More choline for mom decreases Down syndrome effects

By Brian Friedlander from the Cornell Chronicle:
Fetuses with Down syndrome dramatically benefit when their mothers increase their intake of the nutrient choline during pregnancy and nursing, report Cornell researchers in the journal Neurobiology of Disease. Increased choline by moms bolsters brain functions and plays a profound health role for Down syndrome offspring throughout their lives.
Increased maternal choline intake improves spatial cognition and attention, and delays aging-related memory decline in normal laboratory rats.  The present findings with Down syndrome mice indicate that increased maternal choline consumption may also lessen the impairment of individuals with Down syndrome and reduce the risk of Alzheimer’s disease, which is seen in nearly all Down syndrome individuals.

The Unfinished Child, a Story of Down Syndrome, Love, and Choice (and a Book Giveaway)

by Amy Julia Becker of Thin Places-Faith, Family, & Disability from Patheos.com:
Over the past month, I have had the privilege of corresponding with Theresa Shea, author of The Unfinished Child, a novel about two families whose lives are affected by Down syndrome. In one narrative, set in the mid 1940s, Margaret gives birth to Carolyn, and her doctor convinces her to send Carolyn to an institution immediately. In the other, set in the early 2000′s, Marie finds out that at age 39 she is unexpectedly pregnant (with a husband and two tween daughters), and that her baby has Down syndrome.
I am fairly confident that I would have loved this book even if I didn’t have a child of my own with Down syndrome, because it’s not really about Down syndrome. It’s about family and suffering and compassion and culture and love and why we make the choices we make.
Thankfully, Theresa Shea agreed to an interview with me, which I will print here today and tomorrow. Meanwhile, I hope you will purchase or download your own copy of The Unfinished Child today.
How did you come up with the title The Unfinished Child? 
Originally, I had another working title for the book, but one day I came across an article in a medical journal that explained doctors used to call babies born with Down syndrome “unfinished children” because it was believed that their bodies hadn’t fully developed in the womb. Right away I thought — there’s my title.
For me, the title resonates on so many levels. The unfinished child can refer to the baby with Down syndrome or the baby that is terminated. On a more abstract level, it refers to everybody, for I often wonder if any of us are every really “finished.” Aren’t we all a work in progress?

when the perfect baby you adore suddenly becomes a stranger

from the Daily Mail:

You would think it’s something that you — not to mention the midwives — would notice immediately. But it was two months before I was given the news that changed everything.

I was feeding my baby Xavier on New Year’s Eve in 2008 when the consultant rang. Terror pulsed through my veins as he told me: ‘Your son has Down syndrome.’

I’m not proud of my reaction that day, but I felt utter devastation. I panicked it would render him — and me — an outcast.

Less than a year before, I’d been a carefree party girl with a career as a novelist and living in London. Then came a very sobering unplanned pregnancy, discovered only days after splitting up with my boyfriend-of-sorts. And now another unexpected, far more terrifying mountain lay ahead of me.

Four-and-a-half years on, I can honestly say my initial fears were unwarranted. In fact, I think Xavier’s diagnosis made me confront my sudden motherhood head on.

I’m not saying I wouldn’t have been a good mother without it, but I was certainly jolted into action. It was as if I’d been given an electric shock that sent me headlong into parenthood in a way I’d never imagined.

Outlawing Abortion Won’t Help Children with Down Syndrome

by Allison Piepmeier from The New York Times:
My daughter, like all kids, is a delight and a lot of work. Now 4, she talks nonstop, although her speech isn’t always comprehensible. She reads. She performs class conversations for me: “What does a cow say? Moo. Great work, Maybelle!” This evening she sang me “I’m Just a Girl Who Can’t Say No” from “Oklahoma!” (a song that, in my daughter’s case, is clearly untrue because she excels at saying no).

Maybelle has Down syndrome, a condition I knew almost nothing about before she was born. During the four years she has been alive, I have been repeatedly surprised by her curiosity, her individual sense of humor and how much she has accomplished. She doesn’t fit the stereotypes at all. For this reason, it is troubling to me that rates of termination for pregnancies where Down syndrome is identified are extremely high. The most recent research suggests that for every child born with Down syndrome, another is terminated. With the increasing availability of noninvasive prenatal tests that can take place within the first few weeks of pregnancy, many in the Down syndrome and disability rights communities fear that abortion rates will skyrocket, that a process often identified as eugenic will escalate, and that Down syndrome will essentially be eliminated — at least among those with the resources for prenatal testing and the desire to terminate.

That is why some parents of children with Down syndrome are celebrating the news that North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome. One parent wrote that “it felt like a small victory seeing that abortions based on Down syndrome were banned — like saying, see, individuals with Down syndrome are valued and protected.”

