Cora’s Law and Why It’s Important

December 17, 2013
Hosted by Anna Jaworski

[Download MP3] [itunes] [Bookmark Episode]

Guest Information


[View Guest Page >]

[View Guest Page >]

[View Guest Page >]

[View Guest Page >]

Episode Description

Although congenital heart defects are the number one birth defect, typically newborns have not been screened for heart defects before leaving the hospital. This has tragically led to some newborns passing away from undiagnosed congenital heart defects, sometimes in their mother’s arms. This was the case for Kristine McCormick when her seemingly healthy daughter Cora passed away in her arms. It wasn’t until Kristine received the autopsy report that she realized Cora was born with a severe, congenital heart defect. Vowing to do all in her power to prevent another mother from experiencing her pain, Kristine joined forces with Annamarie Saarinen and others to petition her state to conduct a simple, non-invasive test to detect some of the deadliest heart defects in newborns. Tune in to this episode of Heart to Heart with Anna to find out how these moms on a mission have been able to convince lawmakers to pass legislation requiring pulse oximetry for newborns and what the results have been.

Heart to Heart with Anna

Heart to Heart with Anna

Archives Available on VoiceAmerica Health and Wellness Channel

Heart to Heart with Anna is a program specifically for the congenital heart defect or CHD community. Our show will address issues of concern to the CHD community. Topics revolve around some of the special needs of the child born with a CHD, how to become an advocate for the CHD child, parent and CHD survivor and what it means to be part of the CHD community. The show addresses issues of concern to the CHD community. Members of the CHD community will serve as Guests to share stories to encourage others. While the topics will be especially pertinent to the CHD community, they also have a broader appeal to any community dealing with chronic illness since many of our topics are faced by other communities dealing with chronic illnesses.

  • Snag
  • ecard
  • Bookmark and Share
Anna Jaworski

Anna Jaworski

Anna Jaworski is the mother of a son with a severe congenital heart defect (CHD). Alex endured two open-heart surgeries in his first year of life. His surgeon told parents Anna and Frank that Alex was born with hypoplastic left heart syndrome a.k.a. HLHS. Alex underwent a revision of his last surgery at age 17 and had a Maze Procedure to stave off future arrhythmias.

With a lack of information for parents, Anna decided to write a book about HLHS and start a publishing company for the CHD community. She also helped start a support group for CHD parents in Central Texas and became a public speaker. Joey, Anna’s heart-healthy son, inspired her to write a second book, My Brother Needs an Operation. After a while, Anna started sharing stories with other CHD parents to educate and inspire them. Encouraged by these parents, Anna then became the editor of two books, The Heart of a Mother and The Heart of a Father. The books provide hope, encouragement, and support to the CHD community.

Anna has been a public speaker for many CHD events. She is a Distinguished Toastmaster, earning the highest level of communication and leadership awards Toastmasters offers. Anna has given speeches all over North America.

With a B.A. in speech pathology and MEd in curriculum and instruction, Anna helped Alex after he suffered a stroke and vocal cord paralysis following his second surgery. She also homeschooled her two sons. Anna still loves to teach and share stories with others.

  • Snag
  • ecard
  • Bookmark and Share

Episode Directory

March 2014

February 2014

January 2014

Bryce Bagwill

I am a 43-year-old father of two. I work at Joyce Meyer Ministries and for a media consulting company I helped start called 1303 Systems. This is a business I started to make up for my wife’s lost income since she stays home with our daughter. Sophia was born full term in January of 2010. Sophia had multiple procedures to attempt to open up her pulmonary valve before it was replaced at 11 months of age. The same problem with her circulatory system also caused problems for her lungs and liver and she had to have a liver transplant at 16 months. In caring for Sophia, my wife and I have had to witness, and even inflict, a lot of pain. This trauma has been very hard on all of us. I have been treated for Post Traumatic Stress Disorder. I am a member of the St. Louis Children’s Hospital Parental Advisory Board. View Guest page

Episode Listing:

Amy Basken

Amy Basken was thrust into the world of congenital heart disease, or CHD, 9 years ago with the birth of her son, Nicholas. The first 3 days of his life included 3 hospitals, a helicopter ride and heart surgery to repair a severe coarctation of the aorta. While Nicholas was an infant, Amy told her story to lawmakers in Washington DC. She then realized the power of the individual story, and the positive impact it can have on others. Amy has led congenital heart disease advocacy efforts for many of the largest national CHD organizations and coalitions. Her accomplishments include the introduction, passage and funding of the Congenital Heart Futures Act, the development and growth of the Congressional Congenital Heart Caucus, as well as coordinating national messaging for the Critical CHD Screening movement. Amy recently became President/CEO of the Pediatric Congenital Heart Association, which will unite and amplify the voices of those in the Heart World. Please visit www.conqueringchd.org. View Guest page

Episode Listing:

Lauren Bednarz

I am a 26-year-old congenital heart defect survivor born with tricuspid atresia, and a hypoplastic right ventricle. I basically have half a functioning heart and am currently 23 years post-Fontan. I was also born with congenital scoliosis and an eye muscle disease. I have been through two open-heart surgeries, three eye muscle surgeries, and the list goes on. From a young age I had anxiety about many things. I was called a "worry wart." As I got into my teenage and adult years, my anxiety got to the point of anxiety attacks. I feel that having a chronic illness played a big role in my anxiety and that it influenced my desire to earn a degree in psychology. I am in the process of becoming a child life specialist on the cardiac floor as I feel I can relate to young heart patients in the hospital who are scared or have anxiety. View Guest page

