CHD Awareness Week: More Facts About CHDs

Did you know that congenital heart defects can greatly affect the finances not only of the families involved, but of everyone? In the United States, hospital costs for people with a heart defect were about $1.4 billion in one year. Families and the government share the burden of these costs, which means that all taxpayers are affected. Other costs due to lost wages or work limitations can affect families and businesses as well.


Did you know that people with congenital heart defects are living longer? As medical care and treatments have advanced, infants with heart defects are living longer and healthier lives. Many now are living into adulthood. About one million adults in the United States are living with a congenital heart defect. It is important for children and adults living with a congenital heart defect to see a heart doctor regularly throughout their lives.


Did you know that some congenital heart defects can be prevented?
The cause of most congenital heart defects is unknown. Some babies have heart defects because of changes in their genes or chromosomes. They also might be caused by a mix of genes and other risk factors. The Centers for Disease Control and Prevention's National Birth Defects Prevention Study has found that women who are obese, have diabetes, or smoke during pregnancy increase their chances of having a baby born with a heart defect. A woman can take some important steps before and during pregnancy to help prevent congenital heart defects. She can work to get to and stay at a healthy weight, control diagnosed diabetes, quit smoking, and take folic acid daily. These actions can reduce the risk of having a baby with a congenital heart defect.

Sources from www.cdc.gov

Melissa Rich from VanityRich.com

CHD Awareness Week: Current Legislation

Two states currently have pulse oximetry laws while several other states have current or previous laws. At the federal level, pulse oximetry has been recommended for addition to the uniform newborn panel. State advocacy work is needed to make sure that every state follows that recommendation.

Mentioning these efforts when writing or speaking to lawmakers is helpful. Also consider attaching copies of the bill language from other states as examples for your legislator. Check the Critical Congenital Heart Disease Screening Map for further information about efforts in each state.

Federal Recommendation

The Secretary’s Advisory Committee on Heritable Diseases in Newborn and Children recommended in October 2010 that pulse oximetry screened for CHD be added to the uniform newborn panel.

In April 2011, Secretary Kathleen Sebelius answered that recommendation and gave the Interagency Coordinating Committee on Newborn and Child Screening 90 days to further review any evidence gaps and develop a plan for implementation.

If Secretary Sebelius recommends pulse ox for CCHD, some states will undoubtedly introduce programs without legislation, such is the case in Indiana, where pulse oximetry screening was funded and the Department of Health is developing a program.

In September, 2011, Secretary Sebelius accepted that recommendation for adoption of pulse oximetry screening to the universal newborn panel. This doesn’t mean that states must start screening, but does set up federal support.

States with Laws

Maryland - Final Bill WordingFiscal Statement

New Jersey - Law

Indiana - As part of House Act 1001, Indiana passed pulse oximetry screening.Pulse oximetry screening is now included in the Indiana code.

The original bill language.

Fiscal statements 1, 2, 3
Indiana Screening Protocols
Indiana FAQ for Professionals

States with Pilot Programs

Minnesota - A pilot program in this state has been under for the past few years, expanding pulse oximetry screening in hospitals.

States with Current Bills

Florida -introduced SB 1052 in December 2011. Track the bill here.

New Hampshire - A bill requiring pulse oximetry screening was introduced in December 2011.

Tennessee - This state introduced bills in the House and Senate.Fiscal Note

Pennsylvania - The James Matthew Mannix Bill was introduced in the State Senate in July 2011.

Missouri - Chloe’s Law was introduced in 2010 and 2011, and also 2012.

West Virginia - HB 4327 was introduced in January 2012.

States with Previous Bills

Nebraska - Bill (Introduced thanks to the advocate work of the Klein family)

Mississippi - Bill

New York - Bill

Source from pulseoxadvocacy.com

CHD Awareness Week: Pulse Oximetry

"What’s needed is a large-scale formal screening program, similar to mammography or colonoscopy to identify at-risk individuals. We already do this to identify newborns with certain hidden but deadly conditions...Recently, researchers have identified a promising new method called pulse oximetry to screen all babies for heart defects."-Darshak Sanghavi, M.D (from Screening Babies for Broken Hearts

What is Newborn Screening with Pulse Oximetry?

Pulse oximetry monitoring uses a light source and sensor to measure oxygen in the blood.

A soft, wrapped sensor is wrapped around the baby’s foot.
Light passing through the foot measures the amount of oxygen in the blood.
The test is quick (3-5 minutes) and painless. Pulse oximetry monitoring should detect most heart defects.

Why is it important to check babies for heart defects?

