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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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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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Christian's Story

Written by Aimee Lybbert, Christian's mom

When our son Christian was born he appeared perfectly healthy. He passed all the standard newborn screening with flying colors. Every medical professional assured us he was fine. But in reality our son had a broken heart.


Our first thought after learning about Christian's heart defect two weeks after his birth was, why didn't the ultrasound show us that he had major congenital heart defects? We later learned that up to 25% of major heart defects are not detected during ultrasounds. 

We also later learned that although our hospital did a pulse oximetry test just after birth, they did not do another test when Christian was 24 hours old. It was not a hospital requirement.  When we asked our local hospital why the test wasn't done we were told that the cost of false positives were too high and they didn't want to scare parents and do unnecessary testing.  Congenital heart defects are the single most common birth defect.


Screening for Critical Congenital Heart Defects or pulse ox testing can detect seven different critical congenital defects.  Our son Christian has three of the seven critical congenital heart defects that it can detect. 

Today Christian is 16 months old. He's had two open chest heart surgeries and he will need at least two more. He will never be completely fixed or healed but with the help of his diligent medical specialists, he is thriving despite it all.  If he had received that second pulse ox test at 24 hours Christian would not have gone into full heart failure before his heart defects were detected. He would not have had to go into his first heart surgery with a weakened heart and an overtaxed body. 

I was honored to provide written testimony to the Washington State Board of Health in support of requiring pulse oximetry testing for all newborns, so that other families don’t have to experience what we went through. We're lucky that Christian made it, but not all Washington babies are as lucky.

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A Win for Montana Babies!

Guest Blogger: Amanda Andrews, Montana Government Relations Director

As of July 1st 2014, pulse oximetry screening is mandatory for all newborn babies in the state of Montana.  This is a crucial Administrative Rule that was put forth by the Montana Department of Health and Human Services with support from The American Heart Association, The March of Dimes, and physicians from around the state.  This might sound like a mundane rule passage, but it’s truly an incredible step towards ensuring the health of all babies born in Montana. 

Why is this Important?

The American Academy of Pediatrics has identified pulse oximetry screening as a crucial action for identifying babies born with critical congenital heart defects (CCHDs).  Heart defects are the cause of 24% of infant deaths due to birth defects.  As CCHDs are life threatening, it is essential that hospitals take all steps necessary to begin the screening process before serious issues arise. 

If you follow our blog, you may remember the story of Colter Cross, a little boy born with a CCHD.  Colter passed the standard hospital tests and was sent home with no pulse oximetry screening.  Luckily, Colter happened to have a checkup with his doctor before his heart disease took his life.  He was given a pulse oximetry screening at 4 days old during his first doctor’s appointment.   During the screening they found low oxygen levels and sent him to see a cardiologist immediately.  Colter went on to fight an incredible battle and is now an active and precocious 2 year old.  You can read Colter’s full story here.

I am proud of my home state for implementing mandatory pulse oximetry screening.  This simple, non-invasive, and inexpensive test can detect 90% of CCHDs. Previously, there were 7 hospitals in Montana that were not screening every newborn.  Now, every baby born in in our state will have this life-saving screening.  To hear more about this, or to help this screening become mandatory across the country, email me at Amanda.andrews@heart.org

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We Did It! Passionate PA Advocates Help Newborn Pulse Ox Bill Cross the Finish Line

In Pennsylvania, an April "Pulse Ox" Advocacy Day, with dozens of advocates in attendance, proved successful in getting HB 1420, which had been passed by House many months earlier, moving in the Senate. And, when the bill passed the Senate but got caught up in an unrelated political battle in the House just before the Legislature was to recess for the summer, Government Relations Director, Jennifer Ebersole, reached out to advocates on a Saturday afternoon. These outstanding You're the Cure volunteers made certain legislators heard their voices throughout the remainder of the weekend, getting the bill on the agenda by Monday morning and through its final step in the House by Monday evening.

As Jen puts it, "I can say with extreme certainty that the reason this happened was because of the overwhelming outpouring of phone calls that House Leadership received." We can’t thank our PA advocates enough for their perseverance in ensuring all babies born in the Commonwealth will now receive pulse oximetry screening to help detect congenital heart defects.

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Thank You for a Great Year!

Guest Blogger: Rick Lieberman, Advocacy Committee Chair

As the AHA comes to the end of our fiscal year, I want to take the opportunity to thank all of the amazing Arizona Advocates for all you do.  Thanks to your dedication, actions, and support, we were able to pass two heart healthy pieces of legislation: House Bill 2491 and Senate Bill 1336. HB 2491 will ensure Arizona newborns are screened for critical congenital heart defects using pulse oximetry, an inexpensive, non-invasive screening tool.  

SB 1336 aims to increase physical activity in our community by limiting schools’ liability when they open their grounds for recreational community use after hours.  Please take a moment to thank Governor Brewer for signing both of these bills into law!

As the legislative session has wrapped up, I would like to take this opportunity to thank some of my fellow advocates for their amazing work and effort this year. I especially want to thank Demaree Wilson, Molly Wright and William Mueller for their participation and testimonies in legislative hearings on why passing HB 2491 this year was so important. Additionally, I would also like to thank Jane Powers and Shellie Wenhold for their commitment and passion on the CPR bill.  Finally, I would like to thank the Arizona Government Relations Director, Nicole Olmstead, for her dedication, passion, and fearless leadership. 