Episode Listing:

Dr. Dudley Woodrow Benson

Dr. Benson, Professor of Pediatrics and Director of Pediatric Cardiac Research at Children’s Hospital of WI, Medical College of WI, attended medical and graduate school at Emory University. He obtained a PhD in Biomathematics and Biomedical Engineering at the University of NC-Chapel Hill and an MD from Duke University. Pediatric residency and cardiology fellowship were completed at Duke Medical Center. Early in his career, he pursued interests in cardiac electrophysiology and introduced this discipline to pediatric cardiology. In 1986, he became Director of Cardiology at Children’s Memorial Hospital, Northwestern University. In mid-career, under the auspices of a NIH Senior Fellowship, he trained to become an investigator in the molecular genetics of pediatric heart disease subsequently pursuing patient-oriented genetic research. Dr. Benson’s investigations identified the role of mutations in pediatric heart disease and established bicuspid aortic valve as a complex genetic disorder. View Guest page

Episode Listing:

Jeni Busta

Jeni Busta is a 28-year-old survivor. She was diagnosed before birth with hypoplastic left heart syndrome or HLHS. In 1985 Jeni’s medical professionals knew no other older survivors. It was a miracle that Jeni survived. She was the first HLHS baby from UCLA Medical Center to make it. Jeni underwent her first open-heart surgery her first day of life and her second surgery, the Fontan, at 17 months of age. When she was 3 years old, she received a pacemaker. Since then she has had several procedures including pacemaker battery replacements and catheterizations. Growing up with a CHD was difficult since many of Jeni’s peers didn’t understand what made her heart different. She appeared healthy but she was functioning with only half a heart – something nobody could see. She is currently happily married and living in California. She reaches out to CHD families all over the world to give them hope. She tells HLHS families that her faith and dependence on Christ is what keeps her going everyday. View Guest page

Episode Listing:

Jessica Cowin

Eileen Pearlman and Jessica Cowin: Eileen has two daughters, Jessica and Amy Cowin. While pregnant with Jessica, she thought everything was fine. Jessica was born on June 7, 1983. Doctors began monitoring her heart due to an irregular heartbeat. Three days later, after extensive testing, she had emergency surgery because she had hypoplastic left heart syndrome. By 13, she had had all of the palliative surgeries and a revised Fontan because her heart was failing. In August of 1999, Jessica was listed for a heart transplant. Being listed at home meant it could take 6-12 months to get a heart; however, on September 25, 1999, we were called to the hospital for a new heart! She received the heart of a local fifteen year old. At 26 she was told that the doctors could not do a routine catheterization because her creatinine (kidney) levels were too high and it would shut her kidneys down. Her kidneys failed due to her anti-rejection medications. On April 2, 2009, Amy gave her big sister a kidney to save her life, again. View Guest page

Episode Listing:

Mark Cummings

At only 2 months of age it was discovered that I had been born with dextrocardia situs inversus with a single ventricular bilateral cavus L-loop malposition of the great arteries and an atrioventricular septal defect. To put it simply, my heart only has two chambers and it's on the opposite side of my body facing my shoulder blade. When I was 15 I was diagnosed with kyphosis, a severe curvature of the spine that causes one to have a humpback. The condition threatened to crush my internal organs. I had two 18 inch steel rods bolted to my spine to correct the problem. As a young child I was also diagnosed with attention deficit hyperactivity disorder. I was prone to lashing out, never knowing where to put my energy. It was easy to have thoughts of loathing and self-doubt. I didn’t fit in anywhere or have a group of true friends but instead of having a negative attitude, I walked into a small karate school in Central New York called Brooks Karate. That was the best decision I ever made. View Guest page

Episode Listing:

Stephanie Gannaway

Stephanie Gannaway is Heart Mom to son Bodie, now two, who was born with a congenital heart defect called tetralogy of Fallot. He had open-heart surgery to repair the defect at six months old. The initial repair was not successful and he spent 100 days in the Pediatric Intensive Care Unit after the initial repair with total systemic failure (his organs shut down). At the end of those 100 days, he survived a catherization procedure, 16 surgeries, extra corporeal membrane oxygenation or ECMO, five cardiac arrests, a foot amputation and an anoxic brain injury from lack of oxygen during cardiopulmonary resuscitation. Recovery from an anoxic brain injury is uncertain. Bodie’s life is about therapies now. He has 12 therapy sessions per week including hyperbaric oxygen, which is experimental for brain injuries. There is not much information regarding pediatric anoxic injuries related to congenital heart defects, and we have chartered new territory the last two years on this subject. View Guest page

Episode Listing:

Dara Glagola

Dara Glagola is a nurse, the mother of 2 daughters, Rhianne and Jara and grandmother of Trevor Kaine. Jara was born in 1978 with multiple complex heart defects and other defects including dextrocardia, situs inversus, hypoplastic left heart syndrome, pulmonary atresia and malrotation of the intestines. When she was 8 hours old, the doctors gave her a Blalock-Taussig shunt and she had multiple surgeries after that, including a spinal fusion surgery for severe scoliosis. Dara’s second daughter, Rhianne, was born in 1982 and although they were assured she was healthy, later it was discovered she also has heart problems. Jara, proud of her scars, was a champion for those born with heart defects. She was the spokesperson in PA and FL for the AHA Heart Walk. She married Jeff Gilbert in January 2006 but just a year and 10 days later, while awaiting pacemaker surgery, she passed away at 28 years of age. Nothing ever prepares a family for that nightmare. View Guest page

Episode Listing:

