How to Take Care of Children with Congenital Heart Disease

How to Take Care of Children with Congenital Heart Disease
baby plays in doctor toy bear and stethoscope

A baby with a congenital heart defect can be a very stressful situation. This is especially hard for parents who often feel guilt, scared or sadness about their baby’s situation. However, feeling all of this is completely normal and while it may seem scary, asking the right questions for your baby’s health is your right.

According to one of the top heart specialists in Islamabad, a baby with congenital heart health should be treated, held, and taken care of the same way as a baby with normal heart health.  In many ways, you will take care of your baby in normal ways. A bay regardless of the situation needs your care and attention. While the baby will require one special attention towards its condition, considering the same amount of love, attention, and care is very important for both of you.

In case you are feeling confused by the situation, here are few things to pay attention to while taking care of your baby.

How you feed your baby

Feeding a baby with congenital heart disease can be a challenge at first. Especially if you are breastfeeding him/her. Due to the extra energy required for sucking, the child gets tired easily. However, breast milk is very important for a newborn baby as it helps in immunity development. Feeding your baby breast milk is highly beneficial, however, if your baby struggles with feeding regardless, consult with a pediatrician. You can try pumping the milk but that can be a hard drill for some new mothers.

Most doctors will even recommend a baby formula. Baby formulas help babies gain weight. Again, depending on your child’s condition it will be better to consult with a pediatric nutritionist.

Weak Immune System

Babies with congenital heart disease have weak immune systems. Fighting off infections can be hard for the baby which is why taking extra care of vaccines and flu shots are important. Extra precaution is required when your baby has a weak heart. For example, avoid taking your child to crowded areas where there are more chances of catching germs. Similarly, be extra careful when seasonal allergies are on the rise or there is a change of weather. Make sure to protect your child at all costs whenever there is a change in summer or winter. Also, make sure to wash your hands frequently and do not feel shame in asking other people to do the same once before holding your baby.

Closely observe your Baby

Is your baby breathless after a few steps? Is the baby pale? Does your baby feel tired or stays drowsy most of the time? A certain extent of all of this is important however, excess of it can be dangerous in the long run. For this purpose, you have to consult with a pediatric cardiologist right away. For example, once on my summer internship at IHS Islamabad, a child was diagnosed at age 6 with congenital heart disease. Sometimes when you see any of these symptoms in your child, instead of brushing it away, make sure to not delay your baby’s care and get in touch with any child doctor right away.

Keep extra Oxygen at Home

You have to be careful with this as oxygen catches fire right away.

Keeping an extra supply of oxygen can actually help a lot in emergency situations. It is given through a small tube and should be kept near your baby’s cot or bed. The amount of oxygen is regulated by a doctor but once you get a grasp of it you can keep one extra at your home. Please note that the amount of oxygen is NOT to be regulated by yourself at all. The amount of oxygen given should be the same as initially done by your doctor.

Family Counseling

Dealing with a long and God-forbid life-threatening situation can take a serious toll on your family. This is why it is important to take care of your own mental and emotional health as well. The best way to do so is to;

  • Stop blaming yourself sick of that anything in your power could have made the situation any better. No, it would not have been.
  • Learn everything about your child’s situation and how you can make it better.
  • Grieve if you have to but at the same time accept that this situation is there and requires your immediate attention.
  • Join a support group to not only learn more about your child but also to feel that you are not alone.
  • Try online therapy whenever you feel overwhelmed by your emotions.

The Takeaway

Situations involving the sickness of your child can be very hard and heart-crushing. However, seek it in a positive way. With a positive attitude, you will not only help your child but can also reach out to others in similar situations and can be a hope to them as well. All you have to do is be willing to see and accept your obstacle as your empowerment.