Birth Defects Awareness and Advocacy Family Toolkit

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1 IN EVERY 33 BABIES IS BORN WITH

A BIRTH DEFECT.

©2012 The Children’s Hospital of Philadelphia. All Rights Reserved.

N. Scott Adzick, M.D., M.M.M.Surgeon-in-ChiefDirector

Lori J. Howell, R.N., M.S.Executive Director

Mark P. Johnson, M.D. Director of Obstetric Services

LETTER

Dear Friend,

For more than 15 years, the Center for Fetal Diagnosis and Treatment (CFDT) has pioneered fetal medicine to offer hope to babies yet to be born. Thousands of families from across the country and beyond have come to the Center to access these lifesaving therapies. Many children have been treated for life-threatening conditions while still in the womb or immediately after birth, and more than 1,000 have been delivered in the Garbose Family Special Delivery Unit since it opened in 2008.

But we are driven to do more. Each year, nearly 150,000 babies are born in the United States with birth defects, many with conditions so rare most parents and even some clinicians have never heard of them. Too often, these families aren’t made aware of the treatments available at a place like our Center, and they are left feeling overwhelmed, with few options.

Spreading the word about these conditions and the treatment options available is vital, and you can help. Sharing your personal story with local media outlets or on social media can build awareness and offer hope to newly diagnosed families, showing them that they are not alone. Writing your elected officials can help build awareness of birth defects and advocate for research into improved understanding, diagnosis and treatment. And making charitable gifts and raising money for the CFDT provides vital resources to advance pioneering research and enhance clinical care to give even greater help and hope to families.

The information in this toolkit will help get you started.

Thank you for joining with us in this cause. Together, we can offer hope to countless families around the world.

Sincerely,

About 150,000 babies in the United States are born each year with a birth defect. There are thousands of different birth defects. Many are so rare that most people — even some physicians — know little about them. And while there has been a lot of research to advance our knowledge, the causes of some birth defects are still unknown.

As a family member or friend of a child with a birth defect you have a unique perspective and a distinctive voice. Sharing your personal experience is the most powerful advocacy tool that exists. By sharing your story, you can help us in our mission to make the public and our leaders more aware of the struggles these kids and their families face — and the need for increased research to help improve the lives of children like them in the future.

Engaging and educating the public is an essential step toward improving access to care, increasing funding for scientific research and educational programs, and passing laws that will allow for crucial early diagnosis and treatment.

Help us get the message out. Become an advocate today!



A BIRTH DEFECT.


• Share your story.

• Contact your local media — TV, radio or newspaper.

• Use social media networks like Facebook and Twitter to educate friends and family.

• Use your blog as a platform to tell personal stories and share resources and information about birth defects.

• Volunteer.

• Advocate for laws and funding at the local, state or federal level.

• Donate to the CFDT or fundraise on our behalf.

Ways you can get involved and become an advocate for children with birth defects:

See advocacy tips on the following pages. Every little bit you do to spread the word will inspire others to do the same, and together we can make a real difference. Thank you.

INTRO



A BIRTH DEFECT.

Congenital Cystic Adenomatoid Malformation (CCAM) – A cystic or solid lung tumor. The incidence of CCAM is approximately one in 10,000 pregnancies.

Congenital Diaphragmatic Hernia (CDH) – A condition in which a hole in the diaphragm allows abdominal organs to move into the chest and restrict lung development. It occurs in about one in every 2,500 live births.

Congenital Heart Defects (CHD) – Abnormalities in the heart’s structure. The most common birth defects, affecting approximately 40,000 births in the U.S. each year. Approximately one in every 120 babies is born each year with some type of congenital heart defect.

Conjoined Twins – Two babies born physically connected to each other. The condition occurs once in every 50,000 to 60,000 births.

Gastroschisis – A condition in which the intestine and other abdominal organs protrude through a hole in the abdominal wall and spill out into the amniotic fluid around the fetus. It occurs in approximately one in 5,000 live births.

Lower Urinary Tract Obstructions (LUTO) – Conditions in which there is a partial or complete obstruction of the urethra which restricts or prevents the passage of urine. LUTO occurs in one in 5,000 to 7,000 births, most commonly in male fetuses.

Omphalocele – A defect in which the abdominal organs protrude into the base of the umbilical cord. Occurs in approximately one in every 5,000 to 10,000 births.

Sacrococcygeal Teratoma (SCT) – A tumor located at the base of the tailbone (coccyx) of the newborn. The most common tumor of the newborn, SCT occurs in one of every 35,000 to 40,000 live births, more commonly in females.

Spina Bifida – A birth defect in which an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back. It occurs in 3.4 per 10,000 live births in the United States and is the most common central nervous system birth defect. Between 1,400 and 1,500 babies are born with spina bifida in the U.S. each year.