Dr. Dawn Ilardi

Dr. Dawn Ilardi is a senior pediatric neuropsychologist at Children's Healthcare of Atlanta and Sibley Heart Center. She specializes in working with children who have complex CHDs requiring cardiac surgery or transplantation. Her focus is the assessment of children's abilities, including cognitive, emotional, and social functioning thus helping families and schools understand each child’s strengths and weaknesses. She makes recommendations to support children's needs. She also works with children before discharge from the hospital addressing family’s concerns and facilitating the transition back to school. Dr. Ilardi and other professionals from leading children’s hospitals are building developmental follow-up programs for children with CHDs to make sure they get the necessary assessment and intervention support needed from infancy to young adulthood. Dr. Ilardi collaborates with others to collect research to better understand the needs of children and young adults with CHDs View Guest page

Episode Listing:

Alex Jaworski

I was born on August 11th, 1994. I was diagnosed with hypoplastic left heart syndrome when I was two months old, and the doctors told my parents that the odds of me surviving surgery were extremely small. Despite that, I had my 1st surgery within days, and my 2nd surgery when I was nine months old. I didn’t need surgery again until I was 17 years old, when my Fontan was converted to an extra-cardiac Fontan. My father and older brother both did karate since I was little, so I started doing it when I was six. I continued until I was ten, after earning my Black Belt. At that time, I was getting into robotics, and participated with teams in annual FIRST LEGO League and Robofest competitions. For a few years, when I was a teenager, I joined the local swim team with my brother. I also went to rock climbing gyms with my friends periodically, and I took tennis lessons at a country club. As an engineering student at NYU-Poly I now exercise by walking across the Brooklyn Bridge every day I can. View Guest page

Episode Listing:

Frank Jaworski

I am the father of two sons, Joseph who is 22 and heart healthy and Alexander who is 19 and was diagnosed after birth with HLHS or hypoplastic left heart syndrome. My wife Anna and I went through two open-heart surgeries with Alex before his first birthday and a third when Alex was 17. We have been happily married for 27 years. We live in central Texas where I work as a Certified Registered Nurse Anesthetist. My wife Anna is the author and publisher of several books written for the congenital heart defect (CHD) community and I have assisted her as illustrator and editor. I am also the Vice President of Baby Hearts Press and the Vice President of the nonprofit organization that we founded called Hearts Unite the Globe. I am an avid supporter and advocate for the congenital heart defect community. View Guest page

Episode Listing:

Joey Jaworski

Joey Jaworski is the oldest son of Frank and Anna Jaworski. When he was one year old he started begging his parents for a baby brother. Having two female cousins his same age, Joey felt outnumbered and he wanted to even things out. When his mother told him that God might give them a sister, Joey said, “Don’t worry, Mom. Dad works at the hospital. If we have a girl, Dad can just switch it for a boy before we come home.” Clearly, Joey was determined to have a little brother. Right before Joey’s third birthday, Alexander Jaworski was born. Little did anyone know that Alex was born with a serious, congenital heart defect. Within Alex’s first year of life, he had 2 open-heart surgeries in a hospital 3 ½ hours from their home. Joey’s world was turned upside down. Alex then had another open-heart surgery when he was 17 and Joey was 20 years old. View Guest page

Episode Listing:

Kathy Keller

Kathy Keller: My 16-year-old son Garrett is a heart transplant recipient. He was born with hypoplastic left heart syndrome, which required several open-heart surgeries. He did well but had complications including a significant stroke. When he was 12 his heart failed and he was listed for transplant. After two years he finally received his gift of life on his 14th birthday in 2011! During his wait and recovery, we had to split the family across two states. As the family breadwinner, I continued working to support us. My husband Dennis and I saw each other for 15 minutes twice a week while we switched who was with Garrett in Philadelphia and who was with our younger son in Virginia. We did this for 7 months because Garrett’s recovery was full of complications. He spent 12 weeks in the Intensive Care Unit as well as 8 weeks in inpatient rehabilitation. Garrett is a fighter and though he has deficits from both his first stroke and his difficult recovery he is doing amazingly well. View Guest page

Episode Listing:

Jodi Lemacks

Jodi Lemacks discovered, five months into her pregnancy that her son would be born with a severe heart defect that would require a complex operation as soon as he was born. Thus, before Joshua was even born, Jodi and her husband Mark were thrust into the roles of advocates for their son. First they fought with medical policies and their insurance company. Now Jodi is fighting as an advocate in a different way. As the National Program Coordinator for one of the largest pediatric congenital heart defect support groups, she has become a strong advocate. Mended Little Hearts has worked together with The Children’s Heart Foundation, the American Heart Association, and the American College of Cardiology’s CardioSmart Program to spread awareness of educational issues of importance in the heart world, to help raise money for pediatric congenital heart defect research and to spread awareness of CHDs. Jodi also sits on the Executive Committee for the Congenital Heart Public Health Consortium. View Guest page

Episode Listing:

Leah Lowrey

My name is Leah Lowrey. I’m a mother of five, two which are in heaven. I have one girl and four boys. I am a funeral director/embalmer and work part-time at Greater Jackson Mortuary. I am the founder of Praying Hearts, which is a Christian support group for heart families. I have served as the co-coordinator for Mississippi Mended Little Hearts. I spend lots of time working with heart families and fundraising for Mississippi’s Batson Children's Hospital. It was a passion given to me after my journey with my son, Pierce, was born with critical aortic stenosis. We lost Jonathan when he was three years old. He was killed in a car accident in 2003. Then we lost Pierce at 3 months of age when he lost his fight with his congenital heart defect on January 15, 2010. My marriage wasn’t able to withstand so much loss. I have since remarried a wonderful man, Rodney Lowrey, who is supportive of all of my efforts to help other families. View Guest page