Surrogate Mother Flees Halfway Across US to Save Baby From Intended Parents

by Kevin Dolak from ABC News:
The travails of carrying a baby for another couple took an emotional turn for a Connecticut surrogate whose ultrasound showed a fetus with birth defects. Her life was turned upside-down as she coped with pleas and even a monetary offer from the intended parents to abort while discovering that legally she had no rights over the pregnancy in her state, leading to a secret flight halfway across the U.S.
Crystal Kelley was a single mother of two girls when she decided to become a surrogate. In late 2011 Kelley, 30, wanted to help a couple conceive and she could use the surrogacy fee – often upwards of $20,000 -- to supplement her income as she raised her girls. Kelley outlined her experiences on her blog, Surrogate Insanity.
Through a surrogacy agency, Kelley was able to find an established family in New York with three other children who wanted to conceive. According to her blog, the couple, who have not been named, said they had two frozen embryos, which were transferred to Kelley in October 2011. Soon, she was pregnant.
The pregnancy started off fine. Kelley said that she received not only the financial support that she had expected from the intended parents of the baby, but emotional support as well. The intended mother called her frequently to check in and even bought Kelley's daughters Christmas presents.
But everything changed with her surrogacy on the day of her 21-week anatomy scan.
As Kelley explained in her blog, she saw flickers of concern come across the technician's face during the scan. Then she starting getting alarming messages from the intended mom, Kelley wrote.
"This is not good, this is a problem," a frantic series of texts from the intended mother read, according to Kelly. "We have to do something right away."
The scan showed that the fetus, which they had discovered was female, had a cleft palette. The unborn baby also had a cyst on her brain, Kelley wrote. They suspected that the baby had Down syndrome.
As Kelley explains it, after she went for a maternal blood screening test to check the fetus for Down syndrome, the intended mother called her and said she wanted her to abort, saying that the couple "do not intend to bring a child into the world that has a significant disability and will require several surgeries to survive," according to Kelley.
She realized that the midwives, who had contacted the facility, told the intended mother of the baby that there was cause for concern, Kelley wrote.
Kelley wrote that she was shocked. She didn't think the couple were the "'baby's not perfect, let's terminate type." She checked the contract she signed with the couple, which stated that for an abortion/reduction, there must be a "severe fetal abnormality," she wrote.

parents of woman with down syndrome, 21, cannot have her sterilized, rules judge

by Daniel Miller from the Daily Mail (UK):
The parents of an 'affectionate' 21-year-old woman with Down's syndrome have been forbidden from having her sterilised despite their concerns she could fall pregnant.In a landmark ruling at the Court of Protection in London, Mr Justice Cobb concluded that such a procedure would be 'disproportionate'.He said the case engaged important human rights considerations and that  the woman, referred to as K, lacked the capacity to understand and weigh up the options for herself. The parents feared their daughter, who does not have a boyfriend and had expressed no interest in having one, could easily be taken advantage of. But Mr Justice Cobb said there were less restrictive methods of 'achieving the purpose of contraception' which should be tried first.

He added it was in the woman's best interests that he should 'bring as much clarity to medical treatment issues' as he could.

He wrote in a statement: 'The issue which divides the parties is whether I should declare in these proceedings at this stage that it is not in the woman's best interests to be the subject of a sterilisation procedure'.

'No-one can doubt the seriousness and significance of a sterilisation procedure. Further surgery would be required to reverse it, and then only with a moderate prospect of success.'

Mr Justice Cobb said the woman was part of a 'loving' and 'supportive' family and said he had read 'nothing but praise' for her parents.

The parents, referred to in court as Mr and Mrs K, had gone to see a specialist who had originally supported the idea of sterilisation but a second expert had suggested other forms of contraception.

The judge added: 'Although Mr and Mrs K expressed concerns that K is occasionally 'tactile' and 'overfamiliar', that she has begun to be more aware of the 'opposite sex', and is vulnerable to sexual exploitation.

'I note that K is well-supervised at home and at college; there is no evidence she is seeking a sexual relationship.'

The judge said the local authority had begun proceedings in the Court of Protection, which is part of the High Court and analyses issues surrounding the care and treatment of sick and vulnerable people.

He said he had made a declaration under the provisions of mental capacity legislation after the woman's parents disagreed with a local authority - and medics - about the best way 'to achieve contraception'.

He added: 'I have sought to achieve the right balance between protection and empowerment.

'It is my judgment that sterilisation would be a disproportionate (and not the least restrictive step) to achieve contraception for the woman in the future.'

The judge said risk management was 'plainly' better than invasive treatment and less restrictive.

Mr Justice Cobb added: 'It is in the woman's best interests that I should make this declaration now; I do not believe that it is in her best interests that this issue should be left unresolved.'

And the judge said the woman's parents had concerns about how pregnancy would affect their daughter.

'Have become increasingly concerned that as K becomes older their ability to control and supervise aspects of her life will be reduced,' he added.

'Were she to become pregnant at any time in the future they believe this would have a seriously adverse effect upon her.'

Read more: http://www.dailymail.co.uk/news/article-2279562/Parents-Downs-syndrome-woman-forbidden-having-sterilised-despite-fears-taken-advantage-of.html#ixzz2LNOq4qgh

NDSC, NDSS & GDSF Collaborate on Prenatal Testing Issues

National Down Syndrome Congress, National Down Syndrome Society and Global Down Syndrome Foundation Collaborate on Prenatal Testing Issues  Multiple educational resources and tools exemplify unity around important global issues

