Taking care of a child with special health conditions is a difficult, traumatic process with many ups and downs. This article emerges as a tribute to the parents I observed while working as HOD Psychology with an NGO providing services to children who were differently-abled. A silent salute to the fortitude of these parents.
Many of us remember the 2008 Niketa and Harsh Mehta case. The Mumbai couple moved court to abort their 26-week-old fetus detected with a congenital heart disease. The Bombay high court turned down the application as the law disallows abortions after the foetus is 20 weeks old, and Niketa was 24 weeks pregnant when she approached the court. Nevertheless, the anguish and trauma of the Mehta couple was up for the world to see…. It was the agony of parents who had been given the news that their soon-to-born child could never lead a normal, healthy life.
All parents look forward to the birth of their child with much joy and anticipation. But the sad truth is that despite rapid advances in medical science, parents can still experience miscarriage, stillbirths, neonatal deaths, or have babies born with lifelong medical challenges. Helping parents adjust with a child with special health conditions is a difficult, traumatic process with many ups and downs.
The grief cycle
According to renowned psychologist Elizabeth Kubler-Ross, most people go through a typical “grief cycle” when faced with any life-changing news such as a terminal illness, infertility, death of a close one or a child with birth defects. This is how the cycle goes:
Denial: “This can’t be happening, not to my child”, “The doctors must have made some error.”
Anger: “Why me? It’s not fair! Why should our family have to go through this?”
Bargaining: “Maybe if I do this rigorous fast, god will make my child okay.”
Depression: “What’s the point? My child is not going to be normal anyway, so why go through all this treatment process.
Acceptance: “It’s going to be fine; we’ll work on the problem together and help our child lead as normal a life as possible.
Kubler-Ross claims that these steps do not necessarily come in the order noted above, not are all steps experienced by all people, though a person will always experience at least two.
What are birth defects?
Birth anomalies can be caused by genetics or environmental factors or a combination of both. Down’s syndrome, spina bifida, anencephaly, congenital heart disease are all examples of birth anomalies. Birth defects are the leading cause of death in children less than one-year-old – causing one in every five deaths. Caring for a child with such conditions is not only emotionally draining. But a financial strain too. In India, three to eight children out of every thousand are born with heart disorders. And two-thirds of them are liable to die before they cross their first birthday. Most of the times, this is because parents cannot afford the cost of treatment. This further adds to the emotional trauma and grief.
Dealing with the trauma
Most parents remain in the denial stage, opting to deal with the baby as if it were normal. This can be dangerous because they neither accept their child nor provide it with the requisite interventions. Since most birth anomalies respond well to early treatment, medical interventions and therapy are very essential in the first few years after birth. Several hospitals and rehabilitations centres now have early interventions clinics for children as young as two and three months old.
Shame and fear of ostracism of their child sometimes also makes parents hide the abnormality, especially in cases where it is not as visible (like with heart disease). Unfortunately, by doing this, parents destroy the support system that friends and relatives can provide. If parents are comfortable with their child, their attitude will translate to the world at large, who will approach them and their offspring with less awkwardness, as well as help ease their burden.
Parents would also do well to stay updated with current information about the condition, and about overall health in general. Some counsellors also suggest that parents should keep a file with a list of questions as well as a reminder of all suggestions and tips given. The file could include emergency numbers as well.
Most importantly, parents need to talk about their feelings with a Counsellor, family members, friends or even their doctor. This can help the parents cope with the various financial emotional implications, help them care for the child better, and most importantly, build a stronger connection between the child and parents.
A Positive attitude
Parents who deal effectively with a disability have truly accepted their child for who he or she is. They analyse things logically and take measures to deal with the problem. They have no qualms about making their child’s problems public. In fact, the parents who really are positive usually resume normal life and make the child a part of their world; they don’t change their whole lifestyle for the sake of the child. Taking a leaf from the book of positive parents may help all the others deal with this challenge much better.