Looking for Congenital Heart Disease Support

Looking for Congenital Heart Disease Support

Congenital Heart Disease (CHD) is a difficult disease that can affect patients throughout their lifetime. They are not the only ones, however, who are affected by the disease. As we have seen, the families of these patients often bear the burden of the disease as well, especially when the patient is a child. 

If you are a family member of a patient with CHD and need support there are several ways you can reach out for support. 

Ask your medical support team or the social worker supporting you. These resources will have the best information on where you can connect with fellow parents of patients locally. They may be able to connect you with a family who has been through a similar situation or points you to online resources where you can connect with parents and even former patients who will be willing to help you navigate what can be a very difficult disease. 

Connect with a grief counselor. When your child is diagnosed with CHD the emotions you feel can be similar to what you experience when you lose a loved one. A grief counselor can help you process those feelings of loss, sadness, and even guilt you may be struggling with. Dealing with these emotions will help you focus on your child’s needs and the needs of the rest of your family.

Find a support network. There are several support networks that parents and families of children with CHD can join. Conquering CHD offers a variety of CHD support groups and the U.S. Centers for Disease Control and Prevention lists several support groups and resources on their website where families can begin.  

Find support for siblings. Growing up as a sibling of a CHD patient can take a toll. Not only can these siblings feel the same guilt and sadness that parents often feel, but they can also often unintentionally be left isolated and those feelings can stick with them. By identifying a support group where these children can connect with other siblings of CHD patients can be an important outlet for them to talk through what they are feeling with some of the only people out there who can understand them. It may also be helpful for these siblings to speak with a counselor of their own. 

Reach out to your extended family. When you are the parent of a child that has been diagnosed with CHD, you are going to need the support of your parents, in-laws, and other family members. Don’t be afraid to ask for that help. These family members not only love you but also love your children as well. They can be there to help with daily tasks, to hold your hand when your child has to visit one of their medical providers and to support your other children when you are unable to be there in person. 

CHD is a difficult disease to manage. If you are the parent of a child with CHD don’t expect to go it alone. Reaching out for help will not only benefit you, but it will be key to the overall care of your child as well. 

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