From the moment parents find out that their child has a congenital heart defect, their world completely changes. Even before they are born, the happiness and joy of giving birth will be coupled with some complicated feelings like fear, sadness, confusion, and guilt. But, it is important to know that with the right medical care from the best doctors and the right home care, the child can have a normal life.
All parents face struggles while raising a child, but parents of children with congenital heart defects have to face extra challenges. Here is how you can provide optimum home care for your infant with congenital heart disease. You can even contact Rainbow Children’s Heart Institute to consult the best pediatric cardiologist in Hyderabad.
- Learning specialized parenting skills
Apart from the typical adjustments and stresses new parents face, parents who have a baby with a heart defect will be facing added challenges. First of all, they will have to struggle taking care of a baby admitted to a Neonatal Intensive Care Unit (NICU). Seeing their little baby with tubes attached to their body will be heartbreaking. Even after they are discharged and are back at home, they won’t be at their optimum health. Parents will have to follow special care instructions from the doctor to take care of their child.
Also, after their open-heart surgeries, their ability to eat will be compromised. Some babies are fed through a feeding tube. Apart from the feeding issues, some children have trouble gaining weight and have to go on special high-calorie diets.
- Becoming an expert
Knowledge is power. Parents with kids born with a CHD have to immerse themselves into learning and know everything about their child’s diagnosis, treatment plan, and medications. Also, it is important to stick to reputed websites and avoid internet overload.
- Making changes to protect their child
Children who are born with a CHD have a weaker immune system than other children. Their parents would have to be more cautious. Any illness that other children might recover easily from can get the children with CHD in the hospital. This means that the parent has to talk to the family members and friends about getting their flu shot. It is important that the child is kept as healthy as possible.
Once the child grows, parents have to maintain a balance between protecting their child and letting them live normally. Walking the line between over-protectiveness and healthy limits is a concern for many parents.
- Taking care of the finances
Surgical costs for treating a congenital heart defect is going to be astronomical, even with health insurance. The costs of doctor appointments and medicines will add up too. Children with CHDs take a multitude of medications, several times a day. A child who has undergone an open-heart surgery will have to take six or more medications every day.
- Educating the school
Sending a child with a congenital heart defect to a school can be challenging for the parents. Avoiding major illnesses is a primary concern. That is why it is crucial to educate the school staff about the child’s condition and limitations. Gather everyone who will be working with the child and help them understand the defect.
- Living with uncertainty
Even if the child doesn’t need any more treatments or procedures, regular doctor appointments will surely bring up the old memories. As the child grows, parents might feel fear about the risks of the defect and any unknown regarding the lifelong care of the child. The journey never ends and parents need support from others.
Parents of children with congenital heart defects need all kinds of support – informational, instrumental, and emotional. Only then will they be able to take care of their child. One way to do so is by connecting with other parents who have a child with the same heart defect. They can share a credible model of coping with exceptional life circumstances in a positive way. Also, parents can talk to a mental health professional to deal with stress, anxiety, and depression, as well as improve life satisfaction and sleep.