If undetected, some congenital heart defects can cause serious or even life-threatening problems. Early detection and early treatment lead to better outcomes.

Why check the blood oxygen level with pulse oximetry?
A low oxygen saturation level may indicate the presence of a heart defect.

What are the benefits of the screening?

Babies are less likely to be sent home with unidentified heart problems – some of which can cause acute, emergency situations or even death. If identified in the first 24-48 hours of life, medical teams are available for diagnosis and treatment of CHDs. Critical congenital heart defects, requiring immediate treatment or repair, can be performed before discharge from the hospital.

Will screening find all types of heart defects?

No current screening tool exists to detect CHDs 100 percent of the time. Pulse oximetry screening should detect most heart defects (those associated with a low blood oxygen level). However, some heart detects may not be found on screening (those not associated with a low blood oxygen level).

What will happen if a baby has a low blood oxygen level?

The pulse oximetry test will be done again. If the level is still lower than expected, then an echocardiogram (sonogram of the heart) will be done. A pediatric cardiologist will ‘read’ the echocardiogram to check for the presence of a heart defect. If a CHD is found, the pediatric cardiologist will start collaborating on those findings and working on treatment options. Most heart defects can be corrected or improved with surgery, procedures and/or medications.

What are the other signs and symptoms of heart defects parents can watch for?

• Baby tires easily during feeding (falls asleep before feeding finishes)
• Sweating around the head, especially during feeding
• Fast breathing when at rest or sleeping
• Pale or bluish skin color
• Poor weight gain
• Sleeps a lot, not playful or curious for any length of time
• Puffy face, hands and/or feet
• Often irritable, difficult to console

Congenital Heart Defects (CHDs) are defects that are present at birth and affect the structure or function of the heart or vessels.

• Heart defects are the most common birth defect.
• CHDs occur in approximately one of every 100 births.
• About 40,000 babies with CHD are born in the US each year.
• Heart defects are the leading cause of newborn and infant death.
• Although some babies will be diagnosed before birth or at birth, sometimes the diagnosis is not made until days, weeks, months or even years later.

To view newly published findings from the German multicenter pulse ox study: http://1in100.org/wp-content/uploads/2010/03/Riede-et-al_Germany-Pulse-Ox.pdf

To view the 2009 statement from the American Academy of Pediatrics and the American Heart Association: http://1in100.org/wp-content/uploads/2010/03/peds.PULSE-OX-STATEMENT_2009-1397v1.pdf

Pulse Oximetry Advocacy Temporary Toolkit:

Interactive screening map with current state legislation, legislation pending and hospitals screening for CCHD:

http://www.cchdscreeningmap.com/

I. INITIAL OUTREACH TARGETS

State Departments of Health

Newborn Screening and/or birth defect surveillance divisions

Hospital Medical Staff – contacts

Pediatric Cardiology
Neonatology
Pediatrics
Nursing
Newborn nurseries/Labor & Delivery

Hospital Administration

CEO
Chief Financial Officer
Medical Director
Nursing Executive Leadership
Patient Safety/Patient Care

Resources from 1in100.org

CHD Awareness Week: What is CHD?

A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels.

There are many types of congenital heart defects, ranging from those that pose relatively small threat to the health of the child to those that require immediate surgery. Many types of CHDs and the surgical procedures your physician may recommend to correct the condition can be found in the Children’s Heart Foundation’s parent resource book It’s My Heart – Chapter 2.

Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram. After birth, congenital heart disease is often first detected when the doctor hears an abnormal heart sound or heart murmur when listening to the heart. Depending on the type of murmur, he or she may order further testing such as – Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing. More information about the diagnostic tests that may be used to identify a heart problem or check the status of a previous surgical procedure can be found in It’s My Heart – Chapter 4.

The warning signs of Congenital Heart Disease in infants and children may include a heart murmur or abnormal heart sound, cyanosis (a bluish tint to the skin, fingernails and/or lips), fast breathing, poor feeding, poor weight gain, an inability to exercise and excessive sweating.

Incidence, Morbidity & Mortality
Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the #1 cause of birth defect related deaths.
Congenital heart defects are the leading cause of all infant deaths in the United States.
Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease
Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
There are an estimated 2,000,000 CHD survivors in the United States.
For the first time, more than 50% of the CHD survivors are adults.
10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors
91,000 life years are lost each year in this country due to congenital heart defects.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS
More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact
Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

Resources from The Children Heart Foundation.

