American Heart Association - You’re the Cure
WELCOME! PLEASE LOGIN OR SIGN UP

LoginLogin with Facebook

Remember me Forgot Password

Be the Cure, Join Today!

  • Learn about heart-health issues
  • Meet other likeminded advocates
  • Take action and be heard
SIGN UP
Newborn Screenings Now in Effect in TX

Because of the hard work of advocates like you, all newborns in Texas will now be screened for critical congenital heart defects before leaving the hospital!

Starting last week a simple procedure called pulse-oximetry will be performed on all newborns before they leave the hospital. It’s quick and painless, and most importantly, it can save lives. Congenital heart defects are the most common birth defect in the United States, and early detection and treatment are crucial.

Please click here and thank Department of State Health Services Commissioner David Lakey and Health & Human Services Executive Commissioner Kyle Janek for implementing this life-saving law in Texas!

Wider use of pulse-oximetry could help ensure that more than 90% of heart defects are detected. Lives have already been saved as a result of these screenings. Recently in New Jersey a newborn’s life was saved just hours after their law took effect!

Read More

Lily Shields, Mississippi

Lily Shields Waveland, MS

March 12, 2007 was the most terrifying day of Tracy Shields’ life.  She took her newborn daughter, Lily, to the doctor for her two week check-up where the doctor discovered an abnormal heart rhythm.  After an EKG confirmed a problem, the doctor sent Tracy and Lily immediately to emergency room.  Tracy was in a state of panic!

Once Tracy and Lily arrived at the hospital, a Pediatric Cardiologist was waiting for them.  He hooked her up to a monitor and explained that Lily had Supraventricular Tachycardia (SVT), a heart condition where thLily Today: An Active & Healthy 7 Year Olde heart's electrical system doesn't work right, causing the heart to beat very fast.

In order to get Lily’s heart into a normal rhythm, doctors put a Ziploc bag of ice on her face and shocked her back into a normal rhythm. 

“Watching your 4lb baby scream while they held a bag of ice on her face was one of the hardest things I have ever had to do,” said Tracy. “From the ER, we were brought up to the PICU, where we lived for the next two weeks.”

Doctors finally got Lily’s heart into a normal rhythm that was controlled by medication for the first year of her life.  When Lily was 8 months old she was able stop taking the medications.  She had thankfully outgrown the SVT.  She is still checked yearly, but is now a healthy, active seven year old.  

Lily’s heart defect, as well as those of countless other Mississippi newborns, could most likely have been detected right after birth, had she been given a pulse oximetery screening.  

The American Heart Association is working to have pulse oximetry screening added to the Newborn Screening Panel for all babies born in Mississippi.  This would require pulse oximetry screening of all newborns for congenital heart defects.  Congenital heart defects are the number one killer of infants with birth defects. 

Read More

Christopher Pena, Mississippi

Christopher Pena, Richland, MS

Christopher's Mom, Kristi, shares her son’s story with heart disease...

My son Christopher was born in April 2008.  Shortly after birth, he appeared to be struggling under the vigilant watch of his nurses.  A pulse ox reading indicated low oxygen, which led to a chest x-ray revealing Christopher had a severely enlarged heart.  Doctors diagnosed him with non-compacted cardiomyopathy, a very rare condition in which the heart muscle remains sponge-like after birth and causes the heart to be very weak. 

Christopher's cardiomyopathy affects his right and left ventricles, where it is very hard for his heart to pump and function correctly.  The medical team told us that the only option was a heart transplant.  Without a guarantee of survival, we opted against a heart transplant with only the very best quality of life in mind for our son.  Christopher was given 6 months at the most to live.  We believed that the doctors could tell us what they knew from books, but our Mighty God is the Great Healer and could fully heal his heart either way.  We knew our son would be okay, but we would need some help. 

At 45 days old, Christopher was admitted into hospice care.  Fifteen months later, he was released from hospice when an echo cardiogram showed that his heart function had tripled!  At 18 months, his heart function was almost normal!!  God still performs miracles each and every day.

