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Mended Little HeartGuide

Introduction Contents SECTION Fear Having a child with CHD means having fear — sometimes, a LOT of it. It’s all too easy to fill your head with frightening “what if …?” scenarios. Fear can rear its head in a variety of situations: Heading into heart surgery with a child is one of the most terrifying things you will ever do. Coming home from the hospital with your child after surgery is also incredibly scary, particularly if you have been in the hospital for a long period of time. Taking your son or daughter to the cardiologist or doctor can induce fear and worry because you don’t know what kind of news you’ll receive. One of the biggest fears of parents and caregivers of children with CHD is that their child will not survive. For many of our children, there are no clear solutions. Treatments that completely fix their hearts have not yet been developed. We don’t know what the future holds because many of the surgeries, procedures and devices used on CHD patients today have not been around long enough for us to understand their longterm effectiveness. The first successful heart surgeries were not done until the early 1900s, and the first one that used heart-lung bypass didn’t happen until the early 1950s. If you are in a CHD support group or network, you are likely to hear about children who did not do well. You’ll learn about some who lost their battle with CHD. Hearing these stories may increase your fear, but it may also encourage you to learn about the courageous families who endured the loss of a child and still found a way to help others and raise awareness. Parents and caregivers sometimes fear that their child will be exposed to germs and illnesses. Some even end up quitting their job and staying home because they are afraid to leave the house with their son or daughter. PLAY VIDEO Fear About My Child’s Heart Table of When cold and flu season comes around, these feelings can intensify. You have worked so hard to secure your child’s health that you don’t want to do anything that could jeopardize that, but unless a cardiologist has instructed you to limit contact, living in a bubble is not healthy for you or your family. There are many precautions you can take that still allow you to venture out with your child and have company in your home. The day-to-day care of children with special medical needs — especially kids who require medications and/ or the use of special equipment — can cause fear and stress. If you are a first-time parent, the normal concerns about learning to care for a new baby are compounded by the added responsibility of figuring out how to care for a newborn with medical issues. Some children with CHD will require a lot of specialized care, so parents may also worry about taking time off work and managing finances. Even if your child does well, you may worry about treating him or her like any other child, especially when it comes to exercise, sports and other physical activities. HELPFUL TIPS FOR MANAGING FEAR Again, it is completely normal to feel afraid. There are still more questions than answers about children living with CHD, and not all children with CHD do well. Go To 16


Mended Little HeartGuide
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