Stacey Richardson – Raised to be a fighter
Stacey was born with a congenital heart defect in the late 1960s, at a time when many babies born with CHDs did not survive long. Today, she is living well, with the help of an implanted defibrillator she has a love/hate relationship with. She lives in Maryland and has one adult son.
I’ve lived with a congenital heart defect my whole life. When I was born, my parents weren’t told how bad it was because the doctors didn’t expect me to live long. I went into heart failure as a toddler and have endured surgeries, countless doctor’s visits and more than my fair share of health scares. And yet, the thing that stuck with me most from my childhood is that with my family’s support, I can do anything.
Growing up, my parents supported me. They never told me I couldn’t roller skate or ride a bike or ski or travel. Because they believed in me and listened to me, I never felt fragile as a kid. I never felt like a fragile little doll because of my CHD. My parents and siblings helped me understand my limitations, but they made sure to raise me to be determined and confident.
I didn’t realize how important that was as a kid, but now, as an adult, I see what an invaluable impact that has had on my life. In 2002, I had a defibrillator implanted in my chest to keep my heart working properly. I was 34 and had a 9-year-old son and was told that when the defibrillator went off, it would feel like being kicked in the chest by a horse. I felt scared and alone because I didn’t know anyone who had a defibrillator. I didn’t know when it would go off or what it would feel like or what those around me when it went off would feel. It was hard to put those anxieties into words. My sister, my friends – they wanted to understand but if you don’t have that, if you haven’t been through it – you just can’t understand.
At the Red Dress Collection fashion show in New York City, I met another woman with a defibrillator and it was instantly like we understood each other. Having that support, knowing someone really gets it, is so important. I have good days and bad days but had never felt anxiety and depression-like I felt after the defibrillator was placed. Like my cardiologist once told me, this thing is like my guardian angel. I get that and at the same time, this thing that is helping me has sent me into panic attacks. For a while, having those two viewpoints made me think I was crazy. Like, who would hate something that is keeping them alive? I didn’t know it at the time because I didn’t have a survivors’ support group, but those feelings are normal.
Having the defibrillator also meant I had to quit a job I loved as an MRI tech. That was really hard. I thought, what in the world am I going to do? I had worked hard to have that job and it was just gone. However, from that, I was able to devote more time to my son. I was at every game, I was the Class Mom, a Band Mom – the whole nine yards. I have the best relationship with my son. He’s 28 now and calls to check on me every day. He’s a good kid and he looks out for me.
There was so much that was difficult when I got my defibrillator, but like I said – I was raised to be determined and confident. Not having anyone to talk to was so much in the beginning; I felt so alone and had nobody. How I didn’t break - I don’t know. I am a strong person and I got through it. I felt like I was going to explode and not having someone to talk to was very hard.
My mom passed away when I was 22 – 12 years before I got my defibrillator. She was always my safe place and so going through this without her was hard. I wondered what she might have done or how she would have handled it. Losing her from my support system just made it so hard.
My story is just my life and I hope that to somebody, it may be inspirational – “if she got through it, maybe I can, too.” I want kids who have CHDs to see adults who grew up like them and have gone through what they are going through. People need to see this hidden issue. CHDs affect the whole family, for their whole lives. It’s hard to understand unless you go through it.