Episode Listing:

Vicki Lucas

Vicki Lucas is a Special Education Teacher and mom to teenage sons: 14-year old Ian, 16-year old Alex, and 18-year old Zach. Vicki and Steve have been married 20 years, weathering the challenges and thrills of raising three sons, including a child with a complex congenital heart defect. Over 15 years of classroom experience and private tutoring have given Vicki insight into the challenges and learning styles of special needs students. Alex was born with hypoplastic left heart syndrome (HLHS). He has had 4 open-heart surgeries and multiple catheterizations. Alexander has seen the gamut of learning environments from specialized preschool, Language Learning Development, Self-Contained, Resource Room, In-Class Support; culminating in a 504 Status. For a child expected to use a Picture Exchange Communication System or PECS Communication System, Alex has since progressed to Honors and Talented and Gifted classes. Alex is planning to attend college! View Guest page

Episode Listing:

Gerald R. Marx, MD

Gerald R. Marx, MD is a cardiologist at Boston Children’s Hospital and is internationally recognized for his contributions to patient care and medical education. A devoted physician, he cares for children with the most complicated heart defects. He is the author of over 180 peer-reviewed publications, chapters of books, reviews and editorials. As teacher, he has lectured nationally and internationally, and has taught generations of cardiology fellows the art and science of echocardiography. Dr. Marx is especially renowned as a pioneer in 3-D imaging of congenital heart disease. Marx has also been a tireless volunteer for the American Heart Association (AHA). The AHA gave him the Paul Dudley White Award at the 2012 Boston Heart Ball. Named in honor of one of Boston’s most revered cardiologists and a founding father of the American Heart Association, it is the most prestigious tribute given by the AHA’s Founders Affiliate and is bestowed annually on a Massachusetts medical volunteer. View Guest page

Episode Listing:

Nancy and Jess McCain

Nancy and Jess McCain: We are the grandparents of Samantha McCain. She was born on March 1, 1997. We found out when she was two days old that she was born with hypoplastic left heart syndrome. She had her first open-heart surgery when she was four days old, the second when she was nine months old and her third surgery when she was five years old. All of this was a very emotional time for all of us. We as grandparents had to stand back and let her parents Steve and Pam McCain make all the decisions about her care. Quilting was a way for me to cope. When we were asked to help with the Congenital Heart Defect Awareness Quilts we accepted and help make the first quilt and have gone on to make seventy-five more so far. Samantha is now a junior in high school. She is on the swim and golf teams. View Guest page

Episode Listing:

Kristine McCormick

Kristine McCormick states that within weeks of her daughter’s death, her role became clear. She would speak for babies without a voice. She would help their mamas. Kristine has been a proud advocate of newborn health since 2009. Her focus has largely been on newborn heart screening or pulse oximetry. She successfully advocated for legislation in her home state of Indiana, which made pulse oximetry law in April 2011. She has helped other parents in other states work to make pulse oximetry the standard of care practice in their states as well as through her grassroots organization Pulse Ox Advocacy. Kristine’s current interests are screening for congenital heart defects before and shortly after birth, newborn screening and any issue that affects the health of infants from conception through the first year of life. View Guest page

Episode Listing:

Tara McFadden

Tara McFadden was born on February 3, 1992 with hypoplastic left heart syndrome. She has had 3 open-heart surgeries and spent a total of 2 years in the hospital when considering all three of her surgeries. Since her Fontan, Procedure, Tara has been able to do things just like heart-healthy children. She graduated from Ramapo High school in 2011 and is currently attending Ramapo College in NJ where she is working toward a degree in Social Work. Tara has had physical limitations just about all of her life. She cannot play competitive sports but she still swims and can do other activities like baking, watching historic films and taking photographs. In 5th grade, Tara was diagnosed with a processing disorder. This makes reading long passages or doing complicated math problems especially difficult for her. Despite her difficulties, she has found ways to overcome her problems. An active advocate in the congenital heart defect or CHD community, Tara supports Little Hearts and the CHD Coalition. View Guest page

Episode Listing:

Don Meyer

Don Meyer is the director of the Sibling Support Project. Don is probably best known for creating Sibshops, lively programs just for young brothers and sisters of kids with special needs. Don also created SibKids and SibNet, no-cost listservs for young and adult brothers and sisters, which allow hundreds of siblings from around the world to connect with their peers. Don was a founder of the Supporting Extended Family Members program at the University of Washington, which pioneered services for fathers, siblings and grandparents of children with special needs. Don is senior author or editor of six books: • Sibshops: Workshops for brothers and sisters of children with special needs • Uncommon Fathers: Reflections on Raising a Child with Special Needs • Living with a Brother or Sister with Special Needs: a Book for Sibs • Views from our Shoes: Growing up with a brother or sister with special needs • The Sibling Slam Book • Thicker than Water: Essays by Adult Siblings of People with Disabilities View Guest page

Episode Listing:

Monica Mossey

Monical Mossey: Monica Mossey was born on September 6, 1984 with Truncus Arteriosus Type II. She has had 3 open-heart surgeries and is currently 29 years old. Monica has dealt with feelings of fatigue and lethargy all her life. Throughout her life she has needed oxygen, wheelchairs and other assistive devices. Her dependence on this equipment has not deterred her from living a full and quality life. She graduated from high school with honors and earned an Associate’s Degree in Business with honors. At 3 years of age Monica was fitted for bilateral hearing aids. She has a severe-to-profound hearing loss but thanks to 4 years of speech therapy, her speech is easily understood. Now cochlear implants allow Monica to hear better than her hearing aids ever did. Monica enjoys being in the presence of her close-knit family and friends. She loves all of God’s precious animals, especially her cat Levi. Monica is hopeful about the future and looks forward to using her college degree with part-time employment. View Guest page

