Heart To Heart With Anna

Send us a textHow can a family deal with the loss of a child? What happens when a surviving child needs a transplant? What advice does a long-time Heart Mom have for other heart families?Bridgett Streacker has been married to her husband Brian for 34 years. They have four children: Jacob 33, Chesna (stillborn), Mallory (their Heart Warrior), and Haleigh 24. As a family, they have gone through many surgeries and obstacles, heartbreak and triumphs, which have made them closer.  Bridgett describes her Heart Warrior as one of a kind, who never let her CHD define her and lives like there is no tomorrow. The family faced one of its biggest challenges during COVID when Mallory had a heart transplant and was allowed no visitors for her entire hospital stay.In this episode, Bridgett and Anna discuss what it’s like to be a CHD family, how they deal with mental health issues, and some advice for other families facing situations such as the ones they’ve faced.Please visit our Heart to Heart with Anna Social Media and Pod

Send us a textWho is Alessandra Lichtenfeld and why did she write a film entitled “Broken Hearts”? What can a heart warrior teach the world about living with a CHD through film? How does a Heart Warrior go from being “fixed” to needing open-heart surgery at 23 years of age?Alessandra Lichtenfeld was born with pulmonary stenosis and has 6 procedures on her heart, starting from when she was 2 years of age. Throughout her life, she has had periods of illness at age 9 and as a young adult. She is a filmmaker and music video director whose work has been showcased in Billboard, Pitchfork, Stereogum, Under the Radar, and more. She received her B.A. from U.C. Berkeley with a double major in psychology and linguistics. She has an MFA in Film and Media Production from UT Austin. She enjoys making surreal, absurdist comedies and dramas about difficult subjects such as bullying and chronic illness. To date, she has directed four films including Broken Hearts, Pixie Sticks, Just Here for the Good Vibes, and Just in My Hea

Send us a textWhy are members of the CHD community more at risk for certain kinds of psychological problems than those outside of the heart world? What makes people more at risk and what can be done about it? Thanks to Covid, people seem more reluctant to leave home for elective medical help so how can people receive treatment within the privacy and safety of their own homes?Amy Bjorkman is the mother to a 17-year-old daughter with a single ventricle heart who has had 6 heart surgeries and spent her first 7 months in the hospital. She is also a licensed psychologist who has specialized in trauma for the last 20 years. She is an expert on how the body holds trauma and the concomitant dysregulation of the nervous system that directly impacts our sense of safety and ability to self-soothe. She works with clients from a somatic perspective to enhance their window of tolerance in managing stress such that they are able to feel more grounded and connected to themselves and others. She has a deep understanding of co

Send us a textWhy would a heart mom work for a CHD organization?  What would prompt a young woman to leave her career and work for the same organization? How does this organization help families affected by CHD?Kate Stacy and Sydney Philpott-Streiff both work at Ollie Hinkle Heart Foundation, a nonprofit committed to year-round support for families and children affected by pediatric heart disease. Kate is mom to six-year-old Stella, born with Hypoplastic Left Heart Syndrome in 2015. She underwent three open-heart surgeries at two days, 4 months, and 3 years of age. In her early months, she was hospitalized frequently with GI issues but has been very active, happy, and healthy since her last OHS. Kate and her husband Adam also have twins born via IVF, Connor, and Ellie, aged 8 years. Sydney was unexpectedly diagnosed with a CHD at age 27. She was on a morning run with her husband Andy when she went into cardiac arrest. Andy performed CPR until paramedics arrived. Sydney was in a coma for 48 hours and needed op

Send us a textAmy M. Le is the guest host for this episode of “Heart to Heart with Anna.” She interviews Anna Jaworski and Megan Tones about their upcoming book “The Heart of a Heart Warrior.” Anna Jaworski became part of the congenital heart defect (CHD) community when her child was born with hypoplastic left heart syndrome (HLHS).  She looked for resources to learn about HLHS, and unable to find anything suitable, she created and shared resources, thus the publishing company, Baby Hearts Press, was born. She has written several books for families and edited two books of essays – one written by heart dads and another written by heart moms called The Heart of a Father and The Heart of a Mother, respectively.  Megan Tones has been on several “Heart to Heart with Anna” episodes over the years. She was born with a VSD and had a pulmonary banding operation at 4 months of age. She had two more surgeries as a child, at age 5 and 10, and one surgery at age 25. Megan works as a researcher and likes to do creative thi

