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AHA supported bills await Governor Ige's signiture

Guest Blogger: Don Weisman, Hawaii Government Relations Director

In what has been a very productive State Legislative Session in Hawaii, three American Heart Association priority bills have passed and are awaiting Governor Ige’s signature.

House Bill 467 would require all Hawaii birthing centers to screen newborns for critical congenital heart defects (CCHDs) using a tool called pulse oximetry. CCHDs are the most common birth defects in the U.S. and the leading killer of infants with birth defects.

An estimated 300 infants with an unrecognized CCHD are discharged each year from newborn nurseries in the United States. These babies are at risk for having serious problems within the first few days or weeks of life and often require emergency care. Pulse oximetry, is a non-invasive, inexpensive test that consists of sensors placed on a baby's hand and/or foot to check blood oxygen levels.  The screening can identify some infants with a CCHD before they show any signs. Once identified, babies with a CCHD can be seen by cardiologists and can receive specialized care and treatment that could prevent death or disability early in life.

House Bill 589 would establish a state stroke registry and require all acute stroke care hospitals to collect and submit stroke data to the State Department of Health (DOH). The DOH would then compile and share reports based on the data with the state’s Stroke Coalition, which includes representatives from acute stroke care hospitals, EMS agencies, the DOH and the American Heart Association/American Stroke Association. The Coalition members would use the data to identify weaknesses in Hawaii’s stroke system of care and work to improve it with the goal of speeding patient access to the best available care and improving long-term health outcomes.

Senate Bill 1030 would raise the legal age to purchase and possess tobacco products to 21. Tobacco use remains the leading cause of preventable death in the United States, killing more than 400,000 people each year.  It is known to cause heart disease, stroke, cancer, and respiratory diseases, among other health disorders, and costs the U.S. $96 billion in health care expenditures each year. Nearly 1,000 kids under the age of 18 become regular, daily smokers each day; and almost one-third will die from it.

The Institute of Medicine (IOM) issued a report on March 12 bolstering this policy in which it found “increasing the minimum legal age for tobacco products will likely prevent or delay initiation of tobacco use by adolescents and young adults. The age group most impacted will be those age 15 to 17 years.” Raising the minimum legal age to 21 will mean that those who can legally obtain tobacco are less likely to be in the same social networks as high school students.

It is anticipated that Governor Ige will sign all three bills, and he has already signed into law another bill supported by the AHA which adds electronic smoking devices (e-cigarettes) to Hawaii’s existing smoke-free air law. Please join us by calling Governor Ige’s office at 586-0034 to thank him for supporting these measures and helping improve health in Hawaii.

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Ali and Rock Riggs

Alison “Ali” Riggs, and her husband Rock, are two of the AHA advocates helping to guide a bill through the Hawaii State Legislation this year that would require all newborns to be screened for critical congenital heart defects using pulse oximetry prior to discharge from their birthing center.

Below is their story:

 My 3-year-old daughter Grace was born with a severe heart defect. Her defect was not detected until she was six days old and was struggling to live. She spent the first eight months of her life in a children’s hospital, suffering unimaginable pain and fear.

We were extremely fortunate that she survived although her life will be a challenging one. If we would have known about her condition right away, her body, specifically her lungs, would most likely be stronger and her hospital stay and subsequent care would have been less.

A pulse-ox test is simple, painless, and inexpensive. Eight months in the neonatal intensive care unit is none of these. That’s why we’re strongly supporting the American Heart Association’s efforts to pass legislation requiring all babies to be screened prior to discharge. It will save and improve lives.

Ali and her husband have helped us educate lawmakers about this screening and its importance. Pulse oximetry is a simple, inexpensive, non-invasive screening tool used already by most hospitals that measures blood oxygen levels and pulse. When placed on a baby’s hand or foot it can indicate, if measures read low, the possibility of a congenital heart defect and the need for more extensive testing. Babies born with congenital heart defects sometimes don’t exhibit symptoms until days or weeks after being discharged and returning home. In critical cases, by the time the symptoms appear, and parents recognize them and return to the hospital, it might be too late to save the baby or long-term complications can occur. If identified early, many congenital heart defects can be corrected through advance treatments allowing the babies to go on to live relatively normal lives.

The Hawaii pulse oximetry screening bill passed out of the State Senate in March and was headed into a conference committee where final language was hoped to be agreed upon by House and Senate representatives. If approved it will move to Governor Ige’s desk for signature into law. Stay tuned for an update on the bill’s status in next month’s You’re The Cure newsletter.

