Sunday, March 11, 2012

Saving Down syndrome

This is the fifth post is a series about the new tests that detect Down syndrome in the first trimester of pregnancy. It is our hope to bring awareness to concerns regarding this test, as well as bring a call to action. As always, thoughtful and respectful discussion is encouraged in the comment section.
Ryder

I've asked Mike Sullivan, board member of IDSC for life and spokesperson for Saving Down syndrome, to guest blog for me today. This post is a bit technical, as compared to what you'll typically read here on A Perfect Lily- but I hope you will take the time to read about how other nations are implementing the new tests we've been talking about. I do understand that we live in America, but I think it's important to be cognizant of what is happening in today's culture regarding how Down syndrome is viewed, and what steps are being taken it to "prevent" it.

As I've done in the previous posts in this series, I am including photos that have been shared by readers. We can talk until we're blue in the face about choice and ethics and statistics, but what each of these photos represents is a life...a life that has beauty and value, a life lived with Down syndrome.

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Saving Down syndrome
by Mike Sullivan


The impact of voluntary screening programmes for Down syndrome: The New Zealand and Denmark situations and the case for crimes against humanity.

“People with Down syndrome may soon disappear from the face of the earth.''

Emma




This was the introduction to the 60 Minutes documentary ”Down but not out” that aired in New Zealand in June 2011. 60 Minutes revealed that the new “quality improved” antenatal screening programme would reduce the population of people with Down syndrome in New Zealand through disability selective abortion. The “quality improved” programme was introduced in February 2010, without public consultation.


Savingdowns spokesman, Mike Sullivan, was featured in the 60 Minutes documentary. He said people with Down syndrome and other disabilities are human beings who live full and rewarding lives. “They must be treated on an equal basis with other members of our society, without any form of discrimination.''



Christian


Savingdowns and Right to Life NZ lodged a complaint with the International Criminal Court (ICC) against the New Zealand screening programme in June 2011. The basis of the complaint is that the programme specifically targets and persecutes unborn children with Down syndrome and other rare genetic conditions, through the prevention of their births. This is in effect, an act of genocide and a crime against humanity, under Articles 6 and 7 of the Rome Statute. The Rome Statute forms the basis of operation of the ICC. The Court has confirmed that the complaint is being considered. New Zealand is party to the Treaty of Rome and is bound to comply with any ruling from the ICC.


The emphasis of the ICC complaint is on consequences and intent, with genetic screening and selective abortion being the means. The intent is to identify unborn children with Down syndrome, Spina Bifida and other conditions so that births to the group can be prevented. The consequence is that a substantial part of the group is being systematically destroyed. 


Elina





Antenatal screening for Down syndrome has operated in New Zealand since 1968. It was initially introduced with no public debate or parliamentary direction.  Prior to the “quality improvements” around 54% of unborn children with Down syndrome were being aborted. (In 2008 there were 62 abortions performed where Down syndrome was noted as present and 53 live births).



The Ministry of Health has been unable to provide abortion numbers involving unborn children diagnosed with Down syndrome post “quality improvements” as these statistics have not been collected since 2008. This means that evidence of the numbers of abortions due to the “quality improvements” will no longer be available. The effect will need to be estimated from the remaining birth numbers.

Anya





Cabinet papers obtained under the Official Information Act state that the outcomes of the “quality improvements” will be a reduction in the number of births of people with Down syndrome, with around 90% of unborn children diagnosed with the condition being aborted.







Cason





Item 28 of the Memorandum to Cabinet dated 23 October 2007 stated:
“There is the potential for activities associated with improving the quality of antenatal screening for Down syndrome to have a negative impact on people with disabilities, including:”....
.... (Fourth bullet) ”decrease in the number of babies born with Down syndrome. International experience suggests that as a result of screening and diagnostic tests, up to 90 percent of women who receive an antenatal diagnosis of Down syndrome will choose to terminate their pregnancies.”

In practice the total abortion rate can be expected to be around 78% as not all women will participate in screening.

Cate


The best international evidence available in terms of the consequences of the organised screening can be found in the 2008 Danish study “Impact of a new national screening policy for Down’s syndrome in Denmark: population based cohort study”. The objective of the report was “To evaluate the impact of a screening strategy in the first trimester, introduced in Denmark during 2004-6, on the number of infants born with Down’s syndrome”. This report is directly relevant to the “quality improved” programme in New Zealand. Both countries use identical procedures and the relevant numbers are almost the same. Both the Danish and New Zealand programmes are state funded and voluntary and replace the traditional screening programmes that involved ultrasound scans and invasive diagnostic tests. In 2006 in Denmark there would have been 135 infants with Down syndrome expected to be born in a population of 65,000 live-born infants if the mothers had no prenatal intervention (i.e. abortions). In New Zealand the respective numbers are 125 and around 60,000 live births. 


 
As detailed in the Danish study the introduction of a combined risk assessment during the first trimester at a national level in Denmark in  2004 – 2006 halved the number of infants born with Down syndrome and halved the number of invasive diagnostic tests.



Chloe

Based on the above Danish experience, New Zealand can expect that the number of births of people with Down syndrome to decrease from around 53 per year to 26 per year, with the number of selective abortions increasing from around 62 per year to 93 per year. The overall abortion rate for all Down syndrome pregnancies in New Zealand can now be expected to rise from around 54% to around 78%. The first full year of actual birth numbers following the “quality improvements” will be published in June 2012.

This is the likely impact of the state funded voluntary screening programme for Down syndrome in New Zealand - an overall abortion rate of around 78% of all pregnancies.



Kate

13 comments:

Justine said...

I am guessing the NZ 60 minutes program aired in 2011, not June 2012. The haters will jump on that. Thank you for this post. Very informative!

