If you think you might benefit by being matched with a Peer Mentor, please click here for a support request application.
My name is Christa G., and I was born in 1973. I live in North Carolina, where I have been a dedicated mother and advocate for individuals with congenital heart defects. As the parent of an adult son living with a congenital heart condition, I have navigated the complexities of medical care, emotional resilience, and long-term health management. I have been a steadfast source of support throughout my son's journey, learning firsthand the importance of compassion, advocacy, and community. My personal experience fuels my passion to assist others facing similar challenges. Through the Adult Congenital Heart Association's Peer Mentor program, I aim to provide guidance, share insights, and offer a compassionate ear to those in need. I am committed to empowering individuals and families, helping them feel informed, supported, and less alone on their path.
I was born in 1972 with HLHS, a very complex CHD. I was a “blue baby” and the doctors knew right away something was wrong. After weeks in the hospital, I went home and then underwent my first open heart surgery at about 10 months of age, and a second shortly after. I had close follow-up and later annual follow-ups until age 19 when I was told I’d need another surgery; fortunately, I recovered well after placement of a central shunt. Since then, I have been evaluated for a heart and lung transplant twice, diagnosed with kidney cancer, had a kidney removed and thankfully, returned to my normal level of functioning. Until age 45, I’d never known anyone like me, leaving me feeling alone and afraid. I have always, however, tried to live my life to the fullest and not let CHD define me! I went to the 2017 ACHA National Conference in Orlando and I met so many strong, inspiring and awesome people! It was then that I knew I had to be a part of this wonderful organization. To empower, inspire and support those going through life with CHD. No one should have to face CHD alone! That is the reason I am an ACHA Peer Mentor.
I had congestive heart failure in 2011. After a month in the PICU, I had my first open heart surgery to repair my failing mitral valve, where my surgeon noticed my congenital mitral valve dysplasia and a quadricuspid aortic valve. In the next five years, I accumulated an open heart valve replacement and an emergency transcatheter valve-in-valve procedure. Needing surgery again in July 2021, I had the most transformative summer as I had to decide between a tissue or a mechanical valve. I chose the latter. Adjusting to Coumadin and the responsibilities of adulthood, I deeply craved a space to connect with other heart patients. My "heart journey" is a lifelong embarkment, and I am so grateful to have ACHA to accompany me. Through my experiences, I seek to uplift and support others on their journeys. I enjoy attending music shows and writing poetry. I am finishing my undergraduate degree with aspirations in graduate school and medical school.
When I was born, the doctors noticed a murmur in my heartbeat. They diagnosed me with ventricular septal defect (VSD) and tricuspid valve regurgitation. I had my first open heart surgery at the age of one to repair my VSD. When I was six, I had my tricuspid valve repaired. Growing up, I did not know anyone else who missed weeks of school for hospital stays, wore Holter monitors, or had a zipper scar. I felt confused when I received comments that I was too young to have a pacemaker and atrial fibrillation. This all changed in 2022. I joined the PACE community of Camp del Corazon, where young adults ages 18 to 25 with CHD meet for a weekend camp retreat in Southern California. I became a peer mentor because I want to bring the feeling of finding connection to those who thought they were alone. Our heart defects are diverse, but our fears and hopes are similar.
“You should not have stayed away so long! You need surgery, and I don’t want you to wait.” These were shocking words from my ACHD cardiologist. Like most adults, I had been living life without properly caring for my congenital heart defect, tetrology of Fallot. I was the lucky one who was the first TOF repair at Emory in Atlanta in 1972 at the age of four. With only a few interventions between four and 40, I figured I was set for life. When my cardiologist told me I needed another surgery, I was stunned. Once again, I was lucky. I was referred to a wonderful surgeon who was able to save my pulmonary valve and repair my right ventricular outflow tract. As I recovered and realized how truly fortunate I am, I decided I needed to help educate everyone about the importance of lifelong care with an adult congenital specialist.
Although I have a severe congenital heart defect, I try not to let it stop me from living a full life. I was born with transposition of the great arteries. I underwent three open heart surgeries early on in life. At the time of my last surgery when I was 4 years old, I was diagnosed with Eisenmenger syndrome, which means that I have severe pulmonary hypertension. This limits my physical ability significantly but despite this, I am as active as possible with raising two children, practicing Tai Chi and until recently, working full time in medicine. Unfortunately, due to the progression of my pulmonary hypertension I have had to cut back on work. I still want to help people and give back and am excited to do this through being a peer mentor.
As a parent of an adult son with the CHD, transposition of the great arteries, I became a Heart to Heart Peer Mentor to be a support to other family members on this journey. A Rashkind balloon procedure on the first day of his life and Mustard repair surgery at four months of age created a big learning curve for us, but within our family, this was the second child born with a CHD and they were a great support. I learned early every CHD journey is unique. So many surgical interventions and healthcare emergencies arose throughout his childhood and young adulthood, it is easy to lose count. During these periods, I often felt lost and knew I needed to develop healthy coping skills for myself and be there for my son in a better way as he transitioned into adulthood and made important decisions about his life and advocating for himself. We were fortunate to discover ACHA in 2008 and now take advantage of the numerous resources ACHA offers and so do my son and his wife.
A “patient pioneer” for correction of Tetralogy of Fallot, I was considered to be one of the first “successful” open heart surgeries in 1965 at the University of Pittsburgh’s Children’s Hospital. Prior to that, I had a Blalock (BT) shunt performed so that my cardiac condition could be managed until the later surgical procedure would have more optimal results. I was told that I was “cured” after surgery, and was not being monitored for quite a few years until one day, I had a happenstance conversation with a pediatric cardiologist who asked who was doing my follow-up. It was then that I learned that ACHD patients must have lifelong care. I feel very fortunate that up until now, post-surgery intervention has been primarily accomplished through annual cardiology visits combined with primary care. It’s been good to have a life. I pursued a relationship with ACHA so that I could offer some support and hope to families and patients who have experienced similar health issues.
I became a Peer Mentor in 2010 in support of my husband, Dave, who was born with tricuspid atresia. Dave had multiple surgeries and always had questions! We were referred to ACHA by our doctors in Boston. I left my banking job and became a cardiovascular technician so that I could understand what the doctors were telling me in order to help care for my husband. We moved to Phoenix, where I worked in Cardiac Care and Intensive Care Units, caring for other congenital heart patients. Dave passed away on his 52nd birthday in 2011, but I continue to work in the cardiac surgery division at a university medical center in Tucson, AZ.
I was born with subaortic stenosis. In 1985, I had my first open heart surgery at Riley Hospital. In 1995, I was one of the first patients in Indiana to have the Ross-Konno procedure. The surgery was such a success that it allowed me to become a successful collegiate swimmer, specializing in the breaststroke. In 2008, my pulmonic valve had become stenotic and resulted in an aneurysm in my aortic arch. After that procedure, I thought that I was finished with the procedures. Unfortunately, when you are born with CHD, sometimes, things don’t always go as intended. Since 2008, I have had seven ablations, three additional open heart surgeries, a thoracotomy, and in October 2023, had a Boston Scientific dual-chamber ICD implanted. Although the path hasn’t always been easy, I feel blessed to have a great support community within the ACHA, along with wonderful friends and family.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.