Heart to Heart with Anna: Recent Episodes
Anna Jaworski
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.
How do you feel when you are given the worst news of your life? What if that news is that your unborn child’s heart isn’t growing correctly and your child will probably need life-saving open-heart surgery in the first days or weeks of life? What if you are an adult who was born with a congenital heart defect and you’re always waiting for the other shoe to drop? What if you are the grandparents awaiting that phone call drawing you to the hospital to see your grandchild’s birth only to be replaced with a phone call full of tears because your grandchild’s heart isn’t perfect? At times like these a person feels completely alone in the world. Tune in to today’s show to listen to Nancy and J.D. share their experiences as grandparents while Callie Rickard tells us what it’s like for a mother to be told her son needed a transplant and Carl Wolford shares his experience as Denton Cooley’s second survivor of the total anomalous pulmonary venous return corrective surgery he pioneered.
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.
Congenital heart defects, the #1 birth defect, affect at least 1 in 100 babies born throughout the world yet when asked what causes heart defects, most doctors have had to admit they don’t really know. Many doctors tell parents that their children’s heart defects are “flukes of nature.” Occasionally heart defects are linked to particular diseases mothers were exposed to while pregnant, drugs they took or common to a family, but most of the time, doctors have had no clue what has caused complex congenital heart defects . . . until now. Finally, thanks to the advent of new tests and dissatisfied with vague terms like “flukes of nature” doctors are delving deeper into the actual causes of our world’s #1 birth defect – heart defects. Listen to Episode #5 of Heart to Heart with Anna to find out what kinds of genes can cause heart defects, who should seek genetic counseling and how genetic counseling can save a person’s life in this show: Genetics in the Congenital Heart Defect Community.
Babies who have had open-heart surgery, especially those with complex, congenital heart defects (CCHDs), are at much greater risk for brain injury or learning disabilities. Because of the heart defects themselves, and because of the complicated circulation involved with CCHDs, infants are more at risk for strokes. Infants who have had strokes often have brain injury due to stroke and those children with brain injuries caused in early childhood are more at risk for learning disabilities. While this sounds very frightening, it doesn’t have to mean that your child’s quality of life will be greatly inferior to a child without a heart defect. Today’s show features a heart mom whose child had an anoxic brain injury (which is fairly uncommon), a pediatric cardiologist and pediatric neurologist from Boston Children’s Hospital, and a special education advocate. These expert Guests share information to help others navigate raising a child with a brain injury and/or learning disability.
Congenital Heart Defect (or CHD) Awareness is an extremely important issue. Congenital heart defects (heart defects present at birth) are the #1 Birth Defect. While a commonly reported statistic is 1 in 100 babies are born with a heart defect, that statistic does NOT include the most common CHD – bicuspid aortic valve. In fact, that statistic does NOT include a number of CHDs. That means that more than 1 baby in 100 is born with a CHD. Congenital heart defects also kill more babies than any other birth defect. In the United States there are 40,000 babies born every year with a CHD. There will be one million babies born worldwide with a CHD and 100,000 of them will not live to see their 1st birthday. While these numbers are staggering, there are still many people who are unaware of the fact that babies can be born with CHDs. We must raise awareness to stress the importance of funding research to prevent future generations of children from dying and suffering from this birth defect
With more children with complex, congenital heart defects, or CHDs, living beyond their first of year of life than ever before, parents and the professionals working with those children need to know what normal development is for this group of survivors. What kind of behaviors are normal or common? Is it to be expected that the majority of these children will be labeled “Failure to Thrive”? Is it common for children with major heart defects to need feeding tubes? How does the use of feeding tubes affect speech and language development? What can parents and the professionals working with them do to help these smallest survivors have a good quality of life? Who should be part of children’s care team? When should parents seek outside help? These questions and more are answered in today’s episode: What is Normal Child Development for Children with Complex Congenital Heart Defects?
