If you are reading this book, you are probably the parent of a child with a congenital heart defect (CHD). Or, maybe you are a young person born with a CHD. I would like to tell you a little bit about myself. I was born in 1938 with the CHD called Tetralogy of Fallot (TOF). And as you can see by the date, I am sixty years old. Experience is my credential for writing this introduction.
I know the questions that are in the hearts and minds of parents, young women, and yes, young men, when a CHD is present in their lives. Parents ask themselves so many questions. How long will our baby live? What kind of quality of life will the baby have? Will she be able to have children? Will he be able to father a child? Should we trust our child’s life to the hands of a surgeon? What will happen to him/her if something happens to us? Mom will worry that she did something to cause the CHD or that it could have been avoided had they done things differently. Dad will worry that somehow he is responsible for his child’s CHD as well. There is guilt, frustration and yes, there is anger.
There are many questions in the mind of a young woman with a CHD. How could any man ever want me? And if there is such a man, how could I take care of a husband? Will I be able to be intimate with my husband? Will I be able to have a baby? Will I be able to experience the delight of holding my baby close in my arms and watch as a little smile curls upon his tiny lips? Will I be able to caress her soft hair? Will I be able to see my baby grow and mature? Will I be able to take care of my baby as she grows and matures? Will I be able to take care of my two-year-old toddler as he runs circles around me? And how can I keep up with him/her as the teen years approach? Will I be there for the teen years?
Even though the young man will not have to face the physical stress of childbirth, there are other stresses that are typical to men. Young men will have many questions, too. Will a young woman ever want me? Will I be able to be a lover to my wife? Will I be able to protect her? Will I be able to father a child? Will I be able to roughhouse and play football or baseball with my son? Will I be able to swing my little girl high into the air, see her hair sparkling in the sun and hear her laughter?
And of course there is the big question of all involved: Will the progeny of a person with a CHD inherit that CHD? And there are questions in the minds of those of us as we have matured, and yes, aged. How much longer do I have? Will I be a burden to my loved ones? Will I end up in a nursing home? Will I become a vegetable on a life-support system? The questions swirl around and around, sometimes becoming difficult to bear.
In the 1940s most children born with TOF died before or during their teens. It was also believed that children born with TOF were unable to learn. The school nurse told my mother that she might be able to teach me to cook and sew, but thankfully, my mother was not satisfied with that. She taught me how to read and write. When the school nurse found out that I was able to learn, she went to the school board, and they set up a tutor for me. After my first surgery in 1949 (a Pott’s shunt). I was able to go to public school for the first time. And because of my mother’s diligence, I was able to enter the fifth grade with my other children my age. I graduated from high school in 1957.
When I had my first surgery a great and wonderful change came into my life. I bounded around in a way I was never able to do in my life. I learned to swim, ride horseback, ski, and skate. I was just like any other normal teenager. But one of the first questions that I asked my doctor when I came to be old enough to be thinking about it was, “Will I be able to have a baby?” the answer was, “You can have six babies if you so wish.” Well, I did not want that many, but, oh how happy I was to hear that!
Yes, there was a man who loved me and wanted me. His name was Richard. January 2, 1959, I gave birth to our baby girl, Peggy. I had a very difficult time because the hours of labor and the delivery took their toll on me, but when I saw my beautiful baby girl for the first time, I was so happy! The pain of childbearing was forgotten. There she was, all red and wrinkly and screaming her head off. She had good lungs! “But, how is her heart?” I asked the doctor. Her heart was fine. She was perfectly healthy, all five pounds, twelve ounces of her.
The first surgery in 1949 gave me sixteen wonderfully healthy years, but I began having trouble in the early sixties. By that time, they were doing open-heart surgery. In 1965 I had my first open-heart surgery. this surgery gave me fifteen more wonderfully healthy years. In 1977 Peggy was married and ready to start a family of her own. One year later, I became a grandmother. Peggy had given birth to my granddaughter, Rebecca. How wonderful it was to hold my granddaughter in my arms. This person, who had very little hope of living to adulthood, was actually holding her first grandchild. What a wonderful feeling.
I found myself back in the hospital having my second open-heart surgery in 1980. At the same time, Peggy was pregnant with my oldest grandson, Isaac. It was a while before I first saw him, but I was there when he took his first steps. I was so proud of him. In 1984 my second grandson, Daniel, was born. Fortunately, I had gone to be with Peggy before Daniel was born and was there to see him when he came home from the hospital.
In 1988 I had my third open-heart surgery. At this time, Peggy was pregnant with my granddaughter, Elisabeth. She was born a few days after I was discharged from the hospital. They came to see me soon after I was home, and I found myself holding another beautiful little grandchild in my arms.
Now, thirty-nine years later, my daughter’s family has grown. Since Peggy remarried David, I became a step-grandmother to Connie. Now I have three granddaughters, two grandsons, and one great-granddaughter. Rebecca and her husband, Vic, are now the proud parents of Asia Renee. Yes, I have a great-granddaughter. What a blessing to sit there and hold this beautiful little girl in my arms. The first time I saw her, I could not hold back the tears. And Rebecca is pregnant again. an ultrasound tells us that there is a great-grandson coming in March of 1999. I am so proud of each one of them. All I can think is, look at what I would have missed if Mom and Dad had not trusted me to the hands of a surgeon.
I have seen cardiology grow to the high-tech, computerized, sophisticated profession we know today. Whereas in the 1940s, there was little hope for people like me; today there is much hope for a person born with a CHD to live a full and purposeful life.
Editor’s Note: Sadly, Judy Norwood passed away on December 23, 1998 after another open-heart surgery. She died due to a blood clot to her lungs while recuperating in a rehabiliatation center. She will be missed by her family and those of us in the CHD community who had the honor of getting to know her.
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