In February 2010, it was discovered that Barth Syndrome (BTHS) is the cause of Christopher's cardiomyopathy.  Barth syndrome is a very rare, sex-linked genetic disorder of lipid metabolism that affects males.  Typically, boys with BTHS present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth.  Other important features of BTHS include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature.  Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. 

There are less than 200 known cases of Barth Syndrome worldwide.  If people would hold hands from one end of the earth and go all the way around the world, only one of those people would be a boy with Barth syndrome.  It was described to us like finding a needle in a haystack for the doctors to discover that Christopher has BTHS!  There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. 

Christopher has most of the characteristics, including cardiomyopathy, neutropenia, muscle weakness and some other problems.  He has homebound, speech, physical and occupational therapy as well as therapeutic horseback riding.  He is currently doing very well, all things considering! 

Having this disease, which impacts our entire family, has been both the worst and best thing to ever happen to our family.     We still depend on miracles every day.  God is in control; He doesn't do half miracles and our trust in Him has never failed us.  Christopher has done many things to represent miracles, Barth syndrome, our local Children's Miracle Network hospital and Blair E. Batson Hospital for children.  He has been in countless news stories, mini documentaries and on the cover of multiple local magazine covers.  He even was mentioned in a recent Wall Street Journal article about rare diseases.  In addition to that, he is one of the 'faces' describing the 'look' of Barth syndrome in the orphanet journal of rare diseases written by one of the Barth syndrome specialists.

Christopher has met many amazing individuals along the way, including the President, Miss America and numerous other celebrities.  Christopher is in fact a living legend himself.

This past year, Christopher had a mild stroke.  For many reasons the American Heart Association is a cause near and dear to the hearts of our family.  Christopher represents the true need for pulse ox screening and congenital heart defects and stroke awareness.  We thank the American Heart Association and its volunteers for their tireless efforts in making sure the public has the knowledge and medical care needed to save lives.

To read more about Christopher or to follow his progress: Facebook--  Crusade4Christopher and/or CaringBridge Christopher. 

Read More

Small Hearts. Big Challenges.

Early Detection Leads to Early Prevention

Small hearts can conceal big challenges, especially when it comes to congenital heart defects. It’s one of the most common birth defects in the U.S. and the leading killer of infants with birth defects.

What if we could do something simple to ensure a strong start for a new life? We can. It is through pulse oximetry testing.

What is pulse oximetry screening? It is a simple test that helps spot heart defects in newborns. This test is both quick and painless, but more importantly, it saves lives. Before a baby leaves the hospital, the test helps identify heart defects, potentially saving its life.

Despite this, pulse ox is not required in all states, allowing thousands of parents to take their child home without knowing the condition of his or her heart.

This is where we need help! We need pulse oximetry tests in every state!

Why?  The evidence speaks for itself: Wider use of pulse ox screening could help identify more than 90 percent of heart defects.

And in case you need more convincing: Congenital heart defects (CHD), are the most common birth defect in the U.S. and the leading killer of infants with birth defects. And they cost money: In 2004, hospital costs for all individuals with CHD totaled $2.6 billion.

Over 30 states have already passed laws, or are in the process, requiring newborns to have pulse ox screenings prior to being discharged from the hospital. But we won’t stop until all newborns have access to this lifesaving test!

It’s time to ensure every child has a healthy heart. Help us spread the word and tell your legislator to support pulse oximetry testing for all newborns.

Get involved by signing up today!

Read More

All Georgia Newborns to be Screened for Heart Defects

For not one, not two or three but for FOUR long years...

Together, we have worked to fight the No. 1 killer of infants with birth defects, critical congenital heart defects (CCHD).

We are thrilled to announce that on Tuesday, May 20, rules went into effect to ensure that ALL newborn babies in Georgia will be screened for congenital heart defects before they leave the hospital. Finally, protecting the heart health of Georgia's infants is mandatory!