Send us a textHow can Heart Mom use therapeutic techniques to overcome PTSD and CTSD? What is CTSD anyway? What is mindfulness and how can it help someone suffering from traumatic events?Djinni Yancey is the mother of 3 young adult children. Lauren is 23, Brianna is 21, and Isaac is 19. Isaac is a Heart Warrior who was born with a single ventricle heart. In addition to his congenital heart defect, he has other medical issues. Djinni is a US Navy veteran, a recent college graduate (she graduated in Dec. 2020), and she works full-time in PR for the Federal Government. Officially diagnosed with PTSD (or post-traumatic stress disorder) in 2018 after several panic attacks and mental breakdowns. After several months of therapy, Djinni’s therapist suggested she attend a mindfulness group. Fearful of the group at first, it took a lot of encouragement and motivation for her to go, but she has learned that mindfulness is really helpful.Today Djinni and I will be discussing Djinni’s history as a Heart Mom, what PTSD and

Send us a textWhy would it be helpful for parents of adults with congenital heart defects (or CHDs) to have group therapy? What kinds of problems might parents of adult Heart Warriors face? Who provides this specialized kind of therapy?Dr. Smorra is passionate about psychotherapy for the CHD community. Being born with CHD herself, she brings experiential knowledge, along with her training, and research when working with clients, families, and medical professionals impacted by CHD. Her research interest is social work services, and therapy for individuals who are born with congenital heart disease. Her experience is counseling individuals who are permanently impacted by automobile accidents, afflicted with chronic disease, and experiencing grief, depression, anxiety, and end of life. She enjoys helping students succeed academically. Dr. Smorra earned her Bachelor’s in Business Administration from Western Michigan University, Master’s in Social Work from Western New Mexico University, and Doctorate in Social Wo

Send us a textWhy devote a magazine to the congenital heart defect community?Who are the editors of the "CHD Magazine" and how do they choose their articles?What have been some of the featured articles and what is yet to come?This program features former Guests and authors Jenny Muscatell and Amy M. Le. We discuss how the "CHD Magazine" came to be, who helps in various ways, and how members of the CHD community can find the magazine and even become a part of it.Helpful links:Jenny’s previous appearance: Jenny Muscatell: Heart Mom and Author https://www.buzzsprout.com/62761/8195423Amy’s previous appearances:A Surprise for Heart Warrior Amy M. Le! https://www.buzzsprout.com/62761/8667060Vietnamese Refugee, Author & Heart Warrior https://www.buzzsprout.com/62761/8324425Tasty Thursday: Lemon Cheesecakehttps://www.buzzsprout.com/62761/10127357Tasty Thursday: Boeuf Bourgignonhttps://www.buzzsprout.com/62761/10080444Tasty Thursday: Yellow Curry Chickenhttps://www.buzzsprout.com/62761/10049265

Send us a textHow can a 30-year-old Heart Warrior single ventricle survivor live without the Fontan? What special considerations need to be made when moving from Egypt to Canada? What are the biggest concerns when you fall out of cardiac care?Ellen Banoub was born in Egypt 30 years ago. She is a Heart Warrior, diagnosed with a hypoplastic left ventricle, transposition of the great arteries (TGA), pulmonary atresia, and dextrocardia. Ellen has had two surgeries, a shunt operation at one year of age, and a half-Fontan when she was 11 years old. She moved to Canada in 2013. She is studying social services and academic English and hopes to study social work to help others with social and medical problems. She has three heart-healthy siblings. Her older sister is a doctor who takes care of Ellen's health. Ellen recently became an aunt to Molly, who was born in early 2022. Aside from studying and spending time with family, Ellen enjoys acting, watching movies, listening to music, and reading.Ellen talks with A

Send us a textWhat is tricuspid atresia? What kind of complications did Amanda Braun face over the last three decades? What surgical interventions have helped Amanda overcome her cardiac challenges?Born in 1988, Amanda Braun was diagnosed with Tricuspid Atresia, VSD, and HRHS. She had her first of 6 surgeries at 3 months old, which was a pulmonary artery banding. At 4 she developed endocarditis and had to have the PA banding redone. Amanda required no other surgeries until age 14 when she had the Glenn and Fontan done. Apart from a sternal wire removal at age 22, Amanda was well until 32 years of age, when she began to develop a range of symptoms as her heart struggled. She had a dual-lead pacemaker implanted, which was complicated and required two procedures due to her Fontan anatomy. Amanda lives in Indiana and works as a Cardiac Monitor Technician. She also runs “Amanda’s Blankets” where she makes customized blankets for adults, children, babies, and pets.The program starts with us learning a bit about Ama

