loved should be the criteria for why it is wrong to abort in these instances anyway), in the weeks prior to his or her parents finding out that there was something amiss, how does it all change so quickly?  How does the worth of a child depend on its being ‘perfect’ in the eyes of its parents?  Why does the baby so joyfully carried in the weeks prior, all of a sudden become a pregnancy to be terminated?

I suspect that at the very heart of people’s willingness to accept abortion after adverse pre-natal diagnosis is fear.  Fear of the unknown.  Fear of how life might be with this child in it.  Fear of suffering (both the child’s and their own).

Nothing is more powerful than a personal testimony, and there were a few of them.  But the most striking one was of a lady whose three-year-old daughter had been diagnosed in utero with a life-limiting condition which would see her born dead, or, if she survived a “bean bag baby”.  While pregnant the mother would go in for a scan every fortnight, and every fortnight she would be advised to have a “termination”.  Even though this mother thought that the right thing to do was to have the termination, she couldn’t, and so she didn’t.  Her little girl was born perfect.  The doctors had been wrong.

The question needs to be asked by people who believe that it is okay to abort a baby for a fetal anomaly, how many “perfect” babies get misdiagnosed in-utero and are then subsequently aborted by their distraught parents?  Because it does happen, and the doctors know it happens.  Will this knowledge change their opinion of the rightness of offering abortion for fetal anomalies?

It takes great courage for parents to continue their pregnancy after being given what can be at times devestating news. It is even more difficult when they choose to continue the pregnancy but the medical professionals keep offering terminations.  Sometimes, parents who choose to continue giving life to their child are rewarded with a complete misdiagnosis, and they have the perfect baby that they had dreamed of.  Others learn to live a different life than they expected, but one that is often filled with great joy and love.  Sometimes parents need to say goodbye to their precious child at birth, but they do so knowing that they did not end his or her life prematurely.

Pre-natal screening should be used positively, to care for both patients – mother and baby.   Screening should acknowledge the sanctity of the pre-born child’s life.  It’s worth should not hinge on whether he or she is perfect.  Because of society’s hang up on “quality of life”, screening is unfortunatly all too often used to search and destroy, and this is a travesty for families and society.

Anyone in New Zealand needing support after an adverse diagnosis can call Family Life Pregnancy Centre 0800 367 5433

Courageous Parenthood

It is always encouraging to hear stories of modern people who have managed to live their faith courageously.  This week I read of one such woman – a mother who had followed in the steps of St Gianna Molla – postponing treatment for a tumor on her tongue in order that her pre-born child may have life.

Chiara Petrillo (28) and her husband Enrico are shining examples of what it means to be open to life.  Their first child, Maria, was diagnosed in-utero with anencephaly – a condition which meant the baby would have little or no brain.  Their cherished little girl was born full term (despite advise to the contrary) and Maria lived for 30 minutes after birth.

Their second child, David, was diagnosed in-utero with having no legs.  Later in the pregnancy it was discovered that he had conditions that meant he would not live.  Chiara and Enrico chose life once again for their little boy, baptising him immediately after birth.  He died soon after.

Finally, Chiara and Enrico conceived Francesco, a healthy wee boy.  But this pregnancy was to be marred by the discovery that Chiara had a lesion on her tongue.  The couple decided that they would give life to their little boy and postpone treatment until after he was born.  Francesco was born on May 30, 2011.

A year later, Chiara succumbed to the cancer that had ravaged her.

I was struck with awe reading this story.  Not only did Chiara and Enrico have to suffer the loss of their first two precious children, they had to choose whether to postpone treatment which would have possibly saved Chiara’s life.  This young courageous couple chose to choose life at every turn of their short married life.

They chose life even when it meant great suffering.

They chose to be courageous parents.

They understood that their parenthood began right at the first moment of conception, when their little ones were “being formed in secret”.

They understood that a parent loves, protects and nurtures their child right from the beginning.

Chiara and Enrico, courageous parents, faithful Christians, true witnesses to the Gospel of Life.

Let us see how we can be courageous too.