Sarah Palin's newborn puts Down syndrome in spotlight

As prenatal genetic testing has become more widespread, disabilities rights activists have grown concerned that children like 4-month-old Trig Palin will become an increasing rarity. Trig is the son of presumptive Republican vice presidential candidate Alaska Gov. Sarah Palin, and he has Down syndrome, a chromosomal abnormality that affects about one in 800 babies born alive in the United States each year. A 1999 study found that 90% of women  who learn their baby has the genetic abnormality chose to end the pregnancy.

But parents of children with Down syndrome have grown increasingly vocal about their choice to give birth to their babies, and to share the challenges and rewards of raising a child with a disability. See, for example, Family Village. With one in every 33 children born in the United States having some birth defect causing lifelong disability, a community also has sprung up to share information on the wide range of federally mandated educational programs and social services available to families.

Pediatric practitioners see it as particularly important that parents like Sarah and Todd Palin seek out and secure services quickly for their children with disabilities, since early intervention can be crucial to improving the function of those with Down syndrome. One study probing the effectiveness of early intervention found that a two-month delay in treatment was associated with lower gross motor, fine motor, language and social outcomes by the time the baby reached 18 months. Another study showed that newborns with Down syndrome who received immediate language intervention had better language development than those who didn't get it until 3 months or 6 months of age.

Palin's decision to give birth to her son Trig already has made her a popular choice among anti-abortion activists. She now becomes a highly visible parent of a disabled child. Her turn in the spotlight already has autism activists questioning whether the Palins will have Trig vaccinated.  That question comes out of evidence that having Down syndrome may put an infant at greater risk of autism, and out of lingering but unproven fears that the preservatives in vaccines may cause autism. (See:  How will Sarah Palin vaccinate her son Trig?)

More links to sites aimed at parents of children with disabilities are:

National Assn. for Down Syndrome

Family Voices

National Parent Network on Disabilities (NPND)

National Information Center for Children and Youth with Disabilities (NICHCY)

T.A. Alliance for Parents (PACER Center)

-- Melissa Healy 

Photo: Alaska Gov. Sarah Palin with husband Todd and son Trig in April. Photo credit: Al Grillo / Associated Press   

Comments

[debbie]

This woman needs to be a mom to her newborn. Not vp.

[johanB]

It turns indeed the wrong spotlight on down syndrome. I believe it to be an almost criminal act that when you find out (which is real easy these days) your baby will have down syndrome to go ahead and have the baby anyway. This is not only incredibly selfish, but ultimately it will be the state and taxpayers who will have to take car of that baby. This child will have a miserable and unproductive life at best and no religion in the world can make that any better. In this case pro-life is not much different than being pro torture.

[Kurt]

We are parents of a 16 year old DS boy who we adopted when he was 6 months. It's been a lot of work, but the joy he brings to our home is immeasurable. Nothing like having one of these kids give a person some perspective on what really matters in life!

[Gail Williamson]

The Down Syndrome Association of Los Angeles (DSALA) has welcomed 111 new babies with Down syndrome in 2007 and 2008. We offer support to individuals with Down syndrome of all ages, and their families. Our office is in Glendale and we can be reached through our website at dsala.org. Please contact us if you have a loved one with Down syndrome and would like to be a part of our family. Also, watch for our Buddy Walk on November 2, where over 2000 people will come out in support of individuals wtih Down syndrome.

[Tracy]

To Johan B,

How dare you assume it is "better" to abort a baby with any disability than to give birth? Are you aware that there are MANY babies who grow to be adults who are self-supporting??? People with disabilities can be contributing members of society and, of course, some need more supports than others. How can you assume that this child will grow up to be miserable? Then you go on to talk about religion. PLEASE!!! I suggest you quit being a hypocrit and perhaps look at spending some time volunteering with people with disabilities. They have so much to offer.

[Patricia]

Unfortunately, we don't have all the facts yet, but I do hope the media looks into this more.

At the convention tonight, Sarah Palin was described as smart, tough and a trooper.

Why then, would she put herself and her child at risk, by boarding an airplane, while in labor, during a high risk pregancy, to go home and deliver her child?
Was her plane fully equipped with a hospital, and medical team to deliver this child safely?

She had just finished giving a speech at a governors' conference. Was there a hospital nearby?

If her plane was not a hospital, fully staffed with medical teams to deal with high risk pregancies and deliveries, then it calls her judgment into question.

She knew well in advance her child had Down Syndrome.

