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Apr 09, 2007 08:05am (EST)

Posted by James SooHoo | Comments: (0) | Permalink

WHERE IN THE WORLD ARE SHARE PARTICIPANTS?

Feb 17, 2007 11:24am (EST)

Here's a fun graphic. The below map shows where SHARE participants are located. Each dot represents someone who has logged in at least 50 times. While 91% of our users are located in the United States, SHARE reaches audiences around the world. Waving hello to our friends in Brazil!

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THE ECONOMIC COST OF BIRTH DEFECTS IN THE UNITED STATES

Feb 09, 2007 11:37am (EST)

I came across this the other day with quotes from one of my colleagues...just thought I would share:

Birth Defects Cost U.S. Billions

By Serena Gordon HealthDay Reporter

FRIDAY, Jan. 26 (HealthDay News) -- The initial economic cost of having a baby born with a birth defect is enormous, ranging from several thousand dollars to several hundred thousand dollars per child.

So concludes a study published in the Jan. 19 issue of the U.S. Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report.

Researchers found that cardiovascular, gastrointestinal and musculoskeletal defects quickly run up the highest hospitalization bills.

"This study is a very important slice of the pie in terms of how expensive birth defects are," said Dr. Nancy Green, medical director of the March of Dimes. "It's important in terms of helping to define some of the costs associated with birth defects, and as a way to remind the public that birth defects are fairly common and are very expensive in terms of dollars -- and of heartache." As many as one in 33 babies born in the United States has a birth defect, according to the Agency for Healthcare Research and Quality (AHRQ). Birth defects are believed to generally occur during the first three months of pregnancy, often before a woman is even aware she is expecting.

The exact cause of many birth defects is unknown, but Green said they are presumed to occur as a complex interaction between the genetic predisposition of the fetus and "some sort of broadly defined environmental impact."

These defects can vary significantly in their severity. Some are mild. Others can cause the death of the baby soon after birth. The current study included 2003 hospital data on 35 selected birth defects. The birth defects were chosen based on whether or not the condition could be diagnosed at birth and if it was a permanent condition without intervention.

The conditions responsible for the most in-hospital deaths during the study period were diaphragmatic hernia (protrusion of the stomach through the diaphragm), renal agenesis (absence of one or both kidneys), trisomy 18 (a serious birth defect in which there are three copies of chromosome 18), and several congenital heart defects.

Costs varied widely, depending on the birth defect. Overall, the most expensive birth defect was an obstructive genitourinary defect, which resulted in almost $365 million in hospital charges. This defect, which is a narrowing or an absence of certain urinary tract structures, is fairly common. About 13,000 babies were born with it, according to the study. Individually, the cost to fix this problem is about $28,000.

Surgeries to correct defects of the heart were among the most costly per procedure, often running to more than $100,000 per child.

In all, birth defects lead to more than $2.5 billion a year in hospital costs alone, according to the study.

"It's interesting that someone took a broad look at the costs," said Dr. Dan Polk, a neonatologist with Children's Memorial Hospital in Chicago. But, he said, one problem with this information is that there's not much you can do to change these figures unless more money is invested in research to discover what causes these defects in the first place.

Until doctors understand the origins of specific birth defects, it's difficult to suggest prevention strategies, other than get early prenatal care and follow your doctor's advice for a healthy pregnancy.

"OK, so we know these defects cost money, but how do you prevent the spending of that money? Nothing's known on how to prevent these birth defects. They're there, and it is what it is. It's not a lifestyle issue or a mother's issue," said Polk. "Research defining the underlying causes might allow us to prevent, rather than try to treat, these birth defects."

Green agreed that more research is critical and pointed out that research has already led to the elimination of some birth defects. "In the 1960s, a lot of pregnant women got rubella. If that's acquired for the first time by a pregnant mom in the last trimester, it can cause congenital rubella syndrome. Thanks to standard routine vaccinations, we don't see that anymore," said Green.

Both Green and Polk recommended that all women of childbearing age make sure they get 400 micrograms of folic acid daily, because a deficiency in folic acid can lead to neural tube defects such as spina bifida in babies.

Green also suggested that if you can possibly plan your childbearing to occur before age 35, you can lower your risk of having a child with a birth defect.

"As a woman ages, there's a greater chance of having a pregnancy affected by chromosomal abnormalities," she said. Green also pointed out that the costs of birth defects hardly end with initial hospitalizations. The AHRQ recently released a report on the cost of birth defects and found that the average age of people being treated for birth defects was 17 years old, she said. "While many of these birth defects are treated in infancy, the impact of birth defects can be long-lasting and may extend into adulthood," Green noted.

To connect with parents of birth defects on the site, please join our discussion at Birth Defects, Diseases and Disorders.

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A TRIP TO HOLLAND

Feb 02, 2007 08:37am (EST)

A friend of mine who had two children both born with birth defects and both of whom, sadly, passed away sent this to me years ago. I remember how much it moved me then...so in case you've never read it before...

TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation the day finally arrives. You pack your bags and off you go. The stewardess comes in and says, "Welcome to Holland".

"Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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CONGRESS APPROVES PREEMIE BILL!

Dec 11, 2006 02:37pm (EST)

Message from Dr. Jennifer L. Howse, President of the March of Dimes

Together we made a difference!