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Update on the 2015 Legislative Session

Guest Blogger: Don Weisman, Hawaii Government Relations Director

AHA Priority Bills Still On Track As State Legislative Session Nears Half-Way Mark

Two of the American Heart Association’s priority bills were on track toward final passage into law as the Hawaii State Legislature neared the half-way point in its 2015 session: newborn heart screening and stroke data registry. 

(HB 467/SB 337) Newborn Heart Screening

HB 467/SSB 337 would require all newborns to be screened for critical congenital heart defects (CCHD) prior to discharge from their birthing center. One of the best ways to detect CCHD is through a simple, noninvasive, inexpensive test, called pulse oximetry, or pulse ox. The pulse ox test consists of sensors placed on a baby's hand and/or foot to check blood oxygen levels. It is a simple bedside test to determine the amount of oxygen in a baby's blood and the baby's pulse rate. Low levels of oxygen in the blood can be a sign of a CCHD. The test is painless and takes only a few minutes. If the baby’s levels are too low, additional tests may be conducted and advanced treatments pursued.

Congenital heart defects are the most common birth defect in the U.S. and the leading killer of infants with birth defects. Babies discharged from a birthing center without having a congenital heart defect diagnosed are at risk for having serious problems, or even death, within the first few days or weeks of life.

(HB 589) Stroke Data Registry

(HB 589) would establish a state stroke data registry. The bill passed its hearings in the House and was expected to pass a House floor vote before moving to the Senate for consideration. Establishment of a stroke registry in Hawaii could help illuminate weaknesses that exist in the state’s stroke system of care.

For example, data collected in a stroke registry may show poor patient education about stroke symptoms, geographical differences in the quality of stroke care received, problems with adherence to stroke treatment guidelines, or the need to improve pre-hospital stroke response or treatment by our county EMS agencies. The data could then catalyze Hawaii’s stroke stakeholders to find solutions to the challenges encountered.

Under the bill, all hospitals treating stroke patients would be required to use the AHA’s Get With The Guidelines-Stroke quality improvement tool to collect and share patient stroke data with the State Department of Health which would then work with the State Stroke Task Force, a coalition of representatives from stroke hospitals, EMS agencies, the Department of Health and the American Heart Association/American Stroke Association to assess the de-identified data and make recommendations to improve the state’s stroke system of care. Stroke is Hawaii’s third leading cause of death and a leading cause of disability.

Stay tuned for further action alerts to support these bills as they continue through the legislative process.

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Legislative Session Update

Guest Blogger: Lindsay Hovind, Washington Government Relations Director

The 2015 legislative session has gotten off to a great start for two of the American Heart Association / American Stroke Association’s biggest priorities: heart screening for newborns and Safe Routes to School.  

We were excited to see Representative Marcus Riccelli introduce House Bill 1285 which would ensure every newborn in Washington is screening for critical congenital heart defects (CCHD) using pulse oximetry. As you’ve been hearing from us, this is a top priority for AHA in Washington. On January 30 the bill was heard in the House Health Care & Wellness Committee. Volunteer Amy Norton (pictured at left) joined me on the Hill to testify about her son Spencer’s remarkable CCHD story. A week later the bill passed out of the committee unanimously. This exciting progress, coupled with Amy’s compelling testimony, garnered some terrific media attention. You can view the Q13 FOX story here. Last week the bill passed unanimously out of the House, now it’s on to the Senate!

Also of note, our campaign to increase funding for Safe Routes to School has been gaining momentum. You’ll recall a fantastic group of youth advocates from Eastlake High School in Sammamish traveled to Olympia for AHA’s lobby day where they rallied outside with signs to raise awareness of this important program.  Safe Routes to School gets kids and communities active, setting them on the path to a healthy lifestyle. (Check out this shout out in the Sammamish local paper.)

At this point in the session, the Senate has passed a transportation revenue package; some of the revenue would go to sustain the recent investments in Safe Routes to School. We are so pleased to see this program included, though we’re working hard to increase the investment so we can fully fund the need in our state.

Thank you for your continued interest and support of our advocacy work in Washington. There is still much work to do but it is encouraging to see legislators recognize the value of good health.

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Spencer's Story - looks can be deceiving

Written by Amy Norton, Spencer's mom

You NEVER think “it will happen to you” but… “it” happened to my family, my son. At only ten weeks old my son was fighting for his life. This is his story…

Spencer was born at home, on 11/08/13, with a team of experienced midwives. He was a healthy 9.1lbs., and appeared completely typical. He was perfect. Absolutely perfect. Except he had a secret, Congenital Heart Disease. He kept this secret for a long time. Almost too long.

