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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.
Two adult women born with complex congenital heart defects share stories about what it was like to grow up and find love in an uncertain world. As a bonus, one of the husbands will be on the show, too! Many parents of children with congenital heart defects wonder if their children will survive infancy and can only hope and pray they will someday be adults. Parents sometimes worry about whether or not anyone will want to spend the rest of their lives with a person who is capable of love but has a funky heart. This show will address some of the fears and concerns adults with heart defects have, but above all, we'll talk about the joy of finding one's true love regardless of being born with a heart defect.
Version:1.0 StartHTML:0000000200 EndHTML:0000003747 StartFragment:0000002470 EndFragment:0000003711 SourceURL:file://localhost/Volumes/USB%20DISK/H2Hw-Anna%20Series%201%20Program%20Schedule.doc “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.
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.
Boys born with critical congenital heart defects are frequently not able to participate in sports like their heart-healthy peers. Because of the multiple surgeries needed, the frequent need for pacemakers or the concern about arrhythmias and the other complications that can accompany critical congenital heart defects, survivors of these defects frequently have to avoid contact sports or sports that are intensely aerobic in nature. How does this affect sons' relationships with their fathers? How can they still enjoy sports together despite medical restrictions? This show will feature the father of a young son as well as a father/son pair who have experience with topic.
Survivors of congenital heart defects, or CHDs, have frequently spent many days flat on their backs after having had open-heart surgery or other procedures. How does the abnormal positioning many CHD survivors experience possibly interfere with normal spine relationships with other bones in the body? What is the value of chiropractic care for CHD survivors? What myths surround the use of chiropractic care and what should parents of CHD survivors and survivors themselves know about chiropractic care? Who should receive chiropractic care? Are there certain groups of people who definitely should not receive chiropractic care?
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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.
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?
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.
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?
Anna Jaworski (Host) and Guests: Heart Mom Jennifer Reed, Dr. Angela Scheuerle (Tesserae Genetics), CHD Survivor Ben Weisbuch (Heart Hope Foundation), and Dr. Woody Benson (Children’s Hospital of Wisconsin) discuss what new genetic tests are available to assist with the diagnosis of CHDs and other problems, who should have genetic testing and how genetic testing can save lives.
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