The Mental Health Battle of Families with Critically ill Children

Becoming a parent is a life altering experience. Holding your child in your arms and watching your little baby respond to your touch is a feeling that has no parallel. And from there onwards each stage of parenting brings with it joy and beautiful experiences.

For some parents however, this journey of parenting takes a different turn when the child is diagnosed with a critical medical condition. The diagnosis of a condition, be it heart disorders in children, cancer, juvenile diabetes, autism, epilepsy is something that no parent ever wants to hear. And yet when they do have to face the harsh truth, they are engulfed with waves of anger, guilt, fear, frustration, grief – an assortment of emotions just takes over them. Most parents after experiencing this initial tsunami of emotions throw themselves into a warrior mode- to do what it takes to make their child better and somewhere along the line this impacts their own mental health.

Parents of children with a critical Congenital Heart Defect (CHD) are at an elevated risk for mental health issues. Though the survival rate of heart disorders in children has improved considerably over the past decade, allowing them to survive complicated surgeries and go on to have near‐normal life expectancy, having a child with CHD can be very stressful for parents.

Researchers has shown that parents, and especially mothers dealing with heart disorders in children, experience depression, anxiety, and feelings of guilt, adjustment problems, and poor quality of life more often than parents of healthy children or children with other medical problems.

Caring for the complex needs of a child with critical CHD can place a significant burden on the family.  Coping with their children’s medical appointments and cardiac procedures, long and multiple hospitalizations and follow-up, digestive and feeding issues, and increased risk for major respiratory illnesses—is not easy by any measure.

There is bound to be a huge emotional strain to go through all these procedures with your little one. This gets augmented in many cases with the financial strain that the parents need to go through as well – the treatments are expensive and for many parents still grappling with understanding the condition of their child there is the added task of arranging the funds.

A pediatric intensive care unit section of the hospital may also impact the parent–infant attachment and parental adaptation. So, the staff of the pediatric intensive care unit section, therefore, can help the parents in dealing with their new traumatic situation which can be done by providing parents information and psychoeducation, involving them in taking care of their infant as much as possible and strengthening their role as parents, to enhance the bonding with their child.

Studies also point to the need for providing support both to children and adolescents with CHD and their parents, especially mothers. Hence, there is a need for early identification and screening of parents at risk of stress and mental health problems. The practitioners working with heart disorders in children, can play a critical role in managing and directing the parents to the right sources to help address their issues.

What is important is for parents to accept their own emotions as well and reach out to the right help to support them in this process. Connecting with support groups of parents can be a big source of information and strength. Connecting with parents on a similar journey can be an effective way of finding an outlet to what one is going through – as no one will understand this journey more than another parent in the same shoes. Reaching out to a professional for counselling and support is another way to cope. Mental health professionals are qualified to help one walk through the range of emotions we are experiencing and teach us ways to be able to deal with them in a better way.

Very often, having a child with a critical medical condition such as a heart disorder in children takes a toll on the relationship of the couple. The anger, grief, frustration, anxiety, financial strain along with finding little time for each other due to the medical conditions, very often leads to a strain on the couple. It is ok to acknowledge the same and reach out for help if needed. Finding time for each other despite all the challenges is critical and important for the parents. After all, the parents are the pillars of the child’s foundation.

It is well established that compromised parental mental health, if untreated, can adversely affect a parent’s ability to care for his or her child and can lead to long‐term cognitive, health‐related, and behavioral problems in children. The mental health of a parent can result in dysfunctional parent‐child interactions, which may subsequently influence parenting behavior and result in maladaptive child outcomes.

Most importantly, long term stress experienced by parents who have children with a critical medical condition impacts their own health. These parents are running a marathon and it is important for them to take breaks, connect with others running with them, breathe and ensure that they are ok to finish the marathon. Remember parents, the kids are OK if you are OK.

References:

1. Mental Health Among Parents of Children With Critical Congenital Heart Defects: A Systematic Review | Journal of the American Heart Association (ahajournals.org)
2. Pediatric intensive care unit – Wikipedia