Dr. Donald Page, Governor Elect of the Georgia Chapter of the American College of Cardiology, states that, “Simply put, a small clip is attached to the infant’s finger or toe and within minutes the test will measure the amount of oxygen in the blood and the baby’s pulse rate.  Low readings could indicate a birth defect and warrant immediate investigation with further testing.” Pulse Oximetry screening is quick, inexpensive and non-invasive and finally all of Georgia’s newborns will receive this the life-saving knowledge that this test will give, before they go home with their families.

Important note: The policy will officially take effect on July 1, 2014 and the Department of Health will conduct training for any hospitals in need.

Thank you for all the hard work and effort that has gone into making this policy change a reality!  Let’s continue to work towards protecting the heart health of our children and our communities.

Read More

The Bass Family, Hattiesburg: Pulse Ox Matters

WHY PULSE OX IN MISSISSIPPI SHOULD BE A REQUIREMENT

After a very difficult and unpromising pregnancy, by the grace of God, my daughter was born on February 9, 2004.  We had been told for months that she wouldn’t survive the pregnancy due to complications.  However, upon delivery Abby was placed in the well-baby nursery.  We were on top of the world!  A very grim pregnancy had ended with a seemingly healthy baby girl.  Until the following morning, when the doctor entered my hospital room, sat on the foot of my bed, and delivered the most devastating news any parent could hear.  My tiny baby girl was diagnosed with coarctation of the aorta, a congenital heart defect.  Due to the results of a pulse oximetry screening, additional testing was ordered that revealed her heart defect.  Had the doctor not ordered this screening, Abby’s heart defect would’ve been undiagnosed which could have been fatal.  It breaks my heart to think of all the undiagnosed heart defects that result in the loss of a life when a simple non-invasive screening could be done on every infant and would result in saving many lives.

Abby required open heart surgery when she was only four days old.  The day after her surgery, Abby coded.  The hospital staff were able to perform CPR directly on Abby's heart due to her chest being left open after surgery.  She was then placed on a machine called an ECMO, which literally pumped the blood throughout her body giving her time to heal.  She remained on the ECMO for eight days and then continued on the ventilator for five additional weeks.  It was during these days and months that we fully came to understand God's grace.  It wasn't until we were completely helpless that we realized how awesome God is.  Abby later required a second open heart surgery at 18 months old.  Once again, God watched over her and carried us through.

Abby is simply a walking miracle.  She is now ten years old and is one of the most loving people you will ever meet.  We are so proud of the person she is becoming.  She is so kind hearted, and she has an inspiring love for people.  Abby’s presence literally lights up a room.  Through her sickness and now in her good health, she has already impacted many lives, including ours.  Abby has the best HEART of anyone that we know!

Read More

Meet "Brave Heart" Asher

This week, we've been asking You're the Cure advocates to help grow the number of Mississippi advocates as we prepare to work on our next campaign, pulse ox screenings for newborns.  This simple non-invasive test, when performed on newborns, leads to early diagnosis and treatment of congenital heart defects (CHD), the most common birth defects in the United States and the leading cause of birth defect related deaths in children under one year.  

Will you please click here and invite your family and friends to become part of the cure today?

Your voice is important to help newborns live longer, healthier lives.  Just ask Anna, the mother of three year old "Brave Heart" Asher, a congenital heart disease survivor.  

Asher, was born with a complex CHD called Tetralogy of Fallot with Pulmonary Atresia.  He also had an Atrial Septal Defect and hypoplastic branch pulmonary arteries; seven heart defects total.  During pregnancy, his parents were unaware of Asher's heart defect, so imagine their shock when their sweet baby boy was born fighting for his life.  Although the family resides in Gulfport, Asher courageously endured two open heart surgeries and three heart catheterizations before his first birthday at Children’s Hospital of Philadelphia.  He had his fourth heart catheterization at two years old.  Asher also has developmental delays due to his heart surgeries and a PVL brain injury.  His CHD will require life-long specialized cardiac care, along with heart surgery/procedures, as he grows or develops complications.  

Help us have a strong You're the Cure voice in Mississippi.  It is with a strong voice that we will be able to help newborns with heart defects live longer, healthier lives. 

Read More

Garrett and Other Children Need You - Will You Help?

