Parenting Changes
Parenting Changes: When Your CHD Warrior Grows Up
Alysanne Crymes is mother to Brendan, 21 years old, born with complete congenital heart block. He has had a pacemaker since he was 6 months old and has required 4 pacemakers in the last 21 years. Brendan’s heart block was diagnosed before he was born. After birth, he was also found to have an atrial septal defect (or ASD) that was surgically closed. Other than his heart condition, Brendan has a genetic mutation that causes his body to produce tumors. The tumor secreted epinephrine, which led to a hemorrhagic stroke when he was 15 since they were unaware of the tumor at that time. This latest chapter in Brendan’s life began in 2013 when the tumor was found and removed. Since then he is being monitored for further tumor growth at the National Institutes of Health. At the present time, he has a very small metastasis on his hip bone. His current diagnosis is Pheoparaganglioa Syndrome and he is stable.
Frank Celeskey is a father to three wonderful children (2 sons and 1 daughter). His 27-year-old daughter, Lauren Bednarz, was born with tricuspid atresia and hypoplastic right ventricle – which basically means she was born with half a heart. Lauren had a Fontan Procedure almost 25 years ago. Frank has been a mortgage banker for over 30 years. He is an outgoing, funny guy who loves to socialize and enjoys sports. Frank lives in Michigan and Lauren lives in Texas with her husband. Despite distance they still have a close relationship. Frank has always tried to keep positive in raising his CHD daughter and is proud of how proactive and knowledgeable she is with her care.
Links Mentioned in the Show:
Adult Congenital Heart Association
University of Michigan Health Systems: Children with Chronic Conditions
Other Helpful Links:
The Future of Adult Congenital Heart Disease
NCBI: Paragangliomas and Paraganglioma Syndromes
The Voice of the Congenital Heart Defect Community 