At 24 hours postpartum, our midwives came back to our house to check on Spencer. Again, everything appeared typical, no physical signs of distress. Therefore, no oximeter was ever placed on him.

On day 7 Spencer was seen by our family doctor. Again, he appeared typical. He was back to his birth weight. Latching on and eating well. His body was doing an amazing job at compensating for his lack of oxygen. Too good of a job. No one ever thought it medically necessary to check a “healthy” boy’s oxygen level. So, he continued to hold on to his secret.

December 21st, Spencer caught his first cold along with my husband, daughter and myself. We got better after a few days. Spencer stayed sick, in fact, he was getting sicker. Worry set in.

I took Spencer back to the doctor.  He was now 8 weeks old. At this appointment I expressed my concern about his cold. I emphasized that something didn’t seem right. I asked, “could it be allergies or asthma?” I didn’t know to ask if it could be heart disease, I wish I did. Spencer had only gained 6 ounces over his birth weight. STILL no oximeter was placed on him. I was advised to come back in two weeks. However, Spencer didn’t made it two weeks.

My husband and I had had enough. Spencer was still sick, his skin started to look dusky and we knew something was wrong. We called the local children’s hospital and spoke with a consulting nurse. She immediately said to call 9-1-1. The medics arrived. This was the first time an oximeter was placed on my son!  He was now 10 weeks old.

Trauma began. Things progressed from a phone call to an airlift in a matter of hours. Before we knew it, we were standing over our happy baby in an induced coma at Seattle Children’s Hospital. This is where, literally, at the eleventh hour, we learned of Spencer’s secret. Our sweet boy was born with Congenital Heart Disease.

Things quickly went from bad to worse! ONE day after getting our son to the hospital he was placed on life support. He remained in the hospital for 6 weeks. Fighting for his life.

If an oximeter was placed on Spencer at 24 hours old, he never would have got as close to death as he was. Yes, he still would have had heart disease. Yes, he still would have needed open heart surgery. But he never would have suffered the way he did. If my husband and I were not advocates for our son I am afraid his outcome would have been different. An unbearable reality.

An oximeter test is so simple. It saves babies lives! As a mother who has lived through the unbearable, I ask, why is it not a statewide requirement that every child not tested? No matter where a baby is born in Washington, it should be protected from a tragic story like Spencer’s. Spencer is a miracle. We are blessed he survived. NO baby should suffer like him, not when it is so simple to detect.

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A Powerful Day in Olympia

Guest Blogger: Kami Sutton, Grassroots Coordinator

On February 3, a group of nearly 40 volunteers and 20 AP Government students from Eastlake High School in Sammamish gathered at our State Capitol for our 2015 American Heart Association Lobby Day. The morning started with informative presentations by Lindsay Hovind, our Government Relations Director and Mike Shaw, a contract Lobbyist with the American Heart Association, who went over the current climate in Olympia including budget progress and what is expected during this year’s legislative session.

While our adult volunteers were being briefed by Lindsay & Mike, our student advocates were already busy advocating for Safe Routes to School out on the front lawn of the Capitol. They held signs, and gave speeches on the importance of safe walking and biking paths for students to use to get their daily exercise while walking and biking to class. Along with our partners at the Childhood Obesity Prevention Coalition (COPC) the students did a great job getting our message out there of the importance of funding these projects that provide the necessary improvements for the students to get to school safely.

Back in the training room our students joined us for presentations by Representative Marcus Riccelli who sponsors House Bill 1285 which will mandate Pulse Oximetry Screening as part of the Newborn Screening panel to help detect Critical Congenital Heart Defects (CCHDs) in newborns in hopes of saving tiny lives. Joining us in Olympia were several CCHD survivors including 3-year-old Carissa Henderson and her family who helped make a powerful statement as to why this is such important legislation.

Our final presentations, made by Vic Colman, the Executive Director of COPC, gave us more details on the Safe Routes to School program and what funding by the legislature could do to help our communities make these vital improvements with sidewalks, crosswalks and proper signage to make this “healthy choice, the easy choice”. Our other legislative ask of the day was Tobacco Prevention and Control funding, which last year we were successful in securing $1.5M for the program, but with tobacco use still being the number one cause of preventable death, we need more funding to keep cessation programs alive and ready for citizens to use.

