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Having a Child with a Congenital Heart Defect

Having a Child with a Congenital Heart Defect

Congenital heart diseases are present right from birth, and some may not manifest symptoms. You can read more about the different types of hereditary heart diseases, adult congenital heart diseases, their causes and symptoms, and treatment in our article here.

 

Congenital heart disease is usually diagnosed before or immediately after birth, and this could be an emotional moment for the parents. This is a time that brings a mix of emotions and confusion caused by social pressures. However, you must remember that these feelings are normal, and you should remain focused on what you can do to make the life of your child better in the long term.

 

90% of individuals treated for congenital heart diseases as children survive into adulthood. However, some defects must be repaired early in life to be effective. About eight out of a thousand children who are born have congenital heart disease. Nearly a quarter of these are critical congenital heart defects requiring surgery or treatment within the first year of life to ensure survival.

 

Here are the things you should know if you are the parent of a child with congenital heart disease:

 

  • You need to understand that your baby's routine may be different from that of others, and you should focus specifically on your child's development. For example, they may need additional support to start feeding if they've undergone serious procedures, including using a feeding tube.

 

  • It is essential to be informed and make decisions based on relevant scientific knowledge from suitable sources. However, it is also important to avoid sources of potentially false information that could lead you to take decisions that can harm your child in the long run.

 

  • Your child may have a weaker immune system, and it is good to take extra precautions to ensure that your child stays healthy and away from infection.

 

  • You should also consider the financial costs that continuous treatment for your child may require. However, several options are available, and it's important not to give up hope and seek out facilities where treatment might be available.

 

  • If your child is going to school or interacting with other children, you should advise both your children and their caretakers about the extra precautions your child might need.

 

  • You will need to continuously visit the doctors and do regular checkups as the child grows up, and it is essential not to skip out on these steps.

 

  • Sometimes the stress of managing your child's condition affects your own mental health. In that case, it is essential to seek psychological support or mental health care for yourself and understand that additional stress and feeling overwhelmed are ordinary and beyond most people's capacity. 

 

  • Depending on the condition, your child may also look much younger, thinner, and frailer than other children of the same age. They may also be slower to reach developmental milestones. It is essential not to be anxious about the pace and be as supportive as possible for your child's best possible course of development.

 

  • Your child's heart might need to work more, and your child's metabolism might be different and faster, so the child's nutritional requirement may be more. You may also notice that your child will tire quickly and have trouble absorbing nutrients from their food. 

 

  • Even when heart defects are repaired, conditions may require sustained treatment across their lifetime, which may include additional medicines, surgeries, or other procedures.
Dr. Praveen Khilnani
Paediatric Care
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