The National Down Syndrome Congress (NDSC), the National Down Syndrome Society (NDSS), and the Global Down Syndrome Foundation (Global) announced a collaborative effort to create multiple educational resources and tools to address prenatal testing issues facing pregnant women as well as the Down syndrome community. Earlier this month, the Global Down Syndrome Foundation, and the National Down Syndrome Congress published the first Down Syndrome Prenatal Testing Pamphlet, an accurate, informative, easy-to-read resource for pregnant women and their families. The pamphlet is available in English and Spanish at www.downsyndrometest.org and is being distributed to pregnant women and to medical professionals who work with pregnant women. The creation of the pamphlet included input from medical professionals, parents, and survey results from over 200 people in the Down syndrome community. "NDSS applauds the efforts of NDSC and Global in getting this pamphlet out to women and families. NDSS has a long history of working on prenatal testing issues, and the NDSS statement on prenatal testing guides our involvement on this critical issue for our community, along with our Prenatal Testing Committee, made up of providers with decades of experience on prenatal testing, self-advocates, parents, board members, and staff," said Jon Colman, President of NDSS. In addition to the Down Syndrome Prenatal Testing Pamphlet, the NDSC and Global support the prenatal testing information state advocacy initiative being rolled out by NDSS. As part of its effort to ensure accurate, up-to-date and balanced information on prenatal testing, NDSS has created a first-of-its-kind toolkit that encourages states to pass legislation modeled after a bill recently passed in Massachusetts. The legislation echoes the Prenatally-Postnatally Diagnosed Conditions Act (also known as the Kennedy-Brownback bill), which increases the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. This toolkit includes state model legislation and advocacy tools. NDSS is working with local Down syndrome organizations and its statewide government affairs committees to pass prenatal information laws in several states. "The work of the NDSS and our pamphlet truly go hand in hand," said David Tolleson, Executive Director of the NDSC. "They are making the requirements of the Kennedy Brownback Bill - providing accurate information about prenatal testing and Down syndrome at the point of diagnosis - stronger on a state by state level. As they succeed, we will be there with our pamphlet to fulfill that requirement." "Working with NDSC and NDSS has been so exciting. As a parent, it is heartwarming to see so many excellent organizations coming together working on important global issues that affect hundreds of thousands of people," said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. "Besides NDSC, NDSS and Global, we now have Down Syndrome Affiliates in Action, the International Mosaic Down Syndrome Association and so many others. I honestly believe that today, more so than any time I have seen in the past, there is such a wonderful sense of passion, purpose, and professionalism in the Down syndrome community. When you put those three "p's" together the impact we are having is truly astounding." NDSC, NDSS and Global all have important information about prenatal testing and facts about Down syndrome on our websites. To view that information, please visit: www.ndsccenter.org/resources/new-and-expectant-parents  http://www.ndss.org/Resources/New-Expectant-Parents/Understanding-a-Diagnosis-of-Down-Syndrome/ http://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome

About the National Down Syndrome Congress Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them.  A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.  Best known for its annual convention - the largest of its type in the world - the National Down Syndrome Congress is a grassroots organization recognized for its "family" feel, its "We're More Alike than Different" public awareness campaign, and, its outreach to individuals from diverse backgrounds. About the National Down Syndrome Society Since 1979, the National Down Syndrome Society ("NDSS") has worked to promote the value, acceptance and inclusion of people with Down syndrome. NDSS has about 350 affiliates nationwide. The NDSS National Policy Center works with Congress and federal agencies to protect the rights of people with Down syndrome, and educates individuals to advocate on local, state and national levels. The largest NDSS public awareness campaign is My Great Story, which ignites a new way of thinking about people with Down syndrome by sharing stories written by and about them. The National Buddy Walk Program includes over 250 walks. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. About the Global Down Syndrome Foundation The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation's primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show -- the single-largest annual fundraiser benefiting people with Down syndrome. Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

 

Eggs and Lean Meats Prevent Emotional, Metabolic Disorders and Down Syndrome in Fetuses?

by S.C.Stringfellow from Counsel & Heal:
In a study that adds more confusion as to whether or not red meat and eggs are good for you, a study in the FASEB Journal claims that nutrients found in the above food stuffs may have genetic benefits for a fetus.
Nutrition scientists and obstetricians at Cornell University and the University of Rochester Medical Center found that higher-than-normal amounts of choline, found in eggs and meat, in the diet during pregnancy changed modifications in the DNA of a fetus that tells certain genes gained from the mother to switch on or off.
Namely, the genetic markers responsible for all our hormonal activity such as growth, our response to stress and metabolism speed, among other things.

The results were derived from an experiment which involved a study of 26 pregnant women in their third trimester who were assigned to take 480 mg of choline per day, an amount slightly above the standard recommendation of 450 mg per day, or about double that amount, 930 mg per day.
The findings indicated that fetus' of mothers were less likely to develop stress or metabolic disorders such as anxiety, depression, obesity, hypertension  and Down Syndrome, than those who took the 480 mg and even more protected than those who have less choline intake.
While more research is needed, Caudill says that her message to pregnant women would be to consume a diet that includes choline rich foods such as eggs, lean meat, beans and calciferous vegetables like broccoli.

"One day we might prescribe choline in the same way we prescribe folate [acids such as those found in orange juice] to all pregnant women," notes Pressman, the James R. Woods Professor in the Department of Obstetrics and Gynecology. "It is cheap and has virtually no side effects at the doses provided in this study. In the future, we could use choline to do even more good than we are doing right now."

Read more at http://www.counselheal.com/articles/2906/20120921/eggs-lean-meats-prevent-emotional-metabolic-disorders-down-syndrome.htm#zkGX03ciYb4dltS6.99

will Sue Sylvester's baby have Down syndrome in "Glee" season 4?

Glee Spoiler Alert!

from Wetpaint by Beth Douglass and Ryan Gajewski:
Back in Glee Season 3, Episode 15: “Big Brother,” an abnormal test result gave Sue (Jane Lynch) the shocking news that her unborn baby might potentially have Down syndrome. Nothing could be certain, though, so we still held out hope that Sue might give birth to a happy and healthy little tot.
Sadly, it seems that just won’t come to be. Jane Lynch spoke with E! Online on August 5, she shared that though Sue will have “just given birth to a beautiful baby girl” when the show returns for Season 4 this fall, the tiny infant also “has Down syndrome.”
Given the care and sensitivity Sue has displayed when working both with Becky (Lauren Potter) and with her late sister, Jean, we have no doubt that the new mother will more than rise to the occasion. Plus, can you imagine a Sue-Becky-Baby trio — how adorable will that be?