Any doctor will warn their patients not to fly during late term pregnancy, let alone fly during a high risk pregnancy with an older mother.

I gave birth in two high risk pregnacies, and there were approximately 5 doctors and multiple other support staff in the hospital operating room.

While I appreciate Mrs. Palin's very "tough" speech at the convention, and her monetary accomplishments for her state, I have to wonder about her personal judgment, possibly endangering herself and her unborn child, logging some air miles, while in labor, to deliver her baby.

P Wyman

[Natalie Carter]

To not take the precautionary measures of becoming pregnant at the age of 43 and then giving birth to a child with down syndrome is irresponsible.

[Evan]

I believe Johan B is way out of line. It is pretty obvious that he is pro-choice or really pro-death. America's Holocaust is abortion. Over 50 million babies have been murdered since the Roe v. Wade decision was handed down in 1973. Wake-up America, Judgment day is coming!!

[Mary]

Why did Sarah Palin choose to have an amniocentesis test done in the first place? It is not required, and some believe it poses unnecessary risk to the pregnancy. If a person has no intention of choosing to terminate a pregnancy that indicates a chance of an abnormality, why have the test done at all regardless of the mother's age or family genetic history?
So she can hold up the banner of pro-life because she knew the possibility existed, but chose to deliver anyway? Anyone in their 40's knows there's an increased chance of birth defects.
For people with disabilities and all Americans, we don't need leaders who are tokens....we need world class decision makers.

[betsy]

JohanB, you obviously don't know anyone with Down Syndrome if you think that the child will have a miserable and unproductive life at best.

[Linda Peeples]

I have a 30 year old son with Down's Syndrome. I am really relieved that I never had to make a choice 30 yrs. I have been blessed with one of the finest people that I have ever known. I have had 3 other children and each one of them have been a joy in my life but John my son with Down's Syndrome has enriched our family beyond anything I could have imagined! Someone said to me 30 yrs ago, "a down's baby may seem a disappointment at birth but all children at some point in their lives will disappoint their parents at some level. Fortunately, Down's children never disappoint again. They may be slightly different but they are the purest form of life and goodness. We should all be so lucky. JohanB is the most pitiful form of lile. How sad to be blind to the hidden joys in life.

[andy W]

I am glad to add my concern for Palin's decision to run for VP in the face of being a parent of a DS infant. I am a health care provider, previously in pediatrics,now in geriatrics and I love to care for people who need my care. That said, how can Palin do this incredible task justice and I mean both running for VP AND mothering and attaching to her infant. As a working mother whose TWO children are now grown, I know the importance of being there for an infant. I was there during that first year and it was not economically easy but the love I hold for my children, both of whom were very ;much planned and wanted,is something you cannot take away from me in my advancing years. I had so few of the technical diagnostics that you have today and I had my children before Roe vs Wade. But family planning is not just about abortion, in fact Margaret Sanger spent her whole life searching for birth control techniques which culminated with the Pill coming into play before she died in 1966. She was driven by her distaste for abortion which was practiced freely (and unsafely for women) prior to her birth. We can thank her for the Pill, at least, which has freed women from many unwanted pregnancies . So Pallin's decision to have her baby was her CHOICE and I would be happy to help her care for him. However, that choice should NEVER be mandated for all child-bearing women today. There is a strange dichotomy here with the Republic Party. I have heard over and over about gov't regulation as being a liberal mandate and yet they would mandate motherhood for all at a time when our problems are the result of overpopulation and in direct contrast to their "gov't regulation" phobia. Thank you for listening. I am only one of millions of women who have thoughts concerning these issues. And God bless little Trig and his Mom!!

[Jose]

I am the parent of a 9 year old child with down syndrome. At first, I'll admit that we were quite frightened of how we would deal with the child, his affect on the rest of our lives and so on.. Nine years later, I can report that while there is some hard work involved, there is plenty of satisfaction involved in raising this child. We actually feel quite privileged to have him in our home, and he adds immeasurably to the spirit of giving and of joy in the house.

With the amount of effort required to raise these children, I don't know how somebody here could call a parent who has such a child selfish?!

The mindset of some people these days is infathomable.
They probably believe in killing off the elderly as well, because they are a burden to the taxpayers(sic).

[Jose]

A short note. Some doctors do an amniocentesis as a matter of course.
Secondly, it is important to remember that these tests are not always accurate.
My sister's baby was supposedly going to have down syndrome, and the child was actually born without down syndrome.
Imagine her chagrin if she would have found that out after an abortion.