Episode Listing:

Dr. Jane Newburger

Dr. Jane Newburger received her Medical Degree from Harvard Medical School and her Master’s in Public Health from the Harvard School of Public Health. She trained in pediatrics then cardiology at Children’s Hospital Boston. She joined the faculty of the Department of Cardiology as Instructor in Pediatrics and advanced over the next 19 years to Professor of Pediatrics at Harvard Medical School and Associate Chief for Academic Affairs in Cardiology at Children’s Hospital Boston. Dr. Newburger served on the National Heart Lung Blood Institute Advisory Council and is no Senior Editor of Circulation. She has made fundamental contributions with major impact on clinical practice in two fields: neurological and developmental outcomes after pediatric cardiac surgery, and evaluation and therapy of Kawasaki disease. She has received numerous awards and is a prolific author. She maintains an active practice comprised of patients with congenital and acquired heart disease. View Guest page

Episode Listing:

Lisa O'Connor

Lisa O'Connor is a Special Education Advocate representing children and their parents as they navigate through special education. She lives in the greater Boston area and received her training through the Federation for Children with Special Needs. She is also a Court appointed Special Education Surrogate Parent, representing children in State custody, overseeing their education. Through her experiences she has met many families of children with heart defects seeking guidance due to developmental delays, learning disabilities and the need for accommodations. She has found rewarding pathways that enable children to fully access the school environment. She is well versed in Special Education Law, Individualized Educational Plans, Accommodations and Individual Health Care Plans, all of which students are entitled to. Through her advocacy, she aims to share her knowledge and experience with the heart community. She can be found on Facebook at: "Special Education Collaborative Consulting." View Guest page

Episode Listing:

Eileen Pearlman

Eileen Pearlman has two daughters, Jessica and Amy Cowin. While pregnant with Jessica, she thought everything was fine. Jessica was born on June 7, 1983. Doctors began monitoring her heart due to an irregular heartbeat. Three days later, after extensive testing, she had emergency surgery because she had hypoplastic left heart syndrome. But nine years before Jessica was born, Eileen was already a practicing Speech/Language Pathologist. She began her career as a Speech/Language Pathologist in 1974 and she works primarily with students who have special or multiple needs. View Guest page

Episode Listing:

Eileen Pearlman

Eileen Pearlman and Jessica Cowin: Eileen has two daughters, Jessica and Amy Cowin. While pregnant with Jessica, she thought everything was fine. Jessica was born on June 7, 1983. Doctors began monitoring her heart due to an irregular heartbeat. Three days later, after extensive testing, she had emergency surgery because she had hypoplastic left heart syndrome. By 13, she had had all of the palliative surgeries and a revised Fontan because her heart was failing. In August of 1999, Jessica was listed for a heart transplant. Being listed at home meant it could take 6-12 months to get a heart; however, on September 25, 1999, we were called to the hospital for a new heart! She received the heart of a local fifteen year old. At 26 she was told that the doctors could not do a routine catheterization because her creatinine (kidney) levels were too high and it would shut her kidneys down. Her kidneys failed due to her anti-rejection medications. On April 2, 2009, Amy gave her big sister a kidney to save her life, again. View Guest page

Episode Listing:

Kristi Pena

Kristi Pena is currently a stay-at-home mom and caregiver to her youngest son Christopher. He was born in heart failure and given less than 6 months to live. He lived under hospice for 15 months until the discovery of a miraculous improvement. He has continued to do well despite the odds. Kristi volunteers for Barth Syndrome Foundation, The Children's Miracle Network Hospital Blair E Batson Hospital for Children, and several other various causes. She helps new families by sharing her knowledge in resources and advocacy. She has written for Complex Child e-Magazine and guest blogged. She has met with various politicians advocating for congenital heart defects and rare disease. Kristi's family makes various appearances for Children's Miracle Network, traveling to Orlando and Washington DC. They've also been in countless news articles sharing their incredible story. View Guest page

Episode Listing:

Anthony Pugliese

Anthony Pugliese: I was born in 1964 with a single ventricle heart, pulononary stenosis and transposition of the great arteries. I had my first open-heart surgery at age 10 months, my second at age 14 and my third and final open-heart surgery at age 20. At age 33 I developed atrial fibrillation but thanks to medications I suffered no problems until age 44. That’s when I started to become weaker. I was placed on the Heart Transplant List on January 26 2009 and received my new heart on March 26 2009. I served on the Board of Directors for 8 years for the Adult Congenital Heart Association. I currently volunteer at CORE - center for organ recovery and education. I am also a founding committee member of a heart transplant support group in Pittsburgh and am a member of the Pittsburgh Transplant Olympic Team. I feel great and count each day as a blessing and I owe it all to a young man who signed an organ donor card. View Guest page

Episode Listing:

Jennifer Reed

Jennifer Reed is the Coordinator at Mended Little Hearts of Dallas, Texas. Jennifer Reed is currently a senior at the University of Texas at Tyler and a special education instructional aide at Canton High School, in Canton, TX. She is a mother of two girls – Adeline, 5 years old and healthy, and Olivia, 18 months old with hypoplastic left heart syndrome, coarctation of aorta, bilateral superior vena cava, arthrogryposis, scoliosis, gatroesophageal reflux disease or GERD, reactive airway disease, chronic lung disease, and 22q11.2 distal deletion. Jennifer’s geneticist has been working hard with her to establish a genetic connection between her daughter’s heart defect and a genetic condition in her family. Their chromosomal deletion is extremely rare and Dr. Schurele is working on determining if there is a genetic connection between hypoplastic left heart syndrome and arthrogryposis. View Guest page

Episode Listing:

Callie Rickard

Callie Rickard: I am a wife and stay-at-home mom to Diana, Alex, and DJ. After a normal pregnancy, we welcomed DJ into the world on June 23, 2003. DJ was diagnosed with hypoplastic left heart syndrome at two days old, and then later Shone's Complex with severe pulmonary hypertension. DJ has had seven open-heart surgeries, (five before his first birthday), one at age two and his last one at age seven. He’s had four aortic and mitral valves replaced. He received the smallest mechanical mitral valve ever placed in a baby. In 2010 a heart and double lung transplant was recommended but DJ was considered too high risk. After his last open-heart surgery, he suffered a massive brain hemorrhage requiring two brain surgeries. He recovered and looks like any other normal, healthy boy. Recently our family moved from Washington to Texas pursuing better health care, new job opportunities and a little adventure. View Guest page

Episode Listing:

Jon Ritchings, Jr.

Jon Ritchings, Jr. is a 42-year-old father who was born with pulmonary atresia and a small but functional right ventricle. He has had three open-heart surgeries and over 30 cardiac catheterizations. Thus he has had a repaired valve, a replaced valve, part of his heart removed and an implantable cardioverter-defibrillator or ICD placed in his heart to make his heart beat. In his time he has had more than a few opportunities to advocate for his own health. More recently, in 2013, he attended an Advocacy Day function in Washington, D.C. representing not only himself, but others in the CHD community. He has also written letters to his Congressmen and Senators. He uses his personal Facebook page to promote CHD awareness and also shows how he lives a “normal” life. He monitors a Facebook group called Adult CHD Patients Answering CHD Parents’ Questions. Its aim is to help parents understand what it’s like growing up with a CHD and to help them advocate for their children’s health. View Guest page

Episode Listing:

Angela Roberts

In 1979 Angela Roberts was pregnant with twins when one of them passed away a few minutes after birth. Being told she had a stillborn child was so painful that Angela couldn’t cope and she blamed herself for Natasha’s death. Angela was afraid she had done something wrong. Perhaps even more hurtful was how everyone seemed to deny Natasha ever existed. In trying to regain control over her emotions and her life, 25 years later she found out the hospital did an autopsy on her baby and had kept her organs without Angela’s permission. She discovered other babies had also been kept without the parents’ knowledge. This resulted in her starting an organization called “I Have Rights, Too” which is a support group for parents who had a stillbirth or loss of a baby. View Guest page

Episode Listing:

Dr. Amy Roberts

Dr. Amy Roberts is a cardiovascular geneticist and researcher. She is also an Assistant Professor of Medicine at Boston Children’s Hospital. She is board certified, specializing in Medical Genetics. She graduated from Dartmouth Medical School, completed a residency in pediatrics at the University of Massachusetts Medical Center and then completed a second residency in Medical Genetics at Harvard Medical School in 2004. Dr. Roberts is a published author, having articles published in peer-reviewed journals. She has done research specifically addressing Noonan Syndrome, Barth Syndrome, dilated and hypertrophic cardiomyopathy, and Potocki-Lupski syndrome. She has also done other research into the genetic causes of congenital heart disease. She is on the Medical Advisory Board for Cardio-Facio-Cutaneous Syndrome International and The Noonan Syndrome Foundation. View Guest page

Episode Listing:

Caitlin K. Rollins

Caitlin K. Rollins is a fellow in behavioral neurology at Boston Children’s Hospital. She attended college at Harvard University and medical school at the University of PA. She remained in PA for pediatrics residency then moved to Boston Children’s Hospital for pediatric neurology training. She is a member of the Cardiac Neurodevelopmental Program where she sees children with congenital heart defects or CHDs for neurological follow-up, focusing on issues like motor impairment, developmental delay, attention deficit hyperactivity disorder and learning disabilities. Her research focuses on elucidating the biological bases of neurodevelopmental impairments in CHD survivors. Her research has evaluated the relationship between brain MRI findings and neuropsychological performance in adolescents with CHDs. Currently she is focused on understanding the influence of prenatal factors on brain development and CHDs. She hopes someday to minimize the neurological sequelae of being born with a CHD. View Guest page

Episode Listing:

Laura Ryan

Laura Ryan was the oldest of four children when her little brother, Carl, was born. The siblings were all three years apart so Laura was 12 years old when Carl was born and she also had a brother who was 6 years old and another one who was 9 years old. Unfortunately, when Carl was born, the family immediately realized something was wrong, but nobody knew how bad things were until Carl was sent to Texas Children’s Hospital in Houston -- 100 miles from their home. Carl was born with a serious heart defect known as total anomalous pulmonary venous return or TAPVR. Since Laura’s little brother, Carl, was born in the 1950s, he is now one of the oldest TAPVR survivors in the United States. View Guest page

Episode Listing:

Annamarie Saarinen

Annamarie Saarinen is a Humphrey Policy Fellow and the co-founder of the Newborn Coalition, focused on leveraging health information technology (IT), med-tech and biotech to improve outcomes and reduce disparities for infants. She serves in an advisory capacity for multiple states in health IT policy and standards and is recognized for spearheading the federal effort to add congenital heart defects to the universal newborn screening panel in the United States. She also serves on the National Birth Defects Prevention Network, the Pediatric Device Innovation Consortium, and the March of Dimes Public Affairs Committee. The recipient of the renowned Betty Hubbard Maternal and Child Health Leadership Award, she has co-authored several manuscripts on the importance of technology in advancing early detection and treatment of pediatric illnesses, diseases and disorders. Annamarie has three children, including a daughter diagnosed at 48 hours of age with Critical Congenital Heart Disease. View Guest page

Episode Listing:

Dr. Angela Scheuerle

Dr. Angela Scheuerle is a Medical Geneticist: she fell in love with genetics as a sophomore in high school and never looked back. She received her bachelor's degree from Sewanee: The University of the South and her M.D. from the University of South Florida College of Medicine. Dr. Angela Scheuerle completed a Pediatric Residency in Cincinnati, and Genetics Fellowship at Baylor College of Medicine in Houston. Her board certifications are in Pediatrics, Clinical Genetics, and Molecular Genetics. She also completed an Ethics Fellowship at the University of Chicago. Dr. Angela Scheuerle practices at Tesserae Genetics in Dallas, Texas and is adjunct faculty at University of Texas: Southwestern. She helps care for persons of all ages with birth defects, intellectual disabilities, and genetic conditions. She also works in public health genetics at the state and national level, including the process to expand screening of newborns for genetic diseases and birth defects. View Guest page

Episode Listing:

Victoria Scoggins

I was born on March 31, 1983. I was 1 month old before my parents knew I had a heart defect. After confirming I had lost weight, the doctor took a chest x-ray. The next morning, we saw a pediatric cardiologist where I was diagnosed with tricuspid atresia, hypoplastic right ventricle, coarctation of the aorta and ventricular and atrial septal defects. I was also in heart failure. We flew to Houston that night and I had a subclavian repair for my coarctation and my pulmonary artery was banded. The next several years we put off the Fontan Procedure until it was no longer considered experimental and I was older and bigger. Before, having the Fontan I was in ballet, tap and musical performance just like my cousin. I had a hard time keeping up with my peers. In high school I joined the marching band, like my middle brother had done. I marched my Freshman-Junior years. I have a Masters Degree in Health Care Administration and have worked with the Veterans Health Administration for 5 years. View Guest page

Episode Listing:

David Simpson, Ph.D.

David Simpson, Ph.D. has had a 20-year career in Medical Physics. He married his wife Helen in 1997. They have 3 children: Alasdair, Eleanor and Catherine. Alasdair was born with aortic atresia, a variant of hypoplastic left heart syndrome or HLHS. In October 2007 Alasdair developed protein-losing enteropathy or PLE, a potentially fatal condition. Knowing no one else with PLE, Helen and David were frustrated. The heart and intestinal specialists didn’t work together, even though PLE is not uncommon in HLHS survivors. They felt isolated until they discovered the Children’s Heart Fund, which was committed to finding a cure for PLE. David flew to the United States to meet with Dr. Jack Rychik. David asked him questions for two hours about PLE and its in the CHD community. He flew to San Diego and met with Dr. Hudson Freeze. David concluded his trip by flying to New York and meeting with Tom Colson, another heart dad who dealt with PLE and was involved with the Children’s Heart Fund. View Guest page

Episode Listing:

Yasmin Southwood

I am 28 years old and have a heart condition called tetralogy of Fallot. I was also born with a pinhole in my heart. I have had two open-heart surgeries, one when I was 3 and the other when I was 20. When I found out that I was supposed to have another open-heart surgery, I freaked out. My anxiety was very high, and I was slowly having anxiety attacks that eventually led to a nervous breakdown. After my surgery I was very scared to do what I would normally, like roller blade, ride a bike, or even hang out with friends. I will admit I have Survivor's Guilt. I see others with congenital heart defects passing away or struggling and I ask myself why I was allowed to live. My friend lost her 3-year old to a congenital heart defect and I cried saying that it should have been me. I feel terrible about living when others have lost their lives. Sometimes I ask “why me?” It scares me when meeting someone new, starting a new school, a new job because I wonder, “Will they judge me?” View Guest page

Episode Listing:

Sheri Turner

Sheri Turner is 44 and lost her firstborn son Thomas William Turner 16 years ago to hypoplastic left heart syndrome when he was 10 days old. After her son's death in 1997, Sheri organized the first Congenital Heart Defect or CHD Awareness Day in Massachusetts on February 14 of 2000 at Children's Hospital of Boston. After having organized several annual CHD Awareness Days in Massachusetts, she took a hiatus to continue her family. She was beginning a non-profit called the Massachusetts Heart Coalition when her second child, Allison Nicole Turner was born in 1999. Christopher followed in 2003 and Daniel in 2005. Raising her young family has been her focus for the last several years and has been instrumental in her healing journey. For the last couple years her children worked with their schools to collect valentines, blankets and toys for the children in the cardiology units at Children's Hospital of Boston. They also made lanyards for the nursing staff and delivered coffee and muffins. View Guest page

Episode Listing:

Brenda Vignaroli

Brenda Vignaroli: I am the single parent of two daughters, Cara, who is a 31-year-old feisty, healthy-heart young woman and Jessica, 28, born with hypoplastic left heart syndrome. Jessica is the second oldest survivor of HLHS from UCLA Medical Center. I was married during the first two surgeries Jessica endured, the Norwood and then the Glenn Shunt procedures. By the third and final surgery, my marriage began to wane and Jessica's father had left the state and abandoned the family, which forced me to face this most difficult time without a spouse, and Jessica without a father. Forced to go back to work, I spent the next 28 years working in the design department of a major apparel company, Olga/Warnaco in Van Nuys CA. I couldn't have done it without the love, strength and protection from my very loving family who supported and cared for us during those very trying times. View Guest page

