Mentally Retarded Children – Lifelong Burden?

Mentally Retarded Children – Lifelong Burden?

Mondays are usually extra busy morning in a hospital. It’s as if patients store up all their illnesses over the weekend just to get to the doctor on a Monday morning. As such it becomes fairly difficult to concentrate too much on individual patients on Monday mornings. At the end of the day all you remember is a blur of patients collectively and it takes a rare kind of patient or a rare disease to stay in your memory. I met such a one this morning- a young girl, accompanied by her mother and complaining of vague and unspecified pains.

The girl looked to be around 19-20 years although the registration slip had her age as 23 and she looked quite normal seen from afar. But the moment she was seated in front of me, her mother pulled out a big folder of her old case notes and passed them to me with the explanation that the daughter was mentally deficient. This spared me the trouble of going through my well rehearsed Monday morning routine of asking   questions in a rapid fire series and I prepared to spend more time with this one patient despite the long lines standing behind and getting impatient at the delay caused  by a single patient.

Before I get into their story, I am sure everyone has heard about how people are classified by their IQ levels into genius, normal, idiot, moron and retard etc. As the patients mother explained and I soon found out myself, though she looked to be a well gown young woman, the mental age of the patient before me was somewhere around 5 or 6 years, she talked and behaved in a child like manner and I had to deal with her like I usually do with children- explore their symptoms without them helping as you cannot always get clear cut answers. After I had diagnosed her problems and gave her the necessary prescriptions, the mother made the patient sit in one corner of the consult room and in turn sat down before me and started crying.

In the midst of her tears she told me "please give her something to put her out of her misery permanently". Shocked, I was thinking over how to respond to such a statement when she went on to say "or give me something too, so i too can go away from this miserable life". As my nurses immediately got up from their seats and approached near us to try and rescue me, i waved them away with a sign that I wanted to talk further with her. I asked her gently what made her want to commit a double suicide. She was more than willing to share her troubles.

What she said was primarily about the trouble it took to take care of a mentally retarded child and a female child at that. She explained about how the child had looked normally initially but had only been diagnosed as retarded as she grew up and missed all her milestones- like crawling, walking talking etc. How her husband had spent all his savings on the child to take care of her special needs and had finally disappeared one day leaving the mother to bear all the financial burdens in addition to caring for the child.

She explained about her running from pillar to post to get someone to take her of her while the mother went out to work. She explained about her helpless condition of a full grown woman who is unable to understand that her clothes are sodden with her menstrual blood and runs around the street in full view of everyone. She went on and on about the practical difficulties of bringing up a retarded child and how it had destroyed her family life- both economically and personally. At last when she had got everything off her chest, she accepted the prescription I handed over and went away.

After the last patient of the day had left, there was an impromptu discussion about this case among all the staff members. The consensus was that it was a curse to bear a child who is mentally retarded. I am sure that many of you will disagree with the above statement. But I ask you to temper your criticism on the grounds that only people who have been through it will be able to understand the full extent of the tragedy of bringing up such a child.

Despite the cutesy pie kid showed in the Tamil movie Anjali directed by Mani Ratnam, taking care, lifelong, of a not-normal kid is really practically tough. A lot of social activists, including celebrities who advise people about how "special needs children" are well, special don’t understand all the ramifications of what it takes to be the parent or guardian of a child like that. Many families have broken up unable to bear the burden of taking care of such children. Remember that they have to not only make allowance for the child during their lifetime but also to make sure that there is someone else to take over on their deaths.

And this is the reason why genetic testing becomes crucial during pregnancy. Currently there are many tests available to accurately diagnose genetic anomalies in early pregnancy stage itself. With the easy availability of genetic tests like amniocentesis- drawing amniotic fluid directly from the fetus to check for chromosomal abnormalities- the parents have access to earlier and better information on what they are going to face in future and they can then make a clear cut decision on whether they are willing to go ahead with the conception in case of any genetic diseases being diagnosed in the early stages itself. If they decide to abort the fetus in the early stages of conception itself then there are no medical or legal issues involved - only moral.

Some religions like Roman Catholicism is strictly against abortion- even early term -when the fetus is just a bunch of cells and doesn’t have any individualism- remember the Savita Hallapa death in Ireland? Others like Hinduism are far more accommodating when it comes to abortion- with the theory that it’s all destiny or fate and the soul will be reincarnated somewhere else. Meanwhile the law is ambiguous on this - medical termination of pregnancy is legal under the law as long as the mother’s health is not affected in any way. So the decision is left purely to individuals.

Obviously, there is no one size fits all solution to this dilemma. Each family has to make its own decision- based on their religious, economic and social conditions. In the end the only people who are compulsorily made caregivers for the rest of their lives are the mother and father and they alone have a right to decide whether they are willing to make a lifelong commitment or not. No one else- including doctors, bleeding heart social activists or dominating grandparents have the right to decide for the woman whether she wants to keep the child or not. In this the final choice is the mothers decision and anyone else who presumes to advise would be better told to shut up and get lost. If they so decide the parents can try for a healthier child on their next pregnancy for there is no scientific evidence that the next child may have the same condition too.

And on a related note, i wish more people would realize how lucky they are to have a healthy, normal child. All those who abandon or abuse their kids don’t understand the many things which have to go right during conception and labor for a child to be born normal - mentally and physically. If you think it’s easy you should check out the crowds waiting outside the infertility treatment centers. So people should   know that having a normal child is indeed a genetic miracle. Ask any doctor who works with kids and he would tell you the same.

So what do you think? Do you feel that it is wise to abort a fetus with genetic diseases? To avoid future complications? Or do you think it’s better to accept it as fate? Care to comment?