Send us a textWhy would an Australian support group start a podcast? Why is it valuable to have ‘HeartKids’ doing interviews? What topics interest Aussies who listen to this podcast?Sam Stolberg and Rachael Knowles are the hosts of 'From the Heart,' a podcast by HeartKids - the only national charity solely focused on supporting people impacted by childhood heart disease based in Australia. Childhood heart disease (CHD) includes both congenital conditions, and heart conditions acquired during childhood. HeartKids seeks to give everyone with CHD  a fighting chance to live a long, healthy, and fulfilling life. ‘From the Heart’ explores stories of people impacted by CHD. Sam's CHD didn't affect him much growing up, as he played high-level rugby league throughout high school. Then all of a sudden he needed open-heart surgery at the age of 26. Rachael grew up in a small town and vowed never to let her heart condition (tricuspid atresia) get in the way. However, she found herself pushing through

Send us a textHvordan kan en 35 år gammel HVHS hjertekriger overleve når han ble født i Norge? Hvilke spesielle hensyn måtte gjøres når han mottok helsehjelp i USA? Var denne hjertekrigeren bekymret for at barna hans også hadde en hjertefeil?Lasse Fagereng er født i Norge med HVHS. Foreldrene hans tok ham med til barnesykehuset i Philadelphia, hvor han fikk sin første operasjon bare to dager gammel av Dr. Norwood. I dag er Lasse en frisk 35-åring som eier og driver et treningssenter, og han elsker å trene. Han er gift, og har to hjertefriske sønner på 2 og 5 år. Takket være den hjelpen har fikk i Philadelphia, har Lasse en egen kjærlighet til USA, han har sitt andre hjem der som han elsker å besøke sammen med familien sin.I dag er Heidi Ingvaldsen vår gjestevert, og dette er vår første episode på norsk. Hun vil snakke med Lasse om opplevelsen med å bli født med et veldig spesielt hjerte i Norge, hvordan han etter hvert møtte kona, og bekymringene han og kona hadde angående fødselen av hans egne sønner. Til sl

Send us a textHow can a 35-year-old HLHS Heart Warrior survive when he was born in Norway? What special considerations needed to be made when receiving care in the USA? Did this Heart Warrior have concerns about his children having a heart defect, too?Lasse Fagereng was born in Norway with HLHS. His parents took him to Children's Hospital of Philadelphia, where he had his first surgery at two days of age by Dr. Norwood. Today, Lasse is a healthy 35-year-old who owns and runs a fitness center and loves to work out. He is married with two heart-healthy sons aged 2 and 5 years. Thanks to his great experience with care, Lasse has a love for the USA, owns a second home there and loves to visit with his family.We'll talk with Lasse about his experience being born with a very special heart in Norway, how he met his wife, and the concerns he and his wife had regarding the birth of his own sons. Lastly, he'll share with us how he feels about the United States, why he continues to travel to the US, and h

Send us a textWhat exactly is “Failure to Thrive”? How has one mother battled that diagnosis? What resources are available to help other families dealing with Failure to Thrive?Debi Lewis is the mom of two daughters – Ronni and Sammi. In 2005, Debi’s second daughter’s birth began what would be a nearly decade-long journey through the confusion and inefficiencies of modern pediatric specialty medicine. Initially trusting and slowly growing more frustrated, Debi learned quickly that even within the same hospital, silos had developed that kept her child from an accurate diagnosis and treatment plan. Through research and introspection, Debi began piecing together the mistakes and wrong turns that took her family from constant medical mystery into the final surgery that would change her daughter’s life — and her own — for good.She is the author of Kitchen Medicine: How I Fed My Daughter out of Failure to Thrive and has written for outlets including The New York Times, Bon Appetit, Huffington Post, Romper, Wired, a

Send us a textWhy might a father get a tattoo to resemble his daughter's open-heart surgery chest scar? How could getting a tattoo like that change his life? What does being an advocate for the CHD community mean to Matt Backe?Matt Backe is married to his wife Laura and together they have a 10-year-old son Jack and a 4-year-old daughter named Everly, who was born with a critical heart defect. Matt went viral on the internet after having a scar tattoo on his chest to match Everly's so she wouldn't feel alone. His wife Lauren followed suit the same day, getting an EKG tattoo on her left arm. Their unique tattoos help them to raise awareness of CHD and remind other families that they are not alone. The Backes live in Crystal Lake, Illinois, where Matt is a commercial insurance salesperson and Lauren stays home to take care of the family's needs. Everly attends preschool and loves to dance. They recently celebrated her's half birthday with a trip to Disney on Ice.In this episode of "

