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Losing a Child to a Congenital Heart Defect

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Losing a Child to a Congenital Heart Defect

“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.

Guest Bio Information:

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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.

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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.

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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.

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. Heart to Heart with Anna will be broadcast live every Tuesday at 12 Noon Pacific Time on the VoiceAmerica Health and Wellness Channel.

Snowflakes: How Each Heart Is Unique

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Snowflakes: How Each Heart Is Unique

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Tune in with Heart to Heart with Anna Jaworski December 24th for her new episode “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.

Guest Bio:

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.

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.

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.

Tune in December 24th for a New “Heart to Heart with Anna” Episode on the Voiceamerica Health and Wellness Channel for “Snowflakes: How Each Heart Is Unique”

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. Heart to Heart with Anna will be broadcast live every Tuesday at 12 Noon Pacific Time on the VoiceAmerica Health and Wellness Channel.

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