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Coping With The Diagnosis

Coping with your Child’s Diagnosis

(Source: Heart & Soul: Your Guide to Living with Congenital Heart Disease, Heart & Stroke Foundation)

At first, your shock and intense feelings may be very hard to handle, perhaps overwhelming at times. However, as you face your feelings and talk about them, you will begin to find ways of coping with this unexpected event. You will be amazed at your strength and the resources that are available to help you through this ‘brick wall’.

Accepting Your Feelings

The birth of a baby is usually a time of celebration, excitement, joy, uncertainty, and wonder. When you are told that there is a problem with your child’s heart, you may struggle to balance your feelings of celebration with your worry and disappointment.
All parents struggle because the baby they have dreamed about is different from the healthy baby they expected. You are not alone in what you are feeling. Many parents have shared their stories with us; some of their feelings are shared below.

  • Fear
  • Shock
  • Searching and Guilt
  • Anger
  • Confusion

Talking About Your Feelings

As you talk about your feelings, you will probably reach a better understanding of how you are behaving. Getting your feelings out in the open may reduce the tension and add to your sense of hope and anticipation.

Changing Your Expectations

Like most parents, you were probably hoping for a ‘perfect’ baby. Now that you know about your baby’s CHD, the way you think about your baby may change. Instead of planning the perfect future, you may spend a lot of time thinking about your child’s medical and care needs.

Telling Your Family and Friends

You may not want to share your feelings at first, but may also want the closeness that this sharing brings. Some people know just how to listen and comfort, but not all friends and family are supportive in times of need.

Building Your Support Team

Remember that you are not alone. Your friends, family, and work colleagues want to help. Some may not know how to help. Tell your support team exactly what is helpful and what is not.

Additional Resources available on request

  • Helping Siblings Cope Pamphlet
  • Before Delivery of Your Special Baby
  • Knowing but not Knowing
  • Why My Child? Everything you need to know about children with Heart Disease