[geri]

I am the mother of three boys, the first of whom is a gifted student in a private school. My second child has Down Syndrome and my third is a typically developing 10 year old boy. My husband and I are always saying how much Michael, our Down Syndrome child, has improved the overall quality of our lives! He is the sunshine of our every day. His positive attitude and ever present smile light up the lives of everyone he comes in contact with! As far as the quality of his life goes....my other two boys are always saying how Michael has the best life! He doesn't know the stresses of excessive homework assignments, SAT scores, peer pressure and everything else that our youth has to deal with. He wakes up with a smile and happily goes off to school each day. When he comes home, he plays basketball with his brothers and friends and then settles in for some playstaion time. He is better at most games than his "normal" brothers. He comes upstairs for dinner and will not let us eat until we thank God for our food. He then says a prayer for the hungry people in the world. This child is the most compassionate human being I have ever had the honor of knowing and I thank God every day that he is my son! I am so sad for the people who wrote negative comments in this blog about Sarah Palin willingly giving birth to a child like my son. Obviously they are lacking peace in their hearts. I will ask my little angel to pray for them tonight. Geri

[CLC]

Bias against people with disabilities is the the last great discrimination. We had prenatal screening--supposed to be a better alternative to amnio. But it didn't catch a non-Down's syndrome chromosomal diagnosis. So we didn't expect anything unusual with our second child's birth. Thank goodness for the www.Chromosome18.org group so we could provide info to our doctors. I'm still claiming my pro-choice support but the child we have is such a delight and joy, I'm very glad that I didn't have to ask myself, "what should I do?"

Why get amnio if you're "pro-life?" To be prepared from birth for possible medical issues and to get that little baby into early intervention. It works!

JohanB, get some love in your world. Geesh.

[phyllis beal]

Does anyone know what services Sarah Palin and her husband have secured for their son. Everytime I have seen the baby he is being carried like a loaf of bread, and he appears almost lifeless. Most babies that age (even those with Down Syndrome) are kicking crying and making noise. They do not even shift his position from arm to shoulder.

[Natalie]

The News last night was letting people comment on Palin. There was this one lady who said," Palin bringing her baby on stage last night was odd". Let me tell you; As a Mother of a special needs child for 15 years. Palin bringing her baby on the stage for the world to see..it shows to me that Palin is PROUD of her baby. I am so sick of the media letting people see and hear what they want them to see. The lady that made the comment and anyone who agrees with her must never have loved a special child. I am proud of this lady, Sarah Palin. Also, We all should remember 9 / 11. I hope whoever becomes president puts the safety of American first.

[Andrea]

Sarah Palin's diplay of her children at the convention could have exposed little Trig to serious infection.
It has been widely observed that pneumonia, other respiratory infections and gastrointestinal infections are more common in individuals with Down's Syndrome, particularly in very young children. The higher rate of carriage of hepatitis B surface antigen in people with Down's Syndrome is also well documented.
Down's Syndrome is explored in this article by the BBC:
http://news.bbc.co.uk/1/hi/health/medical_notes/1254702.stm

Bringing him to the convention may not have been in the child's best interest.

[PaulaK]

To JohannB:

How dare you make such despicable remarks concerning the validity of children born with Down's. I am the younger sister of a brother with Down's. I grew up visiting his school which was a school for the retarded, and can tell you these are the most happy, sweet, loving and pleasant people on the planet. He is now 50 years old and is a blessing and joy to everyone he meets. He see's goodness in everything and is always happy and smiling. He is innocent and judges nobody. You should keep your uneducated opinions to yourself, because there are plenty of us who feel honored and blessed to have one of these special people in our lives.

[2006pavelo]

My wife and I wrote down few thoughts after watching Ms Palin speech last night:

5 month old baby belongs neither in the audience nor on stage, surrounded by loud screaming and flashing lights, at a gathering of thousands.

Trig Palin was born with Down syndrome. According to NADS (National Association for Down Syndrome) “Many children with Down syndrome have health complications beyond the usual childhood illnesses… [they] have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions”.

Perhaps Trig Palin suffers from none of these ailments, but any infant’s high susceptibility to infection might be reason enough for the parents to avoid subjecting him to large crowds. Would it not have been wiser if baby Trig made his appearance in the convention hall via satellite from a hotel room in care of a family member or a baby-sitter?