from Glee Wiki:
Sue is currently pregnant as of On My Way. In Big Brother, she finds out that her child is female and has a high risk of having Down syndrome, similar to how her sister Jean and cheerio of hers, Becky, the two people closest to her, had Down syndrome. Her baby will be born by the time season four starts

also from Glee Wiki:
In Big Brother, Becky shows up in Sue's office door, hovering without saying anything. Sue tells her that she is, in fact, interrupting. Becky tells Sue that she heard about her baby. Sue had learned earlier in the episode that there were irregularities in the test results for the baby, so she clearly assumes that is what Becky is talking about. When Becky says that she heard the baby is a girl, Sue smiles and says, "Just like you," and hugs her, thoughtfully repeating the phrase, indicating that the baby likely has Down syndrome. Becky offers up a parenting tip for Sue to work on her patience.

from teen.com:

Sue gets good — and bad — news about her unborn baby. The good news? It’s a girl, like she wanted. The bad news? She finds out that there were some “irregularities in the amnio” and that her baby has Down Syndrome like Becky. Ok, it’s not unlikely that that would happen to a woman of her age that’s pregnant — but it is unlikely that she’s even preggers in the first place. From a “celebrity” sperm donor. Puleez.

from the Washington Post by Jen Chaney:

Before moving on to the musical numbers assessment, I should probably also note that Sue Sylvester found out that her unborn baby girl likely has Down syndrome, and that she’s also still feuding with Nene Leakes, who is now co-coach of the Cheerios.

from Remington Remer:

Anyways, the ironic part...Sue Sylvester the cheerleading coach (which you would have done too to be just like your favorite Aunite) found out she was pregnant with a girl that may have Down's Syndrome. That part in the show made me smile and the reason there were no tears is because to me you would have to be lucky to have a baby with Down's Syndrome just like you. Sue Sylvester hugged one of her cheerleaders, Becky because she also has Down's. Becky told Sue the only advice she had was for Sue to be "Patient!"

from E Online by Bret Malec and Liz Calvario:

Meanwhile, Lynch also dished on what's in store of Sue Sylvester and her new baby in season four of Glee.

"Momentarily I'm nice," she said. "I've just given birth to a beautiful baby girl who has Down syndrome and her name is Robin. Which to say hearkens thoughts of spring and new beginnings and her favorite Bee Gee."

Journalist admits she would seriously consider aborting an IVF baby with Down syndrome

from Daily Mail by Toni Jones:
41-year-old Samantha Brick is desperate for a child.
Having tried to conceive naturally without success for four years her and her husband embarked on their first round of IVF treatment earlier this year.
The gruelling process has a very small chance of working for women over the age of 40.
Yet today the journalist told This Morning that if she does manage to conceive and then learns that the baby has Down's Syndrome she would seriously consider aborting it.

Despite spending thousands of pounds on trying to conceive many women are deciding to abort babies after learning that they will be born with the genetic condition, leading some anti-abortion campaigners to claim that they are treating babies like designer goods.
Is it right to choose the option of a termination after under-going such an emotional and physical treatment?
Samantha believes that it is totally justifiable.
She said:
'My husband and I have been trying for a baby for four years. It is not easy, all around me friends are conceiving and building up their families.
'Every month you hope for the miracle baby, and when that doesn't happen you just keep going and keep going.
'My firs attempt at IVF failed and my husband I have discussed in depth and at length whether we could keep a baby diagnosed with Down's Syndrome.
'I live in France,I know that people there don't have the same support, I would have to send my baby to a centre on Monday morning and then welcome them back on Friday night.
'I already have a large family including ageing in laws with their own problems and so it's not just myself that I have to think about it's everyone else in the  family and what that imapct would have on them.'

Samantha also raisd the issue of being an older parent to a Down's Syndrome child.
She says: 'I'm 41 now. What will happen to that child with Down's Syndrome if anything happens to me?
'I'm not just having a glass of wine and deciding to terminate a baby.
It's a huge decision and one I wouldn't take lightly at all.
'I actually think it would be selfish to HAVE that baby because of the impact on the local health services, the cost of raising that chlid and the support it would need.'
Also on the sofa was weather girl Claire Nasir, 42, who was told after conceiving through IVF that the chance of her having a Down's Syndrome baby was 1 in 20, but decided to go ahead with her pregnancy and has since had a healthy baby without the condition.
Claire said: 'When the doctors told us that there's a very high risk of Down's Syndrome - one in 20 - I was absolutely shocked.
'My reality changed, I went from the joy of being pregnant after so many years to having to have a tricky conversation with my husband about what we should do. 
'But I had produced this beautiful little feotus and was going to love the baby whatever.
'I went in to having IVF and getting pregnant with my eyes open to any consequences I would have to face.
'I don't think I have any right as a human being to choose that - I'm just lucky to have a miracle in the first place.'

As a journalist, Samantha has spent four years researching the risks while she has been trying to get pregnant, she says: ''50-70 per cent of couples who have a child with a disability end up spitting up.
'I want to have a child with my husband because I love him, I'm really happily married and I can't forget him as a factor
'I would love to have a child but he has a right in this argument too.
'I would hate to end up as that statistic.'
Talking exclusively to the MailOnline after the interview Samantha said: 'I absolutely stand by my comments and the position I took today. Far from being selfish, I believe I'm being selfless in putting the needs and wishes of those around me above my desire to be a mum.
'Its important to honestly debate such a difficult issues especial as 9 in 10 women will terminate such a pregnancy.
'My family and I have between us worked with hundreds of people with Downs Syndrome. Let's stop 'Disneyfying' this genetic condition and ensure families, and potential parents, can debate and discuss and have the full unbiased facts of exactly what they're getting into.'