There are over one million adults alive with a congenital heart defect or CHD. Many surgeries performed on survivors are corrective but not curative. The non-cardiac health issues that seem to appear fairly regularly include, but are not limited to: problems with teeth, (i.e. an abscess, needing wisdom teeth removed or needing braces); scoliosis; problems with legs or feet requiring braces or surgery, pregnancy or female problems, male babies with undescended testicles or concern about circumcision, eye problems, protein-losing enteropathy, other intestinal problems, plastic bronchitis, asthma, strokes, seizures, migraines and allergies. These non-cardiac conditions are more worrisome for heart parents and CHD survivors since everything is more complicated when considering a body which has had open-heart surgery. Special considerations must be made for drugs taken and surgical complications endured. What kinds of non-cardiac health issues are common in the heart community and why?
According to the American Psychological Association “Marriage and divorce are both common experiences. In Western cultures, more than 90% of people marry by age 50. Healthy marriages are good for couples’ mental and physical health. They are also good for children; growing up in a happy home protects children from mental, physical, educational and social problems. However, about 40-50% of married couples in the United States divorce.” I scoured the Internet for statistics on families of children with congenital heart defects and was only able to find one small study. That study from 1979-1980 Pediatric Cardiology looked at 40 families of children with tetralogy of Fallot, and they concluded that, “stress due to reparable tetralogy of Fallot appears to be well tolerated in the family and is associated with no more family instability or marriage dissolution than a childhood appendectomy.” Each of our Guests today is the parent of a child with a CHD. Our Guests today are Brenda Vignaroli, Leah Anne Lowrey and Frank Jaworski. They will tell us about what kind of relationships they are in and how having a child with a congenital heart defect has affected those relationships..
What kind of quality of life can survivors of critical congenital heart defects or CCHDs have regarding sports and hobbies? About 25% of CHDs are considered CCHDs. Children with CCHDs need surgery or other procedures within the first year of life. They are at risk for death or disability if their heart defect is not detected soon after birth. Some people with treated CCHDs have few related health problems later in life. However, long-term effects of CCHDs can include delayed development and reduced stamina during exercise. Could it be that some CHD Survivors can beat the odds? Meet three adults with CCHDs who have thrived despite being born at a time in history when the surgeries needed to save their lives were considered experimental. They will tell us about what kind of sports and extra-curricular activities they have enjoyed growing up. If you’ve ever wondered if someone with a CCHD can master karate, play in a marching band or enjoy robotics then you should listen to this episode.
Thanks to advances in medical science, 90% of the babies born today with a congenital heart defect or CHD will live to adulthood. That means 90% of today’s babies will someday be teenagers. For the first time ever, there are more adults alive with congenital heart defects than babies. What does this mean for our aging CHD population? Each of our Guests today was born with a critical CHD (CCHD). About 25% of CHDs are considered CCHDs. Children with CCHDs need surgery or other procedures within the first year of life. They are at risk for death or disability if their heart defect is not detected soon after birth. Some people with treated CCHD have few related health problems later in life. However, long-term effects of CCHD can include delayed development and reduced stamina during exercise. Today we’ll meet three adults CCHDs survivors: Monica Mossey, Tara McFadden and Jeni Busta. These ladies will share with us what their triumphs and challenges have been during their teenage years.
“Losing a Child to a Congenital Heart Defect.” is an extremely emotional show, and it doesn’t have the happy outcome we’d love for all of our shows to have, but I believe it’s an extremely important topic and one that warrants our attention. To consciously decide not to talk about how many children we lose to CHDs would do a disservice to the thousands of innocent lives lost each year. During this show we honor not only the children we will talk about today with three loving mothers, but we also honor all children and adults who have died because of their congenital heart defects. While the United States death rate from congenital heart defects dropped 24% from 1999 to 2006 among children and adults, there are far too many people dying from congenital heart defects. Today we will talk with three mothers whose children died too soon. We’ll hear about mothers’ experiences with having a stillborn baby, a baby post-Norwood and an adult child who died long after it was thought she would.
Today’s episode is called “Snowflakes: How Each Heart is Unique.” The heart is an extremely complicated organ. The muscle on one side of the heart differs from the muscle on the other side of the heart. There are valves that open and close allowing blood to travel to different parts of the heart, to the body and/or to the lungs. The heart has its own unique electrical system. There are structures inside the heart separating different chambers from one another. In babies with congenital heart defects, something goes wrong and there are a lot of places where something can go wrong. We will discuss the noninvasive and invasive procedures doctors currently use to obtain a diagnosis for children with congenital heart defects. We’ll talk with the mother of a child with a very unique heart and how having that child has affected her. We’ll also meet a nurse who is working on developing a feeding protocol to help babies born with congenital heart defects survive when they are between surgeries.