CHD Awareness Week

CHD Awareness Week kicks off tomorrow! From February 7-14th, The Mommy Chase will be solely dedicated to CHD Awareness. I encourage all of my readers to spread awareness to educate others on CHD and for those who donate $5 to the Children’s Heart Foundation between tomorrow and the 14th, and if you e-mail me a copy of your receipt, you will be entered in a prize drawing to win a delicious Ultimate Red Velvet Cheesecake from the Cheesecake Factory. All you have to do is donate $5 to the CHF via and e-mail me the receipt at erica@rememberingcarcar.com. Also, starting tomorrow we’re also going to be wearing red for the entire week. Send me a photo of you wearing red and I’ll post it right here on The Mommy Chase.

Support the CHD Community and spread the word!

Now, this is funny

I'm not a narcissist or a beauty queen, but I'd like to think I'm kinda cute. My lovely husband would say “I'm beautiful”, but he hasn't always felt that way....

Recently, while visiting his parents, Monte came across his Middle School yearbook and brought home. Since I also attended the same school as Monte, I was elated to see the yearbook and to reminisce on those innocent and carefree days of my childhood and childhood friends. While looking through the book I noticed that Monte indicated all of the girls he thought were cute by simply writing "cute" by their names. I just knew Monte had "cute" by my name. I instantly went racing through the yearbook looking for my maiden name. I saw my awful picture and noticed that not only was my name spelled wrong, but that the man that took me off the market didn't think I was appealing to eye back in the day. I didn't have "cute" by my name! Shame on him!

Well, that was some 15 years ago, I guess I'll let him pass. He wasn't really my cup of tea back then either.

New Year: Procrastination

“A year from now you may wish you had started today.” - Karen Lamb

I dropped the ball in 2011. I made too many goals and bite off more than I could chew. A lot of it had to do with the fact that I’m a HUGE procrastinator. This year, I’m going to live by Nike’s slogan and just do it. Also, instead of creating a million goals to execute in 12 months, I’ve shorten my list to my top five reasonable goals. That way I’m not setting myself up to fail, and I have absolutely no excuses – NONE.

Gretchen Rubin, author of “The Happiness Project”, created 13 tips for sticking to your resolutions.

1. Be specific. Don’t resolve to “Make more friends” or “Strengthen friendships”; that’s too vague. To make more friends as part of my happiness project, I have several very concrete resolutions like: “Start a group,” “Remember birthdays,” “Say hello,” “Make plans,” “Show up,” and “No gossip.”

2. Write it down.

3. Review your resolution constantly. If your resolution is buzzing through your head, it’s easier to stick to it. I review my Resolutions Chart every night.

4. Hold yourself accountable. Tell other people about your resolution, join or form a like-minded group, score yourself on a chart (my method) -- whatever works for you to make yourself feel accountable for success and failure.

5. Think big. Maybe you need a big change, a big adventure – a trip to a foreign place, a break-up, a move, a new job. Let yourself imagine anything, and plan from there.

6. Think small. Don’t fall into the trap of thinking that only radical change can make a difference. Just keeping your fridge cleared out could give you a real boost. Look close to home for ways to improve and grow.

7. Ask for help. Why is this so hard? But every time I ask for help, I’m amazed at how much easier my task becomes.

If you have an especially tough time keeping resolutions, if you have a pattern of making and breaking them, try these strategies:

8. Consider making only pleasant resolutions. We can make our lives happier in many ways. If you’ve been trying the boot-camp approach with no success, try resolving to “Go to more movies,” “Entertain more often,” or whatever resolutions you’d find fun to keep. Often, having more fun in our lives makes it easier to do tough things. Seeing more movies might make it easier to keep going to the gym.

9. Consider giving up a resolution. If you keep making and breaking a resolution, consider whether you should relinquish it entirely. Put your energy toward changes that are both realistic and helpful. Don't let an unfulfilled resolution to lose twenty pounds or to overhaul your overgrown yard block you from making other, smaller resolutions that might give you a big happiness boost.

10. Keep your resolution every day. Weirdly, it’s often easier to do something every day (exercise, post to a blog, deal with the mail, do laundry) than every few days.

11. Set a deadline.

12. Don’t give up if something interferes with your deadline.

13. “Don’t let the perfect be the enemy of the good.” Thank you, Voltaire. Instead of starting your new exercise routine by training for the marathon, aim for a 20-minute walk each day. Instead of cleaning out the attic, tackle one bureau drawer. If you break your resolution today, try again tomorrow.

Wonderful tips! Time for me to get focused!

I wish everyone the best of luck in accomplishing their goals and Happy New Year!