Dear Share Your Story Community,

I'm extremely pleased to report two major legislative victories for the March of Dimes, babies, families, and all Americans. Early in the morning on December 9th, Congress approved the PREEMIE Act (S. 707). The bill will now be sent to President Bush for his signature. This bill would not have passed without the hard work of volunteers and staff across the nation who reached out to their Senators and Congressional Representatives through personal visits, telephone calls, letters and emails urging swift approval of this initiative that sets the stage for increased federal support of prematurity related research and education.

Congress also approved a bill to extend temporarily federal support of the State Children's Health Insurance Program (SCHIP), thereby avoiding a funding shortfall projected to impact 17 states, putting over 600,000 infants and children at risk of losing their health insurance.

Your volunteer efforts for the March of Dimes have again proven successful in meeting the health needs of America's infants and children. Let's savor these significant legislative victories and also get ready for next year's agenda -- funding for the PREEMIE Act and long term reauthorization of SCHIP.

The Share Your Story community helped make it happen!

All the best for Happy Holidays,

Dr. Jennifer L. Howse President March of Dimes

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SITE MAINTENANCE

Dec 06, 2006 07:54am (EST)

Hi everyone,

We're shutting the site down for a couple of hours to do some routinely scheduled maintenance. We should, all things going well, be back up later this afternoon. Please check back then.

very best,

James

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IMPORTANT...PREEMIE BILL REQUEST. PLEASE CALL JOE BARTON TODAY!!!!!!

Dec 05, 2006 12:52pm (EST)

House Energy and Commerce Committee Chairman Joe Barton (TX) still refuses to release the PREEMIE Act from his committee for consideration by the full House. The bill has been pending in his Committee for 2 years and was unanimously approved by the Senate in August. Call Chairman Barton today and insist that he put S. 707 on the House floor Wednesday, December 6.

There are only 2-3 days left before Congress adjourns for the year. We must not allow Chairman Barton to sideline the PREEMIE bill. Call Barton now and let him know that it is unacceptable for our elected officials to ignore the needs of America’s babies and their families. Call Chairman Barton today at 202-225-2927 and tell him we will not stop calling until he agrees to release S. 707 for vote by the full House! Do not let his office tell you that you are not a constituent of his district. You are calling him as Chairman and, in that role, he is accountable to every American! Below are points that you can make:

You have been personally affected by preterm birth (briefly explain your story and the impact on your family)

The PREEMIE Act has strong bipartisan support and 96 House cosponsors.

The PREEMIE Act must be passed this year and is desperately needed to stem the growing crisis of preterm birth.

The Centers for Disease Control and Prevention (CDC) reports that more than 500,000 babies are born too soon each year. Since 1981, that number has increased by over 30%.

The National Academy of Sciences (Institute of Medicine) estimates the economic burden of preterm birth in the US was at least $26.2 billion in 2005, or $51,600 per infant born preterm. Approximately half of the cost of health care is borne by employers and families with the remainder billed to Medicaid, SCHIP and other public programs.

Background

The March of Dimes is working with Senators and Representatives from across the nation to enact the "PREEMIE" bill (S.707/H.R.2861), which would create a public-private agenda to accelerate the development of new strategies for preventing preterm birth and for treating babies who are born too soon. The principal bill sponsors are Senators Lamar Alexander (R-TN) and Chris Dodd (D-CT) and Representatives Fred Upton (R-MI) and Anna Eshoo (D-CA). The Senate approved the bill by unanimous consent on August 1, 2006. Currently, PREEMIE is awaiting action by the House of Representatives before it can be signed into law.

For more information, contact the March of Dimes Office of Government Affairs (202) 659-1800.

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PREMATURITY AWARENESS DAY. PLEASE SIGN THE PETITION!

Aug 31, 2006 09:36am (EST)

The idea is simple. Each year half a million babies are born too soon. Each day millions of pages on Google are seen the world over. Join the petition to convince Google that the crisis of premature birth is worthy of the top spot on November 14th!

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BABYTALK MAGAZINE PHOTO SHOOT

Aug 15, 2006 02:44pm (EST)

BABYTALK MAGAZINE PHOTO SHOOT

Babytalk magazine is looking for babies under 6 months of age who were born prematurely to participate in a photo shoot in Manhattan the week of August 21st for possible placement in an upcoming issue. If you're interested, please email a current snapshot of your baby, along with your name, contact information, and the name and birth date of your baby to Nami Ahn, email: nami_ahn@timeinc.com or phone 212-522-6242 for more information. Babytalk is a Time Warner parenting magazine with a circulation of two million.

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WE NEED YOUR HELP!

Aug 10, 2006 11:02am (EST)

Informing the U.S. Congress about the devastating effects that prematurity has on families is a key component of the Prematurity Campaign, which has a goal of decreasing and eventually eliminating premature births.

The “PREEMIE Act” (S.707/H.R. 2861) which would expand research, health education, and health services related to preterm birth. Please contact your Representatives urging them to cosponsor this important piece of legislation. You can contact them in one or more of the following ways: e-mail, letter, phone call, personal meeting.

Please visit the March of Dimes advocacy website for a sample letter and addresses.

Thanks much for your support of the March of Dimes and this legislation!

James

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