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.
Congenital heart defects, the #1 birth defect, affect at least 1 in 100 babies born throughout the world yet when asked what causes heart defects, most doctors have had to admit they don’t really know. Many doctors tell parents that their children’s heart defects are “flukes of nature.” Occasionally heart defects are linked to particular diseases mothers were exposed to while pregnant, drugs they took or common to a family, but most of the time, doctors have had no clue what has caused complex congenital heart defects . . . until now. Finally, thanks to the advent of new tests and dissatisfied with vague terms like “flukes of nature” doctors are delving deeper into the actual causes of our world’s #1 birth defect – heart defects. Listen to Episode #5 of Heart to Heart with Anna to find out what kinds of genes can cause heart defects, who should seek genetic counseling and how genetic counseling can save a person’s life in this show: Genetics in the Congenital Heart Defect Community.
Having a chronically ill child in the family has an impact on the whole family, including healthy siblings. According to the World Facts and Statistics on Disabilities and Disability Issues, about 10% of the total world’s population, or roughly 650 million people, live with a disability. Since heart defects are the number one birth defect, millions of families are impacted by congenital heart defects. Families of chronically ill children frequently have healthy children who are often overlooked when the ill child is hospitalized. Children’s responses to having a chronically ill sibling vary depending on age, especially in relation to the age of chronically ill child. In some cases healthy children can develop anxiety, acting out behaviors and depression. In other cases, the healthy children seem to become more mature and compassionate than their peers without chronically ill siblings. This show will examine we can help healthy children cope when their sibling is hospitalized.
Every ten minutes another name is added to the national organ transplant waiting list. More than 120,000 men, women and children currently need lifesaving organ transplants. The United Network for Organ Sharing also reports that an average of 18 people die each day from a lack of available organs for transplant. Jessica Pearlman and Anthony Pugliese know what it’s like to be on that waiting list. They also know what it’s like to finally receive an organ that allows them to live another day. Emily Wiebke, Kathy Keller and Eileen Pearlman will share with us what it’s like to be the mother of a heart transplant recipient. With 90% of Americans saying they support donation but only 30% taking the essential steps to become a donor, this Episode focuses on answering questions about who needs organ donation, why it’s so important to donate organs and the difference organ donation can make in the lives of families.
It only seems natural that people who have survived extremely stressful situations should have some kind of backlash to endure. How do members of the congenital heart defect community deal with the stress involved with surgeries, waiting between surgeries, surviving while others around you don’t make it and, perhaps the most insidious of situations – how to survive seemingly “innocent” environments or questions from friends, loved ones or even strangers that all of a sudden pull you back to a dreaded time and place, perhaps best forgotten? Today’s Episode deals with these questions and more as two adult survivors of congenital heart defects, Lauren Bednarz and Yasmin Southwood, discuss dealing with Anxiety and Survivor’s Guilt. Brybe Bagwill, the father of a child with a serious congenital heart defect discusses how he discovered he had Post Traumatic Stress Disorder and how he’s coping with it.
How do you feel when you are given the worst news of your life? What if that news is that your unborn child’s heart isn’t growing correctly and your child will probably need life-saving open-heart surgery in the first days or weeks of life? What if you are an adult who was born with a congenital heart defect and you’re always waiting for the other shoe to drop? What if you are the grandparents awaiting that phone call drawing you to the hospital to see your grandchild’s birth only to be replaced with a phone call full of tears because your grandchild’s heart isn’t perfect? At times like these a person feels completely alone in the world. Tune in to today’s show to listen to Nancy and J.D. share their experiences as grandparents while Callie Rickard tells us what it’s like for a mother to be told her son needed a transplant and Carl Wolford shares his experience as Denton Cooley’s second survivor of the total anomalous pulmonary venous return corrective surgery he pioneered.