We had a quick question and answer session which made for great discussion with the presenters including Representative Riccelli who answered questions for the students about his advice on getting involved with state government and the importance of staying in touch with their lawmakers.

After a great morning training and a wonderful heart healthy lunch, each group got together to prepare for meeting with their lawmakers and planned out introducing our three agenda items to their Representatives and Senators. Each group spread out across campus to attend the meetings and we gained a lot of support for the issues at hand.

All in all this was a wonderful day with great volunteers and the training of many future advocates and possibly even some future lobbyists or lawmakers! Everyone had a great day and we rallied some amazing support from our Washington State Lawmakers that will boost our issues to the forefront of the chambers discussions in the future.

To stay up to date and involved with our 2015 legislation, don’t forget to visit www.yourethecure.org regularly and take action.

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The Csigi Family

For a parent, there may be no greater fear than losing a child.

Wojo and Cari Ann Csigi, of Waihee, experienced that loss in 2011 when their infant son Shayden died from complications related to congenital heart defects. Now they are finding solace through their support of the American Heart Association whose work includes efforts to improve outcomes for babies born with heart defects.

Shayden was born on July 19, 2011 six weeks pre-mature. After experiencing early signs of labor, Cari Ann called Kaiser Permanente, her medical provider and explained her symptoms. She was told to go immediately to her doctor who then had her transferred to Maui Memorial Medical Center. After an hour there, she was told that she would be transferred by air ambulance to Kaiser’s Medical Center on Oahu.

“My doctor explained to me that if I gave birth on Maui, my baby would be flown out to Oahu immediately after birth to receive the advanced care needed because he was pre-mature,” said Cari Ann. “I cried the whole plane ride over. Wojo met me and we were taken to Kaiser Moanalua Medical Center.”

“As I was wheeled into the operating room for a C-section I was super nervous, anxious and scared, but those feelings disappeared when I heard my baby boy cry for the first time,” Cari Ann continued. “Because he was six week premature, they had to take him immediately to the neonatal intensive care unit. When I finally got to hold him two days later he instantly stole my heart.”

“We were told that he may need to stay in the hospital until his original birth date. As the days went by, the hospital staff told us that Shayden was doing well and that he might be able to come home sooner. Then within three days of what we thought would be his release date, were told that they had discovered that Shayden had a heart defect and that he would have to be flown to San Diego for surgery as soon as possible. Everything happened so quickly.

Shayden had been diagnosed with a potentially life-threatening defect called aortic stenosis, a narrowing of the main artery carrying blood flow out of the heart to other organs in the body. In San Diego, he would undergo five different procedures, including two open heart surgeries. Following those procedures, doctors there were concerned that Shayden’s heart function wasn’t improving and suggested a transfer to Lucille Packard Children’s Hospital at Stanford. Wojo and Cari Ann, nervous and afraid, made the drive to the Bay area.

Shayden spent the next three and a half months at the Stanford Medical Center. In the first week he underwent a third open heart surgery. Two weeks later he went into cardiac arrest.

“That was the scariest day,” Cari Ann explained. “His blood pressure dropped, his heart rate dropped, his color changed; I thought that I was going to lose my baby that day. After 12 minutes of CPR they were able to revive him, but he was never the same after that.”

Cari Ann and Wojo said that many up and down days followed.  Shayden went through additional procedures to try and improve his condition. He contracted an infection in October and Cari Ann and Wojo were told that he might not recover, but the infection cleared. Kyra and Cari Ann’s mom were then able to visit for two weeks, the first time that Kyra and her parents had been together since their being in California.

“That was the best two weeks,” said Cari Ann. “I was so happy to finally spend time with my baby girl and my mom. Kyra got to spend time with her little brother. It was super hard to see them leave.”

One week later, Shayden contracted another infection. This time doctors sat Cari Ann and Wojo down and told them that they needed to prepare themselves and their family for the worst.

“Thanksgiving week was a really rough week for Shayden,” remembered Cari Ann. “As the days went by he began retaining fluid and got weaker. On Thanksgiving night, Wojo and I decided that it was time. While we still wanted to give Shayden every chance we could, we knew that he was telling us that he was ready to go.”

“The next day, our nurse called early and said that he was more swollen than he had ever been and that they had to increase his sedatives and turn up the rate of his ventilator to help him breathe. We got ready and went straight to the hospital.”

“When we walked into his room, I could see how swollen he was. Tears rolled down my face. We talked with our nurse and had the doctor, social worker and chaplain come in. Slowly they turned off the pumps for his medications and feeding. I got to hold him for a little while.”