Trig Palin is obviously a very quiet child. He does not scream or struggle the way other infants his age might have done. Down Syndrome genotype affects a toddler’s response threshold and intensity (1). Because of a muted response to stimuli, infants with Down syndrome can appear less volatile and fearful than other babies, and often exhibit less anxiety upon being separated from their mothers (1). Baby Trig's inability to express the level of discomfort and anxiety he is experiencing seems to have made him an ideal political prop for his parents.

Governor Palin would like us to entrust her with the welfare of all the children in this country. Yet in caring for her own baby, she showed an alarming lack of judgment.

Dr. Pavel Osten and Julia Kuhl

Reference:
(1) Children with Down Syndrome: A Developmental Perspective; Edited by Dante Cicchetti & Marjorie Beeghly; Cambridge University Press

[Melove Prusha]

I have a 5 yr old with Down Syndrome. He can read small words . He can write the same. He is partially deaf, but it has not stopped him. He can even operate the VCR. Microwave and DVD player. He has his own Nintendo DS. He has had non staop therapy since the day he was born. Yes I knew at 4 months along he had Down Syndrome. Thats the Dad his Father left and never came back. It was the happiest day in my pregnancy because I knew God had given this miracle to me and my 18 month old daughter. I too am the mother of % kids. The other 3 lived a cush-cush life of wealth and now do coke and have big parties at their friends. I will never have to worry my baby boy will make the stupid decisions all those NORMAL kids choose to make.

[LScott]

As a Maternal Fetal Medicine specialist - a physician who takes care of high risk pregnancies and provides prenatal diagnosis such as amniocentesis, I take issue with the comments posted here and elsewhere that Gov. Palin "must have considered the option of abortion" if she had an amniocentesis.

While it is true that many parents who feel that abortion is not an option decline invasive testing like amniocentesis, there are also many others who choose to go ahead with it, for a variety of reasons. The primary reason from the patient's point of view is that the small risk of miscarriage (currently believed to be 1//750-1/1600) is worth the advantage of knowing information ahead of time to become prepared. Upon first learning of the diagnosis most, if not all, parents will go through intense grief, and then will come to accept the diagnosis. Prenatal testing allows the patient and her family to deal with their grief before the baby arrives, and then experience joy at the time of the birth, rather than have to deal with the devasting new information at birth, interfering with maternal bonding. It also allows the family gain information regarding the medical and social needs of the child and organize their resources to prepare for those needs ahead of time.

On a purely medical level, it also allows us, the physicians, to orchestrate our care in the best way for the mother and the baby. As obstetricians, we are always balancing the risk to mother vs the risk to the baby. An amniocentesis is only the first of many decisions that women and their physicians have to make that place the mother and baby on different sides of the risk / benefit equation. Interventions that may be very appropriate for a baby without certain abnormalities may not be at all appropriate when the baby has those abnormalities. Likewise, in the immediate neonatal period when time is often of the essence for infants with abnormalities, the foreknowledge of exactly what those abnormalities are and their etiology (ie chromosomal vs random) may make a significant difference in how / when resuscitation or emergency surgery is performed.

I provide nondirectional counseling for all my patients, helping them to come to the decision that is best for them when they are choosing whether to have prenatal testing, however, my professional preference would be for all women at "high risk" for chromosomal abnormalities to have the amniocentesis as the information it provides me helps me to proivde the best possible care to BOTH of my patients - mom and baby.

[Mamie]

As the mother of a 20 year old daughter with Down Syndrome, despite the fact I have been a liberal Democrat all my life, I was moved to tears by Sarah Palin's speech and by her being upfront with Trig, proudly showing him off to the whole world.

Infants with Down's need constant stimulation, to see and hear the world that surrounds them. The last thing they need is to be discreetly tucked away far from prying eyes.

Her choice to give birth to Trig makes her a strong advocate for my daughter as well.

[marie]

QUOTE: "This child will have a miserable and unproductive life at best and no religion in the world can make that any better. In this case pro-life is not much different than being pro torture."

You have got to be kidding. My lovely daughter who also happens to have Down's Syndrome does NOT have a miserable and unproductiove life! Unbelievable!! Would you dare say that about any other disability? Are blind, deaf, diabetic children miserable and tortured? How about the ones with cystic fibrosis? Why is it always open season on people with mental disbilities? Have you ever even met a person with Down's Syndrome? They are people just like everyone else. Some have very happy productive lives and some don't, just like everybody else. My daughter who is almost 40 years old gets just as much pleasure out of life as her brother who was graduated from college summa cum laude this year. What a snob and fool you are to think IQ alone is the sole determinate of the qualtiy of one's life. I think your post almost qualifies as hate speech.