Video: Samantha and Claire debate the issue on This Morning. Watch the full interview here.

http://www.dailymail.co.uk/femail/article-2178789/Samantha-Brick-Journalist-admits-seriously-consider-aborting-IVF-baby-Downs-Syndrome.html

Dozens of IVF babies are being aborted because they have Down syndrome

from Daily Mail from Daniel Martin:
Dozens of test tube babies have been aborted because they had Down's syndrome.
Over five years, a total of 123 foetuses conceived through IVF-type treatments were terminated after the mother was told they suffered from the genetic abnormality.
That equates to a termination on average once a fortnight.

Often the women will have spent years trying to become pregnant and may have spent thousands on private fertility clinics in the hope of conceiving.

Last night, anti-abortion campaigners said the statistics on IVF terminations showed that some women treat babies like 'designer goods' – paying a fortune to conceive but then aborting them when they turn out not to be perfect.

Down's syndrome is a genetic condition caused by the presence of an extra chromosome in each cell.

The children grow up shorter than usual and often have learning or behavioural difficulties.
There are believed to be around 60,000 people in the United Kingdom with the condition.
Statistics show that in 2009, the most recent year for which figures are available, a total of 127 abortions were carried out on babies conceived through IVF-type assistance.

The data held by the Human  Fertilisation and Embryology Authority shows that Down's syndrome was the most commonly given reason for an abortion, cited in 31 of the cases – three times as many as in 1999.
Foetal abnormality was the next biggest reason for abortion, accounting for 19 cases, while 15 babies with Edward's syndrome – another condition caused by the presence of an extra chromosome – were also terminated.
As it is not mandatory for reasons for terminations to be recorded, the number could be higher. No reason was given in 22 cases. Between 2005 and 2009, some 123 foetuses with Down's were terminated.
Andrea Williams, of Christian Concern, said: 'We have to question the values of a society which focuses so greatly on adult “wants”.
'That a woman pursues a baby through fertility treatment and then aborts it because it is not perfect is selfish and harsh.'
Josephine Quintavalle, of campaign group Comment on Reproductive Ethics, said: 'It is generally accepted that there is a significant under-reporting of abortions of babies with Down's syndrome, but I think we are especially saddened when we read of such abortions in association with IVF, where the women involved were clearly originally desperate to have a child.'

The number of abortions carried out because of Down's among those who conceived naturally is more than 1,000 a year – or three a day. Around nine in ten women who are told they are going to have a baby with the condition opt for a termination.
The number of terminations among potential IVF mothers could be influenced by the fact women often turn to fertility treatment later in life, when the risks of conceiving a Down's syndrome child increase markedly.
Women over the age of 40 are 16 times more likely to have a Down's pregnancy than a woman under the age of 25.
Last year around 15,000 children were born through assisted conception such as IVF, with more than half the mothers paying privately.
A spokesman for the Down's Syndrome Association declined to comment on the figures. The charity campaigns for better counselling to help parents make the right decision for them.
A spokesman for abortion provider Marie Stopes International said:  'We encourage anyone in this situation to find out as much information as possible about the implications of continuing the pregnancy before making their choice.'

Read more: http://www.dailymail.co.uk/health/article-2174068/Dozens-IVF-babies-aborted-Downs-syndrome.html#ixzz20nBys3pC

Sequenom stock price rises on new Down syndrome test forecast

from Business Week:

Shares of Sequenom Inc. jumped Monday after the company said demand for its MaterniT21 Down syndrome test is continuing to grow.

THE SPARK: Sequenom said it performed more than 4,900 MaterniT21 tests in the first quarter, and it now expects to run 40,000 tests in 2012. The San Diego previously expected to run 25,000 of those tests.

THE BIG PICTURE: MaterniT21 is a prenatal blood test intended for women who are at high risk of carrying a fetus with Down syndrome. Sequenom says the test can detect the chromosomal anomaly that causes Down syndrome as early as 10 weeks of pregnancy. It is intended to be less invasive than amniocentesis and hormone testing.

Sequenom said in March it was aiming to perform at least 25,000 billed tests in 2012, but it also said those figures should improve because it has expanded its sales force. The company is scheduled to report its first-quarter results after the market closes on May 3.

Sequenom also paid $1.3 million to buy patents belonging to Helicos BioSciences Corp.

THE ANALYSIS: Jefferies & Co. analyst Jon Wood said Sequenom's revenue is going to be uneven until health insurers and government programs formally cover MaterniT21. He does not expect that to happen until early 2013.

SHARE ACTION: Shares of Sequenom rose 36 cents, or 9 percent, to $4.35 in afternoon trading. Sequenom stock is down 24 percent since Feb. 6.

validating statistics regarding aborted pregnancies with a Down syndrome diagnosis

from PolitiFact Ohio:

"The fact is 90-percent of Down Syndrome children were aborted in this country."
Mike DeWine on Monday, February 20th, 2012 in an interview with MSNBC

Ohio Attorney General Mike DeWine caused quite a ripple in the Republican presidential primary race when he dropped his endorsement of Mitt Romney and threw his support behind Rick Santorum.

Santorum’s holds some ultra-conservative views, especially when it comes to women’s reproductive rights. He opposes birth control and abortion.

Enter DeWine, who served with Santorum in the United States Senate and became a close friend. Now that he is backing him, DeWine found himself trying to calm the flames left behind by Santorum as he stomped through Ohio for the March 6 GOP primary.

DeWine appeared Feb. 20 on MSNBC’s "The Last Word with Lawrence O’Donnell" and was asked about Santorum’s assertion that amniocentesis, a prenatal screening test, directly leads to an increase in the number of abortions. Santorum had made the claim earlier that day on the campaign trail in Ohio.

Would DeWine advise Santorum to stop talking about amniocentesis, O’Donnell asked. DeWine responded he would not, adding that Santorum was correct.