Thank you to everyone who helped make CPR Education in Schools a success in Mississippi!  Now, it's time to shift gears and begin on our new campaign, pulse oximetry screening of newborns.

Pulse ox is quick and painless.  Before a baby leaves the hospital, the test helps identify heart defects, potentially saving the child's life.  Despite this, pulse ox is not required in Mississippi right now, allowing thousands of parents to take their child home without knowing the condition of their heart.

For example, meet Garrett, a very active 12 year old who lives in Mississippi.  He was a small heart born with a BIG challenge.  When he was several hours old, a nurse noticed that his breathing was labored; he was rushed to NICU and given a pulse ox screening.  It was determined that he was born with a coarctation of the aorta that was restricting the blood flow to the lower part of the body.  This is one lucky boy!  Had he been screened at delivery, his heart defect would have been caught and steps immediately would have been taken to correct this.

Efforts currently are underway in Mississippi to add pulse ox screening for critical congenital heart defects to the newborn screening panel that will allow newborns, like Garrett, to live longer, fuller lives.

To achieve this goal, we need you to CLICK HERE to invite your family and friends to join us in support of early detection and early prevention of critical congenital heart defects.  The more Mississippi voices we have advocating for pulse ox screening, the better our chances are that we'll protect small hearts facing BIG challenges.

Read More

Governor Signs Newborn Heart Defect Screening Bill

On Monday March 3rd, Governor Susanna Martinez signed a piece of life saving legislation into law in New Mexico.  House Bill 9 requires all birthing facilities to perform pulse oximetry screenings on newborns prior to discharge from the hospital.  This legislation moved quickly through a very short 30 day budget-only session. 

Late in January, Governor Martinez sent a message to the legislature asking them to work on legislation related to Critical Congenital Heart Defects.  This prompted the introduction of House Bill 9.  The bill made it through one house committee, the house floor, 2 senate committees and the senate floor unanimously.

Thanks to all YTC advocates for taking action and helping this bill become law! 

Want to help spread the good news?  Share this image on Facebook!


Read More

Our #CHDweek Message: Pulse Ox Saves Lives!

Critical Congenital Heart Disease (CCHD) accounts for 27% of infant deaths that are caused by birth defects - the most common birth defect in the U.S.  Early detection is key, which is why advocates across the country are speaking up for a simple, life-saving test for all newborns. 

Pulse oximetry screening is a low-cost, highly-effective, and painless bedside test that can be completed in as little as 45 seconds at less than $4 per baby.  Already this year, Illinois, Michigan, Missouri, New York, and South Carolina have joined the growing list of nearly 30 states in which all newborns will be screened for CCHD using a pulse ox test.  Most other states are either working to pass legislation this year or are developing rules to carry out previously enacted legislation.  Just within the last couple weeks, New Mexico’s pulse ox bill passed out of the House of Representatives and is on its way to the Senate- and in Virginia, advocates are now urging the governor to sign the state’s pulse ox bill into law! 

If we can save a child’s life, shouldn’t we?  The American Heart Association is proud to work with partner organizations committed to the health of our nation’s littlest hearts – and you can help!  Advocates like you are sending messages, attending lobby days and speaking out across the country.  But our work is not done until every parent can take their baby home from the hospital knowing their heart is healthy.  During Congenital Heart Defect Awareness Week (February 7th-14th), help us make some noise in support of mandatory pulse ox testing in every state by SHARING the following resources with your Facebook friends and Twitter followers, using the hashtag #CHDweek:

  1. Pulse Ox Valentines: On February 14th, show the love for pulse ox screenings that help identify broken hearts! 
  2. Video: A 45 Second Test That Can Save a Life
  3. AHA CEO Nancy Brown’s Huffington Post article: Too Many Babies Are Born With Heart Defects; Simple Test Helps Diagnosis
  4. Fact Sheet: Precious Information- Pulse Ox Screening for CCHD
  5. AHA Congenital Heart Defects Information & Resources

 We want to hear from you!  Are you or a loved one a CHD survivor?  Tell us your story in the comments below…

(Please visit the site to view this video)

Read More

[+] Blogs[-] Collapse