Back in September of 2011 when I first found out that I was going to need a LVAD implanted to keep my heart going until a donor heart was found, my wife and I barely understood what exactly this device would entail, much less how we were going to explain it to our children (9-year-old daughter & 3-year-old Boy-Girl Twins). I could barely find info on the device for myself, and information on how to prepare younger children? There was nothing out there (believed me I searched and searched).
The 9-year-old “got it” much better than we thought she would (although she is brilliant, yes I am biased). She actually watched the informational DVD from Thoratec (the manufacturer) and looked through the training materials. She quickly decided she would have a new nickname for me – henceforth I would be known as BPD (Battery Powered Dad). During my stay in the hospital, she absorbed all she could like a sponge. She learned how to change batteries in case of low power or emergency and she learned how to and helps with dressing changes (yes she gloves up and masks up to ensure the sterile field). Personally I think we are blessed by this “smartie” and I told her she should consider Cardiology as her future as she could make a mint just from our family and extended family! ;)
The 3-year-olds understand to a degree that Daddy has “batteries” to wear each day and a “cord” at night. They equate my driveline site as being an “owie” as it is covered with a “bandaid” for the “owie.” They know that Daddy always carries his bag (the back-up bag with extra batteries and controller) at all times, and the 3-year-old daughter has thrown the strap over her shoulder to carry the bag and declared to her big sister; “I’m helping Daddy.” My little 3-year-old boy comes into our room in the morning and requests of me to “get on your batteries and come make waffles.”
They are learning to be careful around the cords, controllers, and driveline. Mostly they are just happy to have Daddy home, out of the hospital, and able to play with them again (I must say that it is a major source of happiness for me as well).
One useful tool while I was getting the LVAD happened in the form of a Teddy Bear. My wife took our children into a local Build-a-Bear Workshop (A company I used to work for, and opened their first store in MN) and they made a new bear for Daddy. His name is “Heartly.” He is a “Champ” Bear (one of the bear’s that is associated with causes that Build-a-Bear donates to) and he has a “stitched-on” heart on the front (to symbolize that Daddy will get a heart stitched in) where if you press it, you can listen to the heart beat. He is also a “Battery Powered” Bear as he has a fishing vest to wear which has 2 Double A batteries in each of the pockets (an addition the 9-year-old thought of) just like Daddy packs his batteries into pockets of clothes.
In the end, if you are open with your children, and explain to them on terms they understand, I believe you will have success in aiding them to understand this phase of life. Now we just need to get someone to work on the “Louie the LVAD” Cartoons!