“Throughout the day and night we watched as Shayden’s blood pressure and heart rate elevated then dropped, but he hung on. The hospital staff came in and talked and listened to music with us. It helped us to not feel so sad. At 1:23 a.m. on Saturday, Shayden passed. I think he was comfortable in leaving us. He could hear us with the others and knew that we would be OK. The staff let us give him a bath and put clothes on him. We got to hold him for a couple of hours, then it was time to say goodbye.”

“Losing Shayden was hard on our entire family and his memory is something we’ll carry with us the rest of our lives,” explained Wojo. “After his death, getting involved in supporting the American Heart Association has helped us to heal a little bit.”

Cari Ann’s and Wojo’s support for the American Heart Association has included organizing a team to participate in the Heart Walk event. They have also become members of the organization’s grassroots advocacy network called You’re The Cure, helping to support state legislation to improve methods used by Hawaii hospitals to screen all newborns for congenital birth defects using a technique called pulse oximetry screening.

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An update on One of Our Youngest Advocates - Coulter Cross

You might remember our littlest advocate Colter and his mom Bobbie from last year. With Congenital Heart Defect Awareness week upon us (February 7-14) we wanted to give you an update on how he is doing.  This message was written by his mom, Bobbie:

Colter celebrated his 3rd birthday in November as well as his 3rd Heart-a-versary! Colter's busy as ever playing with all of his favorite superheroes, Batman in particular! Colter's been perfecting his football moves as he wants to be just like his favorite football player, Russell Wilson. It's been such an honor to be a part of his journey to living a healthy life.

Medically, Colter is doing very well, he had a stent placed in his conduit this last August. Due to some complications during the stent placement, the routine angioplasty wasn't done on his pulmonary arteries. So we've had monthly checkups with his Cardiologist to monitor him very closely until June, when he'll have another catherization to open those arteries back up. I still can't believe some days that there's anything wrong with his heart, the amount of energy that boy has is incredible! He plays football from sun up to sun down. We look forward to 2015 and all the year has to bring!”

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This CHD Awareness Week, Help Us Save Little Hearts Across The Country

All newborns in Pennsylvania are now screened for critical congenital heart defects before leaving the hospital.  And, it's because of the hard work of our many passionate and committed advocates that this lifesaving legislation was passed in 2014.

A quick and painless procedure called pulse-oximetry is performed on all newborns before they leave the hospital to screen for critical congenital heart defects.  Congenital heart defects are the most common birth defect in the United States, and early detection and treatment are crucial.

It's Congenital Heart Defect Awareness Week, and it’s important that we all stand together to raise awareness to help save little hearts across the country.  All babies deserve a healthy heart – learn how you can help ensure our newborns leave the hospital healthy: http://bit.ly/1xBlpla

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Advocate Spotlight - Libby Char

Libby Char, Hawaii

Despite her extremely busy work schedule as an emergency physician, as the Medical Director for EMS and several of Hawaii’s first responder agencies and the  American Heart Association Hawaii Division Board President Libby Char, M.D. still finds time to support American Heart Association policy efforts to make Hawaii healthier.

She sees the value of using policy change as a way to more quickly and efficiently change public norms that will result in improved public health.  Dr. Char has supported our efforts this year to require all newborns to be screened for congenital heart defects, requiring all high school students to receive CPR training prior to graduation, and development of policy aimed at improving Hawaii’s stroke system of care.

Just one example of the great work Char has done was earlier this year when she, along with other AHA volunteer advocates, met with the Hawaii Dept. of Education assistant superintendent of the Office of Curriculum, Instruction and Student Support, Leila Hayashida, to propose changes to the high school health class curriculum that would require CPR instruction to be included. Completion of a health class is required for graduation.

AHA volunteers also worked with Hawaii Department of Health representatives to provide funding to the DOE to purchase CPR manikins and training equipment for health classes. AHA CPR trainers also taught the DOE’s health class resource teachers in how to implement simple “hands-only” CPR training, so that they can train the classroom instructors.

The AHA’s “hands-only” CPR can be taught in just one class period. Dr. Char believes that every student should receive that life-saving lesson prior to graduation. In places like Seattle where this type of policy has been mandated survival rates from cardiac arrest have risen to above 60 percent, while in Hawaii survival rates remain below the national average of approximately 30 percent. Imagine if every high school student going forward learned CPR in school how many more people in our communities could be prepared to save a life.

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