Without the dedication of all our advocates and the leadership from Nicole, the American Heart Association would not be able to accomplish as much as we do.  Thank you very much for all of your support and I look forward to another great year!

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Our Next Step to Ensure Statewide Heart Defect Screening in Washington

As we’ve shared with you before, a movement is building across the nation to screen every newborn for critical congenital heart defects (CCHD) using pulse oximetry. CCHDs are the number one birth defect in newborns affecting roughly 1 in 100 babies. Wider use of pulse oximetry screening, a quick, painless, inexpensive test, could help identify more than 90 percent of congential heart defects.

More than 30 states have now established a statewide requirement to ensure every baby is screened. We are working with partners at the March of Dimes to do just that here in Washington. Together on Wednesday June 11th we asked the State Board of Health to add CCHD to our state’s newborn screening panel. Newborns are already screened for other diseases and deficiencies; the American Heart Association believes congenital heart defects – the most common cause of infant death – should be included too.

Families with children born with CCHD’s shared their stories with decision makers at the State Board of Health on the 11th. We hope to be able to announce soon that Washington will join the other 30 plus states that screen newborns for CCHD. Stay tuned for an update as soon as a decision is made.

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An Update on Our Efforts to Ensure Statewide Heart Defect Screening in Montana

As we’ve shared with you before, a movement is building across the nation to screen every newborn for critical congenital heart defects (CCHD) using pulse oximetry. CCHDs are the number one birth defect in newborns affecting roughly 1 in 100 babies. Wider use of pulse oximetry screening, a quick, painless, inexpensive test, could help identify more than 90 percent of congential heart defects.

More than 30 states have now established a statewide requirement to ensure every baby is screened. We are working with partners at the March of Dimes to do just that here in Montana.

On Wednesday May 28th, doctors, American Heart Association staff and families of children born with critical congenital heart defects testified to the Department of Public Health and Human Services on the importance of this screening. One very moving moment was when mother Bobbi Cross spoke about her son Colter. Colter looked completely healthy when he was born, he passed all the normal screenings and went home 24 hours after he was born. Only he wasn’t ok. Three days after he was born at routine checkup it was discovered he has a serious heart defect. To read more about Colter’s story click here.

We hope to be able to announce in the next month that Montana will join the other 30 plus states that screen newborns for CCHD.

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Advocate Spotlight: Janice Edwards-Jackson

crafted by Janice Edwards-Jackson, Arizona

I am 34 years old and a stay-at-home mom of 3 children, ages 8, 6, and 3.  On September 21, 2013, I had just returned home after taking my 2 older children to piano lessons.  We were eating lunch when I stood up to warm up my food in the microwave.  The room started spinning.  I thought I was about to have a migraine, since I get them every so often, so I grabbed the counter and made my way back to my seat.  I became sleepy and the spinning would not stop. I told my husband that something was wrong and that I wanted to go to sleep so he helped walk me to the couch and gave me 2 aspirin.  I slept for 3 hours.

2 days later, I went to the doctor and was told it was vertigo/inner ear, but the next day something still didn’t feel right, so I went to the ER at a hospital near my house.  They did a CT scan and MRI and told me I had a brain tumor.  I was terrified.  I was transferred to Barrows Neurological Institute, to confirm the test results, but I was then told that I had a small thalamic stroke.  Learn to spot a stroke FAST by clicking here.

It turns out that my stroke was caused by a congenital heart defect known as PFO (atrial septic defect/hole in the heart). Until this incident, I never knew I had a congenital heart defect (CHD) and a bi-cusped aortic valve.  I went to both physical and cognitive therapy and I currently take 325 mg of aspirin daily. 

Additionally, I had all of my children checked and I found out that my youngest daughter has a PFO as well and that one of her coronary arteries is not completely on the correct side.  The doctor hopes that as her heart grows, that the PFO will close and that the coronary artery will completely move to the correct side.  We are hoping that this will happen by the time she is 5.  If not, she will have to have surgery.

Unfortunately, congenital heart defects are the number one birth defect in newborns.  There are an estimated 500 babies born in Arizona each year with congenital heart defects and of those 125 babies will have a critical congenital heart defect.  Critical congenital heart defects are heart defects that often require major corrective procedures in the first year of an infant’s life.  Thankfully, House Bill 2491 was signed into law by Governor Brewer and now all newborns in Arizona will be screened for CHDs via pulse oximetry screening prior to leaving the hospital.  HB 2491 will save many lives in the future by catching heart defects at the earliest point in life allowing for early detection and treatment.  Visit here for more information.

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Why Pulse Oximentry Testing Matters

Guest Blogger: Don Weisman, Hawaii Government Relations Director

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. They submitted testimony sharing their story and the bill progressed through the House and Senate, but failed to pass in conference committee after language from another, unrelated bill, was added to it.

“Heart defects are the leading cause of birth defects and it comforts us to know that we’re working to help support other families deal with those challenges,” said Wojo. “Each year, about 20 percent of all the funds that the American Heart Association raises through its events is reinvested back into research, some of which is helping to continually improve the treatments available for those babies, as well as in helping to treat other cardiovascular diseases. A large portion of the funds raised also helps to improve health in our communities by helping to prevent cardiovascular diseases and stroke. By supporting the American Heart Association, it helps us to keep Shayden’s spirit alive.”

“Shayden is our super hero,” added Cari Ann. “Shayden taught us that no matter how tough life gets, we need to be strong, we need to love and we need to keep going. There is not a day that goes by that we don’t think about Shayden. He will forever be in our hearts and minds.”

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