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?
It's a very hard question to answer. It all depends entirely on the mental makeup of the parent and their financial status perhaps, especially if the child requires medical care. It is a burden when it comes to poorer parents and my heart goes out to the ones who really love the child but are unable to help them. Your post very diligently highlighted the torment faced by the parent, the child and the care giver.
ReplyDeleteexactly coral ...having a special child imposes an impossible burden on financially weaker families...and its a loss-all situation where nobody wins
DeleteTo let live, the society needs to be supportive, accommodative & progressive. Hence abort is the right option in this part of the world!
ReplyDeletelets hope we reach a state when society can provide the support that individuals need in such cases
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