"The fact is 90-percent of Down syndrome children were aborted in this country," DeWine responded. "Maybe some people don’t think that is a problem. I’m shocked by it. I think it’s a sad commentary. And what he was simply saying is the government should not compel every insurance policy that is written to cover that."

DeWine went on to share a personal story, saying that his wife declined prenatal testing during her eighth pregnancy when the doctor told her that if problems were detected with the fetus that abortion could be an option.

"My wife said, ‘no, I’m not going to do that,’ " DeWine said.

DeWine’s 90-percent figure caught PolitiFact Ohio’s attention.

His claim is similar to one made by state Rep. Richard Corcoran during a debate over six abortion bills in the Florida House of Representatives. Politifact Florida checked Corcoran’s statement in April 2011 and rated it True.

More recently, PolitiFact national rated a similar comment from Santorum. After finding some additional information about the data, Santorum’s claim got a rating of Half True. We’ve incorporated that data here.

Corcoran cited a New York Times article from 2007 that discussed how effective prenatal testing to detect Down syndrome could reduce the number of children born with the genetic condition, and how parents of children with Down syndrome were trying to convince others not to abort fetuses that tested positive for the condition.

The story included almost the same line that Corcoran used — that "about 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion."

The story linked to a 1999 study from the Psychology and Genetics Research Group at King’s College in London which discussed abortion rates after a prenatal diagnosis of Down syndrome. It compiled results from 20 other studies measuring abortion rates and concluded that, following a prenatal diagnosis of Down syndrome, 92 percent of women chose to have an abortion.

Other studies showed similar percentages.

A study from Wayne State University in Michigan examined 145 pregnancies with a prenatal diagnosis of Down syndrome from 1988-97 and found that 19 (13.1 percent) women chose continuation of the pregnancy, while 126 (86.9 percent) chose termination. Another study examined 131 prenatally diagnosed cases of Down syndrome in Hawaii from 1987-96 and found that women in 110 of those cases (84 percent) chose to have their pregnancies terminated. A study in San Francisco published in 2006 found an overall rate of 81 percent.

That data was cited to rate Corcoran’s statement.

However, in additional research for the Santorum comment and for this article, PolitiFact found information that makes the question less cut-and-dried.

A joint statement from the American College of Obstetricians and Gynecologists and other groups cautioned against generalizing about national patterns from a series of smaller, local studies.
   
"No current, comprehensive estimate of the number of pregnancy terminations following prenatal diagnosis exists," the statement said. "Several studies reporting older data, studies from single centers and studies from other countries have reflected variation in the number of pregnancies terminated. These studies are frequently cited, but given their limitations, are difficult to generalize to the current population of pregnant women in the United States. Undocumented observations from prenatal genetic counselors in the United States suggest that the rate of termination for prenatally diagnosed Down syndrome may vary across the country. New research is called for to comprehensively explore the uptake of prenatal testing and the outcomes of prenatally diagnosed pregnancies in order to more accurately define how women currently incorporate prenatal testing into their lives."

Mark I. Evans, a physician and president of the Fetal Medicine Foundation of America and a professor of obstetrics and gynecology at Mt. Sinai School of Medicine, emphasized that the percentage can vary significantly based on region and other factors.

"In liberal areas such as New York City, probably 80 to 90 percent of patients with severe abnormalties do choose to terminate when legal to do so," Evans said. "In conservative areas, the proportion of terminations is much lower, perhaps as little as 10 percent" in some cases.

The issue is addressed, too, in a paper in the journal Issues in Law & Medicine titled "Informed Consent or Institutionalized Eugenics? How the Medical Profession Encourages Abortion of Fetuses with Down Syndrome." The paper cites the example of a professor and practitioner, Elizabeth Gettig, who found that "almost 100 percent" of women with a Down syndrome diagnosis chose to abort when she practiced in North Carolina, but the number dropped to about half when she relocated to Pittsburgh. Gettig offered several reasons for the disparity.

"First, the Pittsburgh region has a higher percentage of Catholics," the paper said. "Second, there are more services than most cities in Pittsburgh to assist children who have disabilities."

There is an element of truth in DeWine’s claim. A number of studies have shown an abortion rate from 80 percent to 90 percent.

But all of those studies were localized. And we found experts who cautioned against applying that kind of research to the country as a whole, as DeWine did.

And DeWine’s comment was broader than Corcoran’s or Santorum’s and broader than what was encompassed in the studies.

Corcoran and Santorum specifically referred to cases in which there was a Down syndrome diagnosis. That also was the focus of the research.

In the interview, DeWine was asked about Santorum’s comments about pre-natal screenings and abortion. But his claim, that it’s a fact that "90-percent of Down syndrome children were aborted in this country," made no such mention of screenings and a Down Syndrome diagnosis. His statement would also include, for example, Down syndrome children born to mothers who had no prenatal testing.

That’s a critical fact that would give a different impression of the accuracy of his claim.

On the Truth-O-Meter, DeWine’s statement rates Mostly False.

2 separate pregnancies with Down syndrome - "I wouldn’t change anything"

from The Herald by Rosemarie Milsom:

When Dakota Skye Rutherford was born after a traumatic caesarean section on November 5, 2006, her parents Joelene and Rob were overwhelmed by shock and sadness. A couple of hours after Joelene emerged from the disorientating fog of the general anaesthetic, a doctor confirmed what the couple already knew in their hearts: their daughter had Down syndrome.
‘‘She was sound asleep when Rob handed her to me,’’ Joelene, 26, remembers, ‘‘but I could tell straight away because of the shape of her eyes, her chubby little face. Even though we knew, hearing the specialist say it broke us in half.’’
 