Twin Reversed Arterial Perfusion Sequence (TRAP) – A condition in which one twin receives all of its blood supply from the normal or so-called pump twin. It occurs in approximately 1 percent of monochorionic twin pregnancies, with an incidence of one in 35,000 births.

Twin-Twin Transfusion Syndrome (TTTS) – A condition in which the blood passes unequally between identical twins that share a placenta (monochorionic). It occurs in about 15 percent of monochorionic pregnancies.

Know the facts about birth defects and share them with others.Birth defects have a serious, adverse effect on health, development or functional ability and account for more than one in every five infant deaths. Babies with birth defects have a greater chance of illness and long-term disability than babies without birth defects. Many defects can be diagnosed and, in some cases, treated before birth.

There are thousands of different birth defects. Below are fast facts on a few of the most commonly treated birth defects at the Center for Fetal Diagnosis and Treatment.

For more detailed information on these birth defects, or information about additional birth defects, visit fetalsurgery.chop.edu.Sources: March of Dimes, Centers for Disease Control and Prevention


CONDITIONS FACTSHEET

• The largest, most comprehensive fetal diagnosis and treatment center in the world

• The only fetal center offering comprehensive care in one location, from prenatal diagnosis through delivery and postnatal care

• One of only a few centers in the world to offer open fetal surgery for life-threatening conditions

• Since 1995, our Center has cared for more than 12,000 expectant parents from all 50 states and more than 50 countries.

• Led by a multidisciplinary team of pioneers in fetal diagnosis, fetal surgery and fetal medicine who constantly work to refine and advance the techniques used to treat fetal conditions

• Our specialized Fetal Heart Program diagnoses fetal heart defects early in pregnancy and coordinates care. After birth, babies are treated in the Hospital’s Cardiac Center, one of the world’s top pediatric heart programs.

• Home to the Garbose Family Special Delivery Unit (SDU), the world’s first birth unit for women carrying babies with diagnosed birth defects, keeping mother and child in the same space after birth. More than 1,000 babies with the full range of fetal diagnoses have been delivered in the SDU since it opened in 2008.

• Babies who require care after birth receive advanced care in CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit, ranked No. 1 in the nation for newborn care.

Know the facts about the Center for Fetal Diagnosis and Treatment at The Children’s Hospital of Philadelphia and share them with others.



A BIRTH DEFECT.


CFDT FACTSHEET

Your unique perspective is a powerful thing. Sharing your story can help raise awareness of birth defects and, in turn, impact other families in your local community.

The best way to get your voice heard is by “pitching” your local media outlets. A pitch is a letter to a newspaper editor or writer that sells your story idea and convinces them to call you for an interview. It should tease your story, including the most important information but not every detail.

Newspapers, magazines, and radio and TV stations rely on pitches from people like you to guide the issues they cover. They receive many pitches every week. Below are a few tips to ensure yours stands out from the crowd.

1. Identify local media outlets that might be interested in covering your story.

2. Look on the media outlet’s website for the reporter who would most likely cover the topic you’re pitching, e.g., health/medicine reporter. This should be your main point of contact. You can also call the news desk and ask to speak to an editorial assistant, who should be able to connect you to the best person to cover your story.

3. Write your pitch. • Keep it short. • Highlight the local angle. How does a national issue affect your local community? • Put a face on your story. Describe your family and its connection to the community as you relay the experience you’ve gone through. • Lead with emotion, follow with facts. Use the information shared in this toolkit. • Give your story an element of newsworthiness and timeliness. Why now? It could be a related awareness day/month or your child’s birthday. • Explain how your story is different from other topics covered in the past. • So much in the news can be negative. The media is always looking for positive, human-interest stories that are uplifting. Position your story and the Center as part of the solution.

4. Send your pitch to the appropriate person, along with pictures.

5. If your pitch is tied to an event, be sure to give the media lead time (a few weeks, if possible) to cover it, and let them know that photo opportunities will be available.

6. Include your contact information and let the reporter know they can call you any time with additional questions. Also be sure to mention that the Center’s experts are available for interviews, as well.

7. Thank them for their time.

Our Center has a dedicated PR specialist who is happy to help you share your story and connect reporters with our experts.

For more information, contact Ashley Moore at 267-426-6071 or [email protected].



A BIRTH DEFECT.


PITCHING MEDIA

Persuade others . Write an “op-ed” for your local newspaper.Newspapers often publish opinion pieces (called op-eds) by people in their community who are passionate about a cause. It can be a very powerful and effective tool to raise awareness and shape public opinion. Op-eds are read by fellow citizens and even elected officials as a way to stay informed on the issues important to their constituents.

