Losing a Child to a Congenital Heart Defect
âLosing a Child to a Congenital Heart Defect.â is an extremely emotional show, and it doesnât have the happy outcome weâd love for all of our shows to have, but I believe itâs 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. Weâll hear about mothersâ 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:
Angela Roberts:Â 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 couldnât cope and she blamed herself for Natashaâs 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 Angelaâs permission. She discovered other babies had also been kept without the parentsâ knowledge. This resulted in her starting an organization called âI Have Rights, Tooâ which is a support group for parents who had a stillbirth or loss of a baby.
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.
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. Daraâs 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.