February 7th kicks off CHD Awareness Week, which takes place from February 7 - February 14. I can think of no better time then to share my friend Andrea Buginsky's book
"My Open Heart" with all of you. Below Andrea takes us through how her story began and the trials she went through as a child living with a Congenital Heart Defect.
To get the week started, I’d like to share the opening of my autobiography, MY OPEN HEART.
I was born on March 10, 1975. I guess I decided to let everyone know just how challenging I was going to be right from the start because I didn’t breathe on my own when I was born. I had to be resuscitated. But after that, I was good to go.
When I was three months old we lived in New Jersey, and my parents wanted to take me on my first trip to Florida to visit family. My mom brought me to my pediatrician for my regular checkup and mentioned the trip to him. He said it would be fine, but let her know that he had been hearing a heart murmur, or “a sound,” since my birth. Just in case I needed to see a doctor while I was in Florida, he wanted to make sure she already knew so she wouldn’t be upset when another doctor asked her if I was born with “the murmur.” He told her it was caused by a hole in the heart, common in a lot of babies, and not to worry because these holes usually closed by the first birthday.
So off to Florida we went! My first airplane ride…not that I remember it, but how many kids get to fly when they’re only three months old? Pretty cool!
Five months later, the pediatrician could still hear the murmur and told my parents it would be a good idea to take me to a pediatric cardiologist and get the murmur checked out – just to be sure it wasn’t something more serious.
So I met my first cardiologist, Dr. Griffiths, at eight months. She was the first of many wonderful doctors I have had throughout my life. After Dr. Griffiths completed a full examination, an EKG and chest x-rays, she gave my parents her initial diagnosis: Tetralogy of Fallot with transposition of the great vessel (aorta), which means that my aorta is on the wrong side of my heart. Tetralogy of Fallot is a combination of four heart defects that are present at birth, including right ventricular hypertrophy, or a narrowing of the pulmonary valve; a ventricular septal defect, or a hole in the heart wall separating the two ventricles; an abnormal placement of the aorta; and pulmonary valve stenosis, or a deformed pulmonary valve causing the flow of blood from the heart to the lungs to be slowed.
Dr. Griffiths also told my parents that I had an amazing pediatrician because very few would have been able to hear my murmur from birth. She recommended that I have a heart catheterization (cath), which confirmed her diagnosis; she was dead on with her initial evaluation.
And so, my adventure began. Dr. Griffiths was the first of many cardiologists to take wonderful care of me over the years. I would like to thank all of my doctors, nurses, and paramedics who took such tender care with me over the last 35 years. Because of you, I'm here to tell my story.
Growing up with heart disease can be difficult, but it does not always have to alter your life course. MY OPEN HEART is written for young adults growing up with heart disease. It's meant to inspire them to chase their dreams, to show that they are not alone, and, perhaps, to help guide them through the maze of life with heart disease. Parents of children with heart disease and other chronic illnesses will find support and inspiration within this true story. We are not alone.
MY OPEN HEART, as well as my other books, is available in multiple formats on my website.
"CHD Awareness Week is an annual awareness effort to help educate the public about Congenital Heart Defects. Participants include individuals, local support groups, national and local organizations and congenital cardiology centers throughout the world!"
Thank you so much for hosting me during this special week, Krystin :)
ReplyDeleteThat is so cool that you are helping out teens with Open Heart! Andrea, you are so inspiring!
ReplyDeleteThank you, Tonya!
DeleteI'm happy to do it...
ReplyDeleteI hope that the cause (CHD) is getting the attention that it deserves and that persons facing this traumatic issue find comfort in your words.