Send us a textWhat happens when a Fontan patient’s ejection fraction dips too low? Can a person’s heart damage be reversed? Is there hope for a cure for congenital heart defects?Brenton Ball was born in 1990. He was diagnosed with hypoplastic left heart syndrome or HLHS and was airlifted to Mercy Hospital in Des Moines, Iowa in his first week of life. He has had several heart surgeries including a pulmonary artery banding, hemi-Fontan, and completion Fontan. He's had many stents put in, a pacemaker, and two ICDs. Brenton has been married to his wife Kelsey for 5 years. They live in Iowa with their pet rabbit McBoon, a gift from Brenton’s sister last summer. They live close to their families and are a loving uncle and aunt to their four nephews and one niece. Brenton works part-time as a hotel desk clerk and enjoys reading and spending time with his family. In this episode of "Heart to Heart with Anna," Brenton shares with Anna what his medical journey entailed, how he came to take part in a rev

Send us a textThis episode deals with a very unusual congenital heart defect (CHD) -- a vascular ring defect. In this episode, we will be learning about what this heart defect is, how it affects the body, how the defect can be surgically managed, and how one mother took this experience and created a children's book to help other children with CHDs.Carli Valentine lives with her husband and their two sons, Finnegan and Lochlan, in Ogden, Utah. Finnegan was born with a heart defect which contributed to other medical challenges. Carli's experiences as a mother have informed her as an author. She has written several children's books that explore themes including congenital heart defects, ADHD, emotional regulation, executive dysfunction, and airway disorders. She hopes to share the magic of books with children to instill a passion for reading. When she's not writing, she enjoys spending time with her family and volunteering at her son's school or with CHD charities.  She is the author of

Send us a textWhat are Beads of Courage? Why would someone with a heart defect want to receive beads when experiencing difficulties in their medical journey? Who can benefit from the Beads of Courage program?Today’s show is Beads of Courage for CHD Warriors and our Guests are Beth Moneck and Brianna Hartmann. Beth has 6 years of experience working on a Cardiac Intensive Care Unit and Acute Care unit and Cardiac Intensive Care Unit and Cardiac Clinic as a Child Life Specialist at Children’s Hospital of Pittsburgh. For the past 7 ½ years, she has been working with the Beads of Courage program, a not for profit organization who partners with clinicians from hospitals in the US and worldwide to provide innovative arts in medicine programs to support the emotional well-being of young people coping with serious illnesses. Brianna Hartmann is a recipient of the Beads of Courage program. She has an ASD that was repaired at 6 month of age, and is currently experiencing problems with her aortic valve and blood pressure

Send us a textThis is a special episode of "Heart to Heart with Anna" featuring two heart friends who interacted with one another for seven years before meeting each other face-to-face in person. Anna Jaworski, our Host, was lucky to be invited to this special event. The following day, she went back to Katy, Texas to actually conduct a face-to-face interview with these long-time friends to share the excitement of the meeting and share some valuable stories sure to touch the hearts of those who listen.Do most Heart Warriors -- men and women born with congenital heart defects -- grow up knowing other Heart Warriors? Is that something that is more common today than decades ago? What kind of bond do Heart Warriors form when they come to know each other?Today’s show is 'Heart Friends Meet for the First Time!' and our Guests are Lauren England and Jeni Busta.Jeni Busta and Lauren England were both born with hypoplastic left heart syndrome (HLHS). In the first two years of life, they underwent mu

Send us a textWhat is NVLD? Why do some people want to change the name of NVLD to developmental visual-spatial disorder? What difficulties do people with NVLD have?Ever since Brandon Lane Phillips, M.D. had his first open-heart surgery when he was 2 years old, he wanted to be a pediatric cardiologist, just like the doctors who helped save him. Over the years, Brandon had multiple treatments and surgeries and thrived. At school, Brandon became an academically gifted student after repeating the first grade, but often felt that he struggled to keep up. He made it into medical school and in third year was referred for an educational assessment after scoring lower on a standardized exam than expected. Dr. Brandon Lane Phillips met Dr. Amy Margolis, an Associate Professor of Medical Psychology, at a Non Verbal Learning Disorder, or NVLD, conference. Dr. Margolis is the Principal Investigator of a project sponsored by the NVLD Project that examines the neural correlates of Non-Verbal Learning Disability.   Dr. Phill