If your life has been affected by a birth defect, you have a unique story to share with the world. By writing about how a birth defect has affected your family, you can help raise awareness of birth defects, add a much needed perspective to the growing healthcare debate, and offer hope to families going through a similar experience.

Keep it short: 500 to 700 words is a good range to aim for.

Keep it simple: Use simple words and short sentences, and make your main point up front, in the very first paragraph. Avoid jargon and overly technical language.

Tell your story: Personal stories are powerful and can help bring about real change. If you or someone you know has been affected by a birth defect, write about your experience.

Add a call to action: Tell readers what actions you want them to take. For example: “Write your legislator to show your support for increased research into birth defects.”

Use statistics: Personalize your letter with facts and statistics about birth defects in general, as well as specific statistics related to the particular birth defect that affected your family.

Proofread it first: Proofread your op-ed carefully before submitting it to the newspaper. Ask a friend or family member to proofread it, too.

Include contact information: Provide your name, email address and phone number.

Follow submission guidelines: Op-ed submission guidelines can usually be found on the op-ed page of your local newspaper or on the paper’s website.

Here are some tips for writing an op-ed:



A BIRTH DEFECT.


An alternative or in addition to writing an op-ed:

Reach out to local media and offer yourself as a resource if they have any questions about the particular birth defect your family experienced.

OpEd

Advocate online . Tell the story of your child’s diagnosis and the care you received at CHOP on social networking sites like Twitter, Facebook and Google+.If your life has been affected by a birth defect, you have a unique perspective and passion to share with the world. Social media is a great, easy way to connect with like-minded advocates and spread the word among people who might not otherwise know that the birth defect exists.

• Retweet us. Follow us on Twitter (@FetalExperts) and when we tweet something you find interesting, retweet it.

• ‘Like’ us. Check out our Facebook page (facebook.com/TheCenterforFetalDiagnosisandTreatmentatCHOP) and ‘Like’ us to join our online community. Say ‘hi’ or post a photo while you’re there.

• Update your status. Let your friends on Facebook know about the Center for Fetal Diagnosis and Treatment by directing them to our Facebook page or website, or by sharing one of our recent posts.

• Share our videos. Subscribe to our YouTube channel (youtube.com/ChildrensHospPhila) and check out our videos. You can ‘Like,’ share or comment on a video that strikes you.

Ways you can help:



A BIRTH DEFECT.


Here are some additional tips for online advocacy:

Tell your story: Personal stories are powerful and can help bring about real change. If you or someone you know has been affected by a birth defect, post about your experience.

Keep it short: Facebook status updates (without an attachment or action link) can be no more than 420 characters. Posts with an attachment or action link can contain up to 10,000 characters. Twitter’s max is 140 characters.

Keep it simple: Use simple words and short sentences, and avoid jargon and overly technical language.

Make a call to action, when possible: Encourage followers to take specific actions. For example: “Write your legislator to show your support for increased research into birth defects.”

Share facts: Post facts and statistics about birth defects in general, as well as specific statistics related to the particular birth defect that affected your family.

Share news and updates: Post relevant news stories about birth defects, community resources or updates from the CFDT.

Encourage your friends and followers to learn more about birth defects and share what they know with their friends.

Fuel the discussion: After you post a link, comment on it to explain why it is important and spark a discussion.

Don’t just post once: Make CFDT news and information about birth defects a consistent part of your online presence.

ONLINE

Blog to spread the word . Share the story of your child’s medical journey, educate others, and link to CFDT videos and resources.As a family that has experienced the diagnosis and treatment of a birth defect, you know how life-changing accurate information and expert treatment can be. You can share that insight with others by telling your story and connecting them to the Center for Fetal Diagnosis and Treatment.

Blogs are a great way to do this. If you have a blog, raise awareness of birth defects by writing about your own experience and sharing CFDT educational videos, which you can find on YouTube or on fetalsurgery.chop.edu. If you don’t already have a blog, it’s easy to start one using a free blog-hosting service like Blogger or WordPress.

You are a source of inspiration and information to others. Sharing your story can help those going through a similar experience get an idea of the challenges that might await them, give them the courage to know they’ll make it through, or give them insight into a treatment option they didn’t know was available before.

Share the details of your experience with a birth defect and your life afterward.



A BIRTH DEFECT.


Blog about one of our videos.

Too often, families receive limited or inaccurate information about their child’s birth defect. The CFDT educational videos are created by the world’s most experienced fetal diagnosis and treatment team, ensuring the utmost accuracy and a comprehensive discussion of the full array of treatment options available.

If one of our videos on YouTube interests you, don’t just leave a comment on the YouTube page; write a blog post that embeds our video in it. Sharing that video on your blog helps spread accurate information — and hope — to other families around the world.

