I am a parent or caregiver of a child with congenital heart disease.. experiencing different emotional states that are reflected during the care and processes that are being done to the child

parent or caregiver of a child with congenital heart disease

This means experiencing different emotional states that are reflected during the care and processes that are being done to the child.

Many parents feel emotionally alone during the interstage period because contact with other people is limited due to hospitalization and fear of various situations such as the risk of possible infections.

experiencing typical parenting moments:

Feeling sad about not experiencing typical parenting moments such as breastfeeding is also common.

These feelings are normal and can be mitigated, for example, by contacting other parents in similar conditions.

Also identifying a trusted caregiver to take care of your child for a few hours, so that you can meet some friends or share time with your partner, rest and recharge your batteries! In addition, caring for a baby in the interstage stage involves many additional tasks to normal child rearing, such as recording the child's weight, taking oxygen saturation, attending medical appointments, etc.

These tasks are not expected activities after giving birth to a child, so wanting to be a good parent while also being a good caregiver can be overwhelming.

Don't let stress take away pleasant moments of the day with your baby, such as:
  • Bathe and dress your baby.
  • Read and sing songs.
  • enjoy your baby.

provide the best care for baby:

Also take the time to take care of yourself. It is important to stay healthy to provide the best care for your baby; share responsibilities with other family members when possible.

Parents sometimes feel more like part of their babies' medical team than their own parents. Don't forget to bond with your baby, it can be difficult during the interstage stage.

The fear of losing the child can also be a limitation in establishing an adequate bond. Find someone with whom you can talk about your feelings, hopes, and fears; This could be a friend, a social worker, a psychologist, another caregiver, or your baby's pediatric cardiologist.

This person can help you feel more secure and supported. It's normal to have difficulty bonding, so don't judge yourself or your relationship with your baby.

Many parents who have experienced similar feelings manage to establish a strong bond with their own children.

Do you doubt yourself?

Self-doubt is common during the interstate stage. Even after training in the hospital, caring for children at home without the safety of monitoring by nurses is challenging.
The stakes are high, and parents are often afraid of making a mistake.
  • Please understand that you are enough and you can do it. Of all the people involved in your baby's care, you have the most special job: being a dad! You are the expert!
  • Trust your instincts and be a strong advocate for your baby. Don't hesitate to talk or ask questions.
  • Be confident in your abilities and if you have any questions don't hesitate to call your medical team for help.
  • Trust what you have learned and have confidence, this knowledge will increase.


Remember that you are the best caregiver for your baby, trust your own abilities and everything you have learned, do not judge yourself if you feel strange and sometimes do not understand how you feel.

It's normal to experience different emotions when you're a parent or caregiver of a child with congenital heart disease, but enjoy the experience of being a parent and being the expert in caring for your baby.