Leah said...

I have to admit that I'm not quite sure what this post is trying to say. Given the fact that children with Down syndrome are so often born with heart and other medical conditions that could be life threatening, isn't identifying T21 prenatally important for the health of both mother and child? I'm sure this holds true for children with spina bifida as well. Shouldn't the focus be on disability advocacy which raises awareness and addresses social stigma instead of eliminating women's access to what could be a life-saving procedure?

Patti said...

Leah: I agree that this test can provide information that could be beneficial to pregnant mothers. The point of the guest post is that clearly these nations have other motives regarding these tests.

cara said...

Thank you SO mouch for posting this information Patti!! We must be informed. And I totally agree with your comment to Leah. There are motives behind these tests. They are clearly trying to eliminate a people group from our planet that deserves life. We are their voice because we have children with down syndrome and know how much they enjoy life and how much we enjoy their life. Who is going to fight for these lives if we do not? Thank you for fighting Patti. Thank you for being brave to bring the truth to light and give us this information. We must not turn a blind eye to this and pretend it is all about information for women when the truth is obviously before us. It is great to be informed, but not at the cost of these precious lives. Because even if many of these women are pro-choice,a majority (and probably all of them) getting this test done would not abort if they did not get a positive diagnosis for down syndrome. They are in fear of down syndrome, and I love how you are being a voice for our children with down syndrome letting them know how special our children are and why they should be here.

On a lighter note, I am missing Lily!! We are all missing Lily. But we have truly been SO blessed by all of these beautiful, beautiful faces on here these last few days. There truly is something extra, extra special about people with down syndrome. I wish everyone got this.

Anonymous said...

I agree with Cara! Leah, as a nurse, I understand what you're saying, but before technology came about there weren't any choices to be made...we are a confused world that has too much information sometimes :)

Mike Sullivan said...

Hi Justine, the June 2012 date is when the full year of data for births of babies with Down syndrome will be available since the new "quality improvements" were introduced in February 2010 in New Zealand. That is when we will have hard facts about the impact of those "improvements".

Yes, the 60 Minutes documentary was June 2011.

Mike Sullivan said...

Hi Leah, A prenatal diagnosis of Down syndrome is not required to manage medical issues, as these would be picked up through standard prenatal health care that is directed towards saving lives. A diagnosis of Down syndrome is only required for disability selective abortions.

When the quality improvements were introduced, the reason was to reduce the loss of "normal" babies through invasive testing, those thatwere being acccidently miscarried from the tests that were seeking out the ones with Down syndrome. At the same time, the evidence was stated that the improvements would reduce the number of births of those with Down syndrome through abortion. In fact, when looking at the figures, the actual mortality rate from the improvements increases - more unborn children with Down syndrome are aborted than those saved from the reduced number of invasive tests. The only differance is that it is considered unethical to loose "normal" babies whilst ethical to detect those with Down syndrome so they can be aborted. See http://issuu.com/savingdowns/docs/screening_mortality_numbers

Team Lando said...

These tests make me so sad. I am SO grateful for our prenatal diagnosis. Otherwise, I would have been in shock and mourning the fact that my baby wasn't what I expected while she was having surgery. But the marketing for these tests is what gets to me. They could provide something useful - preparation and information for parents. Instead, they're marketed as tools to get rid of babies like mine.

nicole said...

Mike ~ thank you for your valuable work! Your comment in response to Leah was very informative. Thanks for sharing, Patti ~ and as usual, all the pictures speak volumes.

Mrs. K said...

Once again I looked at all the pictures first and it warmed my heart, brought a huge smile to my face and tears to my eyes. I love each and everyone of these precious children. They are "special", special children created by God for a purpose, given to special parents whether natural parents or adoptive parents. God has His plans and the people messing with those plans had best be aware of the consequences. Yes, He is a loving and forgiving God, slow to anger but I wouldn't want to be in the shoes of those who have angerd Him.

Thank you Mr. Sullivan for your wealth of information. Thank you Patti for stepping up and taking on the fight for life!!

PS. I MISS MY LILY ANNE'S PICUTRES!!!

Anonymous said...

I was speaking to my oldest son about this very issue last night. He is 13 years old but very mature and I think it is important to begin these conversations at an early age. I mentioned that under the new healthcare law they would begin by offering "prenatal" testing for free (which I'm sure will soon move from "free" to "mandatory") which is obviously hoping to prevent the birth of these babies which a large segment of society considers imperfect and therefore inferior. He thought for a few moments and then asked "Isn't that kind of like the Holocaust?" Sadly, it is VERY much like the Holocaust.

Stella McLeod said...

Re Team Lando's comment about marketing. In actual fact antenatal screening IS marketed to parents as information, preparation and "choice". They are marketed to governments and health insurance providers as being "cost-effective", i.e. it is cheaper to "prevent births" (abort) than pay for a life time of care (medical, educational, welfare). On average, people with Down syndrome have relatively long lives it is more cost-effective to specifically target them for "termination" before birth. Sure along the way some of the babies with rare conditions and usually very short lives are detected, but it wouldn't be cost effective to just screen for them and leave the babies with Down syndrome alone. Screening early in pregnancy is primarily related to abortion. Later screening would be more useful from a preparedness point of view, though sadly even then some babies get aborted. Make no mistake, early antenatal screening is NOT about reassuring or preparing parents, it's about being able to have a "safer" abortion at a time you may not yet have told other people you are pregnant, before you can feel the baby moving and before their deaths will have to be counted in perinatal mortality statistics (in NZ that's from 20 weeks gestation, some countries it's later).

Kiara Buechler said...

Patti,

I just saw this article on my local radio stations website. makes me sick:

http://mynorthwest.com/?nid=76&sid=643649