BLOG

Advocate . Share your story with elected officials and the public to create change.Have you ever wondered what you can do to help protect the health and safety of children with birth defects in your community and the wider world? Children have no vote. But they do have a voice — yours.

The following websites can help you identify your legislators:• Pennsylvania: legis.state.pa.us• New Jersey: njleg.state.nj.us• Delaware: legis.delaware.gov

To learn the names of your two U.S. Senators and one U.S. Representative, go to www.senate.gov, and house.gov. Use the search functions “Find Your Senators” and “Find Your Representative.”

Legislative Advocacy: Advocacy means “to speak up.” Legislative advocacy is speaking up for another or championing a cause in order to change public policy. As citizens, we have the ability to change laws, including those that affect children. We can do this by voicing our concerns to our legislators — writing letters, making phone calls and/or speaking in front of committees.

Community Advocacy: This type of advocacy draws a community’s attention to important issues at a local level (such as neighborhoods, schools and healthcare facilities). Community advocacy works by gaining support from our fellow citizens and elected representatives to bring about change.

Advocacy can improve the lives of children with birth defects by:

What is advocacy?

• Serving as the voice of children as decisions are made that affect their health and welfare• Educating the public and elected officials about issues important to children with birth defects and their families• Helping policymakers develop viable solutions to problems

How to find your legislator



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Page 1 of 2

ADVOCATE PG 1

When writing to a U.S. senator or state senator

The Honorable Mary/John Doe (mailing address here)

Dear Senator Doe:

When writing to a governor

The Honorable Mary/John Doe(mailing address here)

Dear Governor Doe:

When writing to a U.S. representativeor state representative/assemblyman

The Honorable Mary/John Doe (mailing address here)

Dear Ms./Mr. Doe:

When contacting a legislator by letter, fax or email:

• State your position clearly in the first paragraph by asking your legislator to do something specific, such as sponsoring a bill or voting for or against a measure.• Personalize your communication by explaining, as clearly and passionately as you can, why this matters to you. • Write briefly and refer to bills by name and number. • Sign your letter with your name, home address and phone number so that your legislator knows if you are a constituent and can contact you. • Send a thank-you note.

When contacting legislators by phone:

• Identify yourself by name and home address.• Identify the bill you wish to talk about, by name and number if possible. • Briefly state your position and how you wish your legislator to vote. • Ask for your legislator’s stance on the bill or issue and ask for a commitment to vote for your position.• If your legislator needs additional information, gather supporting facts and get them to your legislator as soon as possible. • If the legislator is away from the office, leave a message or talk to an aide.

Address your letter as follows:

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ADVOCATE PG 2

Support . Philanthropic support powers every lifesaving treatment and breakthrough discovery.Charitable gifts, large and small, make possible every lifesaving treatment, every breakthrough discovery at the Center for Fetal Diagnosis and Treatment, ensuring the best outcome for both patients: mother and baby. Donations help improve and expand clinical care and provide compassionate care to families. Be our partner in making the extraordinary advances that will save the lives of countless children.

Children’s Hospital appreciates the generosity and loyalty of its donors with exclusive recognition societies at every giving level.

giving.chop.edu/fetalVisit us at:

Join a Giving Society:



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Children’s Hospital welcomes organizational and corporate sponsorships for community outreach and fundraising events.

Partner with us:

It’s simple to customize a tribute page for an individual, occasion or event with your own words and images and share it with friends and family to raise funds for Children’s Hospital. For more information, visit giftofchildhood.org/fundraisingpages.

Create a fundraising page:

Participating in a race? Then consider joining TEAM CHOP and raising money on your way to the finish line to help us ensure that every child has the opportunity for a healthy childhood. For more information, visit giftofchildhood.org/teamchop.

Plan an event:

The Children’s Hospital of Philadelphia Foundation Lockbox #1352 P.O. Box 8500 Philadelphia, PA 19178-1352

Mail in a donation:

Make a gift: A variety of giving opportunities are available, and 100 percent of every contribution is designated based on donor’s wishes. Gifts can be made broadly to the Center for Fetal Diagnosis and Treatment or in a targeted way for a specific research project, family care need, etc.

Whether you’re interested in doing something in your community or at your school, organizing an event is a wonderful way to touch the lives of kids who rely on Children’s Hospital for care, cures and hope. For more information, visit giftofchildhood.org/planevent.

Join TEAM CHOP:

Our Center has a dedicated director of development who is happy to help you make an impact through a donation or raising money to advance the research and clinical care of the CFDT. For more information,

contact Becky Rohtbart at 267-426-6529 or [email protected].

Documents

Birth Defects Awareness and Advocacy Family Toolkit