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BY MANALI ROHINESH
Sharon is a happy,
sunshine-in-her-smile-and-eyes kind of girl. She
has great plans for her future, including doing
exactly what she wants with her life and finding
that mythical ‘Mr Right’. But behind the smile,
something lurks in her eyes, and that is death. At
the end of the day, after work, she goes to keep a
bedside vigil over her kid brother, Dominick.
Sharon is 23 and Dominick is 18. At their age,
both should have been looking forward to Christmas
cheer. But God had other plans for Dominick this
time. He was born prematurely at 7 months and with
a condition called hydrocephalus, in which the
cerebrospinal fluid in the brain does not
automatically flow into the spinal cord. It builds
up in the brain and makes the brain swell. This,
in turn, puts pressure on the skull, which also
grows grotesquely out of proportion.
People with hydrocephalus need to have a
ventricular shunt put in their necks which will do
the work of nature i.e direct the fluid from brain
to the spinal cord. But shunts do not always work
for everyone. It is, after all, a foreign object
fixed at the base of your skull in your neck. Most
babies born with this problem don’t live very long
and if they do, they will have to live with some
complication or the other.
Dominick was fine till last year, when fate
finally caught up with him. The shunt stopped
functioning properly and he was at the hospital on
and off. And he’s been in the ICU for over a month
now. His brain has been cut open so many times and
probed, that this mighty organ itself resembles a
scar tissue now! He’s suffered so many infections
of the fluid that doctors had to inject
antibiotics directly into the brain. The pain
never stops; one problem just leads to another.
Doctors can’t put in a new ventricular shunt
because it doesn’t seem to work. The brain is a
canny organ – all through this misery, it retained
Dominick’s speech, sight, memory and of course,
the ability to think and feel pain. Then, while he
was fighting the infection, another problem
cropped up. Doctors found pockets of air with some
compartments of floating debris (for lack of
better word) in the brain, which is not supposed
to be there.
So Dominick underwent an endoscopy in one part
of the brain because the doctors will just not
take the risk of doing it all over. Initially,
they wanted to know how the brain responds to this
intrusive cleaning up. Most of us dread going to a
dentist for a clean-up. Just imagine that
happening inside your brain!
After the endoscopy, Dominick was unconscious
for days and he never recovered since.
Technically, his brain is still functioning and he
moves his head. His heart and lungs and kidneys
are of an 18-year old. But he’s lost his speech,
vision and his memory and is paralyzed from his
head down.
His parents have had to witness and live
through all this. His father is falling apart at
the seams because all the medical knowledge in the
world can’t help his son. His mother spends her
days, now over a month, in the room next to the
ICU and watches in shock as her son dies slowly in
front of her eyes.
They are truly in a dilemma. Their son will
always be in a vegetative state but because
somehow, the rest of his organs are working fine,
he could actually live like this for maybe another
30-40 years. On Tuesday, December 2004, the doctor
at Wockhardt Hospital told them to take him home,
suspecting that nothing more could be done for
him.
Now I understand why euthanasia is such a
humane option, if it was given to us in moments of
hopeless grief like this.
When Sharon told me of her brother, I found
this website called
www.hydroassoc.org, which claims to be a
support page for hydrocephalic patients and their
families. They have neurosurgeons listed
state-wise on their site. I think the ratio is
roughly 3:8 i.e for every 3 doctors in India who
specialize in neurosurgery, there are 8 in
California alone!
But when I wrote to them about Dominick and
asked for some of the doctors’ email IDs, I got
this odd response from a Pip Marks who said that
the American doctors could not be contacted via
email because they would not give advice to
patients living outside the US. This, after the
doctors very willingly gave out their postal
addresses, telephone nos and fax nos on the
website!
I replied to Mr Marks telling him that “I don't
think she wants to fly to the US for medical
treatment. She just wants to know what else could
be done right here. I'm sure giving an opinion
shouldn't be a problem. If it is, then all these
doctors being mentioned on your website are merely
advertising themselves and also defeats the
purpose of what you are doing.”
Pip Marks then replied: I don't see why your
friend can't fax the doctors with her medical
questions and some of her history. I don't know if
a doctor will respond personally with an opinion
or not. The usual procedure in the USA is that you
can only consult with a specialist after getting a
referral from a general practitioner.”
So, even opinions doesn’t come easy. Obviously,
all options seem to be closing now for poor
Dominick. God bless him.
MANALI ROHINESH
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