The joyful congratulatory messages and gestures that envelop new parents, particularly after the birth of a much-anticipated first-born baby, were replaced by commiseration and tears. ‘‘The whole family cried their eyes out,’’ Joelene says sadly, her eyes downcast. ‘‘It was like someone had died,’’ adds Rob, who is seated opposite in the lounge room of the family’s rented Cardiff home.
 
The couple was thrust into the confusing and frightening new world of disability. Hospital staff proffered books and information sheets about Down syndrome, a nurse listed the reasons why Dakota had been diagnosed and other medical staff discussed, says Joelene, ‘‘the negatives’’ of the condition. A visit from a family with a child with the condition was hastily arranged.
 
They were also put in contact with Down Syndrome NSW, which provides support to families trying to navigate their way through emotion and information overload.
 
‘‘The first thing we say when we meet new parents is ‘congratulations’,’’ family support officer Judy Davidson says. ‘‘You’d be surprised how many people tell us that that’s the first time anyone has said that to them.’’
 
Joelene and Rob, who had no idea what the diagnosis meant, learnt that their fair-haired baby was the one-in-700 born with an extra chromosome, which causes problems with the way the brain and body develops. They discovered that Down syndrome is the most common identifiable cause of an intellectual disability and related to the condition are a number of medical issues including heart defects, hearing and visual problems, epilepsy, hypothyroidism and gastrointestinal malformations.
 
While Dakota struggled to feed because of low muscle tone – this is common among babies born with Down syndrome and is known as hyoptonia – she did not appear to have any other major health problems, which provided some solace during the confusing and distressing 11 days that mother and daughter spent in hospital.
 
‘‘I remember it like it was yesterday,’’ Rob, 35, says. ‘‘Seeing what Jo went through [with the birth] and then dealing with the fact our baby had a disability, it was really hard to take. I remember driving home in the morning, I was so buggered, and I just cried and cried. I was like that for days. It was so surreal.’’
 
A routine scan when Joelene was 12 weeks’ pregnant showed that she had a high chance of having a baby with Down syndrome. But at a follow-up ultrasound four weeks later, none of the other physical markers of Down syndrome were detected. The couple was relieved, believing that their longed-for daughter did not have the genetic condition. Then 21 and with no other health concerns apart from debilitating morning sickness, the young mum-to-be did not think she was in the high-risk category. (In fact, the majority of babies with Down syndrome are born to women under 35: more women in this age group have babies and are not necessarily targeted for prenatal screening.)
 
The couple, who met at a Jehovah’s Witness gathering at the University of Newcastle in 2004, chose not to have more invasive pre-natal testing. Termination was never a consideration: ‘‘It’s our responsibility if we’re going to fall pregnant and we need to deal with whatever follows,’’ Joelene explains.
 
So they put any concerns at the back of their minds and excitedly prepared for Dakota’s arrival.
 
‘‘Finding out we were pregnant was the happiest day of our lives,’’ Joelene says, brightening.
 
‘‘We’d been trying for nine months and just as we decided to stop stressing about it, we got a positive result. We’d been having a few marriage problems and Rob felt that a baby would help.
 
It was such an amazing feeling [being pregnant]. That fixed us.’’
 

Activists are often motivated by a desire to protect that which they hold dear. The reason for Joelene and Rob’s decision to share their story with Weekender is wrapped snugly in pink and white, and sleeping peacefully in the crook of my left arm. Like her boisterous big sister, five-week-old Ruby Jae was born with Down syndrome.
 
The couple was told that their third child – they also have a 14-month-old son named Kayden Jon – had the same condition after Joelene was treated for excessive fluid retention when she was 27 weeks’ pregnant.
 

An ultrasound showed that little Ruby’s bowel had not formed properly, a strong indicator of Down syndrome. This time, Joelene wanted to know for sure so she could be spared the shock that followed Dakota’s arrival. Some of the three litres of amniotic fluid that was drained by medical staff was tested.
 
‘‘I had the procedure on a Tuesday and I rang at lunchtime on Thursday, but the result wasn’t in yet,’’ Joelene calmly recalls. ‘‘And then two hours later I got a call. I could tell straight away from the tone of voice. ‘Hi Joelene’,’’ she says, mimicking the quiet concern of the hospital staff member who had the unenviable task of informing her that her baby had Down’s. Having two children in one family with the condition is rare; the chance of a couple who have one child with Down syndrome conceiving another baby with the condition is about 1 percent.
 
‘‘I rang Rob and I was howling like an animal. How could this happen? Physically, how? We went through every emotion – crying, anger, I was swearing my head off, confusion.’’
 
Adds Rob: ‘‘Denial. I think we were waiting for that call to say, ‘Sorry, we mixed up your result with someone else’s’. We were delirious, then we were laughing and making jokes, stupid jokes.’’
 
Each year the couple proudly participates in the Buddy Walk, which is held in Newcastle in October during Down Syndrome Awareness Week, and encourages families to invite their supporters.
 
The Rutherfords had 30 people walking with them last time.
 
‘‘I joked that now we’d have two reasons to do the Buddy Walk,’’ Joelene half laughs. ‘‘After we let it sink in, we just went, ‘What can you do?’ That’s where we’re at now. This is our life and we wouldn’t change it.’’
 

Cradling dark-haired Ruby, who was born four weeks early and required surgery soon after to fix her bowel obstruction, is no different to holding any sweet-smelling newborn. Her nappy pops and bubbles with wind, she purses her lips and starts agitating for a feed with the occasional small cry.
 
In a world obsessed by image, it’s hard not to feel a pang when taking in her delicate but distinctive facial features, which, for people with Down syndrome, act like a neon sign attracting judgment, prejudice and misunderstanding.
 