Episode Listing:

Brent Waltz

Brent Waltz is an Indiana State Senator and Indianapolis businessman. He represents southern Marion County and northern Johnson County, which comprise the 36th Senate District of Indiana following his defeat of Senate Finance Chairman Larry Borst in the May 2004 Republican primary election. His investment banking company, The Baron Group, Inc. specializes in mergers, acquisitions and capitalization of small-to-mid-size private companies in the transportation and manufacturing industries. Senator Waltz achieved one of the greatest upsets in Indiana political history when he defeated 36-year incumbent and Senate Finance Chairman Larry Borst. Borst was one of the most powerful Indiana politicians of the 21st century. Senator Waltz defeated Borst by 38 votes in the 2004 Republican primary and then easily defeated his Democratic opponent in the November 2004 election and was reelected to a second term in 2008. Subsequently, in 2012 he won reelection for a third term. View Guest page

Episode Listing:

Ben Weisbuch

Ben Weisbuch suffered his first episode of sudden cardiac arrest or SCA on July 18, 2010. His wife Miranda saved his life. Ben spent five days in a coma and underwent heart surgery, but managed to walk out of the hospital under his own power. Over the next three years, Ben survived over 140 separate episodes of SCA. He came close to death several times, suffering sepsis, kidney and liver failure, and six heart surgeries. One night a rabbi prayed over Ben expecting him to die. Genetic testing and research helped save Ben’s life. It also reassured Ben and Miranda that their son would not have the gene that caused Ben’s SCA. Armed with this information Ben and Miranda were able to have more children without fear of SCA. In 2014, Ben and Miranda co-founded the Heart Hope Foundation. They wanted to provide other families with the same access to the best genetic care and preventative medicine available. They wanted to fund genetic cardiac research to eventually eradicate SCA. View Guest page

Episode Listing:

Cindy Weston

Cindy Weston, MSN, RN, CCRN, CNS-CC, FNP-BC began her nursing career in 1989 in the cardiovascular recovery room at St. Luke’s Episcopal Hospital/Texas Heart Institute in caring for infants, children and adults after cardiac surgery and transplantation. She completed her master’s degree in 1995 as a critical care clinical nurse specialist with a research focus on re-warming after cardiac surgery. In 1996 she received the Betty Baker Distinguished Professorship in Cardiovascular Nursing. In 2001, she obtained a post-Master’s Family Nurse Practitioner certification and moved to San Antonio in 2011 where her career has come full circle by returning to the care of infants and children with congenital heart disease. Cindy Weston is a nurse practitioner with the Congenital Heart Program and has served as the nurse practitioner for their Single Ventricle Clinic. She is completing her Doctorate of Nursing Practice with a research focus in improving feeding and growth outcomes in infants with single ventricle physiology. View Guest page

Episode Listing:

Emily Wiebke

Emily Wiebke: I have a wonderful daughter named Aryanna who was born on April 20, 2003. She was diagnosed with dilated cardiomyopathy (where the heart becomes weakened and enlarged, unable to pump effectively) at 7.5 months of age. It was decided she would need a heart transplant. She was hospitalized at University of Iowa Hospitals and Clinics Children’s Hospital for 419 days (356 listed) as she waited for her transplant, which occurred December 31, 2004. During that time I did not work; I was with her all the time. I had never thought about organ donation beyond the ‘Yes’ on my driver’s license before she was listed. Aryanna’s transplant has changed our lives. I have spoken a few times to groups for the Iowa Donor Network; I have always cried. I am a member of Mended Little Hearts of SE Minnesota (even though I live in Iowa). It is sometimes scary to think of the time she will need another heart, but we are ready. View Guest page

Episode Listing:

Kim Willis

Kim Willis is a 32-year-old mother of 3 little ones. She currently works full time as a sales assistant to a financial advisor. Her children are her life: Brooklyn (9), Ethan (7), and Kaden (17 months with HLHS). They live in Terre Haute, Indiana. Kim had no idea of what congenital heart defects were or that they even existed until June 15, 2012. Kaden was born June 14, 2012. He seemed very healthy and the first 24 hours were normal. Kim inquired a few times about his cold, blue feet but was assured that that was normal for newborns. It had been 5 years since she had had a newborn so she accepted that answer. They were set to go home about noon but then it was required for pulse oximetry screening to occur and their plans changed. Because of the results of that test, the doctors realized something was wrong. That one test changed everyone’s lives in Kim’s family! View Guest page

Episode Listing:

Carl Wolford

Carl Wolford: I was born in 1957, the fourth of five children. At four months old I was only the second baby to survive a surgical procedure by Dr. Denton Cooley to correct the heart defect called Total Anomalous Pulmonary Venous Return, or TAPVR. After being near death prior to surgery, the total correction has led to a very active life full of sports (some still continue today), a long-time career as a financial advisor, three children of my own, none of which have any heart defects whatsoever, and a passion for encouraging and helping others affected by congenital heart defects. From that day in the recovery room at Texas Children’s Hospital in Houston, until a pacemaker was installed 18 months ago, I had nothing whatsoever that slowed me down or limited my very active lifestyle in any way. For fifty-four years I needed nothing. Needless to say, Dr. Cooley did good work. View Guest page

Episode Listing: