Heart Disease Affects Children, Too–Walk for Healthy Hearts

Heart Birth Defects Are #1 Birth Defect, but Survivable

Mila Rose on her 1st Birthday!

Cardiovascular disease (CVD) is the No. 1 killer of all Americans. In fact, someone dies from CVD every 39 seconds. Heart disease also kills more women than all forms of cancer combined. Congenital heart defects are the most common cause of infant death from birth defects. The American Heart Association invites the public to join the October 1st Heart Walk event at Kensico Dam to join the fight against heart disease, fund research, and help save lives. Registration is open online at www.westchesterheartwalk.org.

The Heart Walk is the AHA’s biggest annual event, raising more than $400,000 for AHA programs and research at last year’s event. Funds raised at the Heart Walk will support research to help prevent and treat heart disease, stroke, and pediatric heart disease.

Congenital heart defects, or CHD, affect nearly 1% of―or about 40,000―births per year in the United States. Early detection, advances in science and treatments of congenital heart defects help save lives. The Konow family of Ossining is grateful for early detection and advanced treatments for CHD. Their baby had lifesaving open heart surgery on the day of last year’s Heart Walk. They are sharing their story to raise awareness and will be honored at this year’s event.

Kailey and Ryan Konow showed up for their 20-week prenatal appointment with the anticipation and excitement of any expectant parents. The doctors confirmed they were having a girl—but that she had a rare congenital heart defect. Further tests confirmed her diagnosis: a double outlet right ventricle VSD, or ventricular septal defect (holes in the heart), and pulmonary stenosis, or narrowing of the heart artery. The doctors said she would need open heart surgery–it was just a matter of when.

Because of early detection, the neonatal intensive care unit team was ready and waiting to care for Mila Rose when she was born on August 3, 2016.

“My husband and I got to hold her for only a couple of minutes before she was whisked away to begin her tests,” said Mila Rose’s mother, Kailey, “After five days in intensive care, we took her home to get her strong for her impending surgery.”

After two months, they noticed the soft spot on her head was sunken, and took her to the pediatrician. By the time they arrived, Mila Rose’s eyes, mouth and lips were blue. Her oxygen levels were dangerously low and she was sent to the emergency room. A simple common cold caused her fragile heart to work overtime. Three days later, she was released, but within the week, the same symptoms returned, but worse.

“It was the scariest event yet. Her oxygen levels dipped and they needed to intubate her with a breathing tube and put her in a coma so her heart would stop working so hard,” she said.

Mila Rose had emergency heart surgery to have a shunt placed in her narrowed artery, but the other defect would require additional surgery in the future. Post-surgery, she was kept isolated at home to minimize the risk of illness. On January 6th, she had the surgery for her full heart repair, and went home after 15 days, her heart fully repaired.

“At first, we couldn’t believe this was happening to us. Why did they have to find something? Now we are so grateful for the technology and research that allowed the early detection. We’re so grateful for the doctors who continually focused in on her diagnosis and were always ready for her. She will be closely monitored for her cardiology team for the rest of her life, but her future is bright and our hearts are full,” said Konow.

CHD is the most common heart birth defect but it is survivable—the AHA journal Circulation that estimates about 1 million children and 1.4 million adults in the United States were living with a congenital heart defect (CHD) in 2010. The American Heart Association’s funding for pediatric cardiac research is second only to the federal government. Learn more at www.heart.org. Money raised at events like the Heart Walk help fund research.

The Heart Walk is sponsored by White Plains Hospital, WMC Health/Maria Fareri Children’s Hospital, Fujifilm, Dr. Patrick W. Thomas and Mrs. Johanna D. Thomas, New York Presbyterian, Phelps Hospital/Northwell Health, New York Medical College, Stop & Shop, Examiner Media, The Peak, Buzz Creators, News 12 Westchester, and Westchester Magazine.

 

Dutchess-Ulster Heart Walk Honorees – Madison and Matthew

Thanks to our Junior Heart Walk Honorees this year, Madison Dallies and Matthew Burchell! Here are their stories.Matthew and Madison

 

Madison Dallies

At a routine ultrasound showed there was a possible hole in Madison’s heart, in between her ventricles.  A future level 2 ultrasound confirmed that she definitely had a hole in between the ventricles, but they believe there wasn’t any constriction at that time in her Pulmonary Artery.  A month later, the doctor said that Madison’s congenital heart defect was worse than we thought and she was diagnosed with Tetralogy of Fallot—a rare condition of four heart birth defects at once.

Doctors said the constriction in her Pulmonary Artery was very severe and that she would need surgery to place a shunt within 24 hours of her birth.

On Monday April 14th at 3:04 PM, Madison was born and the surgery for her shunt placement would occur the very next morning at 7:30 AM. IMG_6897

Her mother said, “That night, I went and met my little girl for the first time.  She is a fighter and the strongest person that I know.  She was born with virtually no pulmonary artery opening, a large hole in between her ventricles, and an overriding aortic artery, which are 3 of the 4 conditions of Tetralogy of Fallot.  The 4th condition is the thickening of the right ventricle wall, which has been occurring over time since she was born.”

Madison’s first surgery lasted almost 5 hours. They successfully placed a shunt to redirect the blood to the branches of her pulmonary artery from her aortic artery.

“Our first visit with her post-surgery was the scariest sight of my life.  To see my baby with rows of machines behind a large hospital bed and know that all of those machines had medicine in them that was being pumped into my little girl, was terrifying.  Six days after her birth, we got to hold our little girl for the first time.  Six days after that, we took our precious miracle home,” said her mother.

They met with cardiologists monthly until her second surgery when she was eight months old. Madison’s six-hour surgery was successful and after 11 days in the hospital she finally went home.

They met with her surgeon every 6 months, then one-year visits because her constriction sounded and looked much better.  This year, at her 8-year visit, her doctor has requested a Pulmonary Nuclear Lung Perfusion Scan performed to measure the output between the two branches of her pulmonary artery. They are working with her cardiologists now to tackle the next steps.

“Congenital heart defects can be a lifelong battle. I am very proud today to be able to say that I am the Mother of a Heart Warrior.  She is my hero and I cannot imagine my world without her in it.  Thank you to all of the work that the American Heart Association has done over the years to provide funding for research so that my little girl could still be here today,” said Madison’s mother.
Matthew Burchell 

At four months old, Matthew’s pediatrician believed he heard an “innocent heart murmur.”

An “innocent” murmur is considered harmless and would not require monitoring or intervention.  The doctor was not overly concerned and indicated he would refer us to a pediatric cardiologist if he still heard the murmur at six months.  I pushed for an immediate referral which he was more than happy to give.

On August 22, 2008, to his parents’ surprise, Matthew was diagnosed with two congenital heart defects: a bicuspid aortic valve with mild stIMG_8075enosis and a mildly dilated ascending aorta.

The aortic valve is the valve between the heart and the aorta which prevents the blood from flowing back into the heart. The aorta is the main artery which moves oxygen enriched blood throughout the body. A normal valve has three leaflets. A bicuspid valve only has two. A bicuspid valve can lead to stenosis (blockage) and regurgitation (back flow).  His valve is also susceptible to bacterial infection.

The dilation of the ascending aorta has since progressed and is now considered a stable, thoracic aortic aneurysm.

An aneurysm is when the diameter of a portion of the artery is significantly larger than normal. An untreated aneurysm can lead to dissection or rupture, resulting in a catastrophic incident.

Matthew must be monitored annually to assess both the valve and aneurysm. Unfortunately, there is no medication that can fix either defect.

Matthew is now eight years old. He has not required surgical intervention to date and is not restricted from any day to day activities. He has, however been discouraged from participating in competitive activities such as football, weightlifting, hockey or wrestling which could cause trauma or straining. Physical restrictions may result as he ages and the dilation increases.

Statistically, one in 100 babies is born with a congenital heart defect. In Matthew’s case, boys are three times more likely to be diagnosed with a bicuspid valve than girls.

Approximately 80% of those with a bicuspid valve, also suffer from dilation of the aorta or an aneurysm.

Matthew is on a life-long journey. There is no quick fix. Diligent monitoring of his condition is a must and progression is inevitable.

In the future, any surgical intervention that Matthew will undergo will come with its own risks and maintenance.

That is why his parents support the American Heart Association. Because every day there is more research and studies being conducted that will one day help those like Matthew born with Congenital Heart Defects live their best lives possible.

 www.dutchessulsterheartwalk.org 

Little Red Hats to Raise Awareness for Congenital Heart Defects

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Baby Eliana at Good Sam Hospital

The American Heart Association (AHA), in connection with The Children’s Heart Foundation, is offering the “Little Hats, Big Hearts” program for the second year in a row locally. Thousands of little red hats are being delivered to 26 regional hospitals in New York and Connecticut during February, American Heart Month, to help raise awareness for congenital heart defects, or CHD, the most common type of birth defect in the country. Every baby born at participating hospitals during February will receive a little red hat, and parents will receive healthy lifestyle educational information.

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Danbury Hospital

The AHA received donations from more than 100 volunteer knitting and crocheting enthusiasts in the community to help raise awareness for CHD during Congenital Heart Defects (CHD) Awareness Week, February 7 – 14. American Heart Month aims to raise awareness of heart disease, the number one killer of American men and women.

Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

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Phelps Hospital

The AHA put a call out to knitting and crocheting enthusiasts in December, and little red hats came pouring in from all over the region. Approximately 2,500 hats will be distributed. Local yarn shops donated red yarn and Fabricare Cleaners in Norwalk and Red Cap Cleaners in Poughkeepsie donated their services to wash and sanitize the hats.

“We hear these heart-warming stories shared by some of the knitters who were donating hats in memory of a child lost to CHD, or happier, one who lived. The American Heart Association funds pediatric research and we offer healthy lifestyle programs for children in schools throughout the county,” said Carolyn Torella, AHA spokesperson, “We’re so grateful for the community’s generosity and support to help raise awareness for children’s heart health.”

The American Heart Association is committed to raising awareness for CHD, and helping children live stronger lives through education, research and public policies. In fact, the organization’s funding for pediatric cardiac research is second only to the federal government. Thanks to AHA advocacy, laws were passed in CT and NYS to ensure that every baby born receives pulse-oximetry testing, which can help identify heart defects immediately after birth. The AHA also creates guidelines for, and trains parents, caregivers and medical professionals in infant and child CPR.

More information about the Little Hats, Big Heart program is online at www.heart.org/littlehatsbighearts or by contacting the AHA at 845-867-5374. Learn more about congenital heart defects at www.heart.org/CHD. Parents of children with CHD may find support online at the AHA’s new Support Network at http://supportnetwork.heart.org/

Thanks to all our knitting & crocheting volunteers and to all our participating hospitals who give all their hearts to care for newborns! 

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Good Sam Hospital

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White Plains Hospital

Volunteers Rally to Support American Heart Association

Marist College welcomed volunteers from over 50 local companies and organizations for the American Heart Association’s (AHA) annual Heart Walk volunteer rally and kickoff event.

Vince Amodeo, Business Banking Regional Manager at M&T Bank for the Hudson Valley, will serve as Heart Walk chair for 2017 Heart Walk. The event is the American Heart Association’s biggest annual fund raiser.img_6855

Amodeo encouraged volunteers, team leaders, businesses and community leaders to sponsor and form teams to join the Heart Walk. Two events will be held locally. The Dutchess Heart Walk will be held on March 25th at a new location, Marist College, and the Ulster event is set for April 2nd at SUNY New Paltz. Registration online at www.dutchessulsterheartwalk.org.img_6864

“I know my support of the Heart Walk will insure that the AHA’s good work continues and by walking, I will be creating a healthier me and a healthier community,” said Amodeo, “Residents can join the Heart Walk to support a family member or friend, or for their own hearts. Every step, every dollar raised helps the American Heart Association’s mission.”

According to the AHA, walking briskly can lower your risk of high blood pressure, high cholesterol and diabetes as much as running. Adults need 30 minutes of physical activity per day, at least 150 minutes of moderate activity per week or 75 minutes of vigorous activity per week for heart health. Kids need 60 minutes daily.

img_6883Madison Dallies & Matthew Burchell are serving as the 2017 Heart Walk Youth Honorees – both are survivors from congenital heart defects.

Events like the Heart Walk fund the AHA’s critical research and awareness programs that help save lives from cardiovascular diseases like heart disease and stroke – the number one and five killers in the U.S. Thanks to progress made in awareness, early intervention and research, stroke has moved from the #3 killer to the #5 killer in recent years.

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L to R: Vince Amodeo, Heart Walk Chair, Beth Christy, Townsquare Media, David Ping, Health Quest, AHA Board Chair with youth honorees Madison & Matthew

Companies interested in supporting the Heart Walk with sponsorship or teams should call Jaclyn Renner, Event Director, at the American Heart Association at (845) 867-5378 or by email jaclyn.renner@heart.org. Event info and registration for teams and individuals is online at www.dutchessulsterheartwalk.org.

Health Quest is the 2017 “My Heart, My Life” sponsor. M& T Bank will be Tribute Wall sponsor. Rondout Savings bank is the Ulster County CPR in school’s  sponsor. Other Local Sponsors for this year’s event are: Adams Fairacre Farms, Laerdal Medical, UnitedHealthcare, Ellenville Regional Hospital, Marshall & Sterling and Premier Medical Group. Media sponsors include Townsquare Media, Mix 97.7, Southern Dutchess News and Hudson Valley Magazine.

By |January 12th, 2017|Categories: Uncategorized|Tags: , , , , , |0 Comments