Growing Up to be Independent with CHD

Parents do all they can to take care of their children, especially when they’re sick. But patient’s with CHD also need to learn independence, to be able to one day take over and manage their care and futures! This week, Kim shares her story and how her family encouraged her to lead her life on her terms.

Do you remember as a child thinking “when I grow up, I want to be…,” imagining your wedding day, or planning your career? We all dream of what great things lie ahead in our adult life. People born with CHD have the same dreams, but accomplishing that takes a little extra preparation. 

Little did I know what a favor my first cardiologist was doing in training my parents and myself for the independent life I have enjoyed. At appointments he would talk directly to me (even at age 5) to help me learn the terms, about being a “Pioneer”, not giving birth, and adoption. He also warned my parents, “She has a heart condition. You do not need to limit her. Her body will limit her.” He went on to explain the very basics of becoming independent. “She has a heart condition, do not make her an invalid. Treat her the same way you do your other children. If she needs a spanking, spank her. Then set her on the couch until she turns pink.” (Okay, I wasn’t so fond of that part.)

All of those words took root in my parents’ hearts and led them to raise me to become independent. The first real sign of independence was at age four. After my heart surgery, my mother let me do things that a two or three year old would normally do, but didn’t have the energy to accomplish; taking pots and pans out of the cupboard, pulling everything out of my toy box (which, when done, I pretended I was too tired to put them back), etc. Everything changed the day she heard a strange noise. Upon investigation she found me swinging on my brother’s curtains. This was the real beginning of true independence. 

Later, I graduated from high school and went on to college, where I met a man, worked in different fields from scooping ice cream to a division manager of TCBY, got married, adopted a daughter (see YouTube for our conversation about adoption under Kim Russell and Stephanie Gregory), and eventually wrote a book about growing up with a CHD.

Now, there is a more official guideline to independence for CHDers. It is suggested that by the age of 12, children should learn the medical term for their diagnosis and surgeries they have had. Building on that they should learn the names of their medications and what they each do.

If it hasn’t already been happening, age 16 is a great time to learn to order their own medication and begin talking directly to the cardiologist. This ensures a good rapport with the cardiologist to bring solid communication when the day comes for total independence. Patients and parents want to be comfortable with the level of independence needed for going off to college or moving out and handling their own healthcare.

Independence is a true dream that can be realized. Making a plan to become independent is helpful for both patients and parents, and working together toward this goal can be a true blessing. Parents can watch as their child becomes more and more independent, so they can fulfill their own life’s dreams. What a true gift to all.

Kim Russell was born in 1960 with a Double-inlet, Left Ventricle, Pulmonary Atresia, and chronic Cyanosis, meaning she turned blue with exertion. Her surgeries were at three-months old (Blalock Shunt), four-years old (Blalock Shunt), and thirty-two-years old (Central Shunt with a Bidirectional Glenn). She finished high school and went to college, where she met her husband. Being employed since the age of sixteen, Kim has scooped ice cream, done secretarial work, and eventually became a division manager for TCBY until her third heart surgery. Her friends once called her a professional volunteer, as she became involved with the CHD world. She is a former Board Member for the Adult Congenital Heart Association, volunteers at Camp Braveheart, and started an adult group in Atlanta for support and social events. When she was asked to speak at Kids at Heart for Children’s Healthcare of Atlanta, the parents stood in line to thank her for giving them hope. Kim authored her book, In a Heartbeat: A Baby’s Heart, A Surgeon’s Hands, A Life of Miracles about growing up with a Congenital Heart Defect.  Transition and Parenting Your Heart Child are her two favorite topics.

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