Joelene and Rob deflect lingering stares and insensitive comments with their deep love for each other and their children. They don’t want pity; they would like the rest of us to question our assumptions about Down syndrome.
 
‘‘When you hear the word ‘disability’ you just think of so many negative things,’’ Rob says. ‘‘I guess that’s what I’ve taken in from the whole experience; having a child with a disability, I don’t really see what Dakota can’t do. She has so much ability.’’
 
‘‘I don’t even like using the word disability,’’ Joelene adds. ‘‘I prefer special needs.’’
 
Dakota attends day care and will start kindergarten at Hamilton South Public School next year. She enjoys her books and watching TV and is obsessed with Garfield, Madagascar and Justine Clarke; she’s moved past her Dora the Explorer phase. ‘‘Little Miss Sunshine’’, as her parents call her, loves nursing her little sister and playing with Kayden. Her moods shift like those of any five-year-old – from smiley to stubborn and back again. She has characteristics more in common with family members than other children with Down’s.
 
‘‘One of the myths you have to deal with as a parent is that children with Down syndrome are ‘always happy, always loving’, whereas people with Down syndrome are like everyone else; they experience a range of emotions,’’ says Judy Davidson, whose 15-year-old daughter Georgia has Down’s. ‘‘They’ll come with the skills and passions that are part of their family and who they are, not their condition.
 
‘‘A lot of parents can be fed information when they’re holding their tiny newborn baby, ‘Well, don’t expect them to do this, don’t expect them to do that’, whereas what we’re wanting for our babies is what other parents want for their baby – the opportunity to watch them grow and develop their own passions and strengths and to support and encourage them.’’
 
Joelene is understandably nervous about Dakota starting school. Like most mothers, she fears the barbs of schoolyard bullies.
 
She admits, mortified, that in high school she was one of the teens who knew the words that would ‘‘set off’’ students with intellectual disabilities.
 
‘‘Every parent wants their child to be smart and able to cope with life,’’ Joelene says. ‘‘To know that Dakota’s getting to the point where she’s going to have to start defending herself, and to have that intellectual limitation is devastating for me. How is she going to relay to us that she’s had a bad day?’’
 
The couple is also concerned about the impact that having two siblings with special needs will have on Kayden. So much of their attention and energy is directed at the girls.
 
It is a demanding juggling act that has thankfully become a little easier since Joelene sought assistance earlier this year when it was all getting too much.
 
‘‘We decided to do so much on our own,’’ she says, ‘‘but it got to the point where I needed support. I’ve learnt that it’s OK if you’re having trouble coping, you don’t have to be brave all the time.’’
 
Respite care was arranged for Dakota one day a week and Joelene’s mother, Helen, who lives nearby, assists whenever she can.
 
‘‘There are plenty of people with kids, not just with Down’s but with other issues, and I don’t want people to think they have to do it all on their own,’’ Joelene says.
 
‘‘We’re still going to have challenges – everyone does – but there is plenty of help out there. Don’t be ashamed of asking.’’
 
The only time during the interview that Joelene becomes anxious is when I ask how long they’ve lived in their Cardiff home.
 
‘‘We’ve actually got to find somewhere else to live because the owners have sold it,’’ she says.
 
The couple has been searching across Newcastle – no easy feat when Rob is working six days a week and Joelene has to arrange care for the two older children – without luck.
 
‘‘We’ve applied for five houses, but we don’t even get a look-in,’’ Joelene says with a hint of frustration and fear. ‘‘We’re desperate to find somewhere.’’
 
Joelene had been to two open houses the previous weekend but was overwhelmed by the number of other families submitting applications. ‘‘Everyone’s in the same situation so I know how hard it is,’’ she says, charitably. ‘‘We’ll be right,’’ Rob counters. ‘‘I’m sure something will come along.’’
 

Four weeks after Dakota was born, Joelene returned to her full-time job in administration and Rob, then a labourer with a back injury, became a stay-at-home dad.
 
It is clear when talking to the couple that their daughter transformed Rob for the better. He mentions in passing a serious car accident, depression and family issues; it’s not difficult to read between the lines.
 
‘‘I had a lot of anger,’’ he says now. ‘‘I was popping pills every day [for pain relief]. Thanks to Jo and Dakota, I sorted myself out. I had a job to do with Dakota and it’s made us very strong.’’
 
Once the couple found out they were expecting a third child, Rob knew it was time to retrain and rejoin the workforce. At his local employment office earlier this year, he noticed a flyer for a week-long indigenous empowerment program founded in Newcastle by Brian Dowd, who operates Black on Track, a respected indigenous employment and development program that is being implemented nationally.
 
Rob had been toying with the idea of doing youth work and embraced the opportunity to resolve lingering emotional issues.
 
He now proudly works for Dowd.
 
‘‘He’s a completely different person to who I married,’’ Joelene says, with respect and admiration. ‘‘This is a brand new Rob. I had to get to know him all over again, it was very emotional for me. He’s so positive now.’’
 
How have the past five years of dramatic peaks and troughs changed her?
 
‘‘I’m more content in myself. I haven’t fallen in a heap, I’ve managed to get on with life. I’ve succeeded so far; I hope I continue to be a good mum and carer.
 
‘‘It’s the hardest job in the world and you’re going to have your bad days and feel like you’re not coping, but you need to know that you’re doing the best you can.’’
 
Joelene and Rob describe how Dakota – and now little Ruby – have opened their minds.
 
‘‘You’re proud to say you’ve got a child with Down syndrome,’’ Joelene says. ‘‘I am,’’ Rob adds, smiling. ‘‘I wouldn’t change anything."