Maybe Terri Too?

by Jan A. Larson

The death of Terri Schiavo was a tragedy in many ways. One of
the most tragic aspects of the case was that even though Terri
was allowed to lie in a disabled state for 15 years while litigation
and allegations swirled, she did not receive a thorough diagnosis
of her condition (no MRI or PET scan was ever performed) or
the therapy that might have provided her with some opportunity
for a more meaningful and productive life.

It is possible that the autopsy of Terri's body will reveal the
extent of the damage to her brain and will provide some idea of
what her true condition was. Of course, knowing what her
capabilities were after her death is meaningless. It is too late to
help her now.

Some readers may have experience with friends or relatives that
have suffered brain injury and others may be familiar with
amazing cases of people that were written off by the "experts"
only to experience miraculously recovery, at least to some
extent.

Last week I received an email from a lady in the U.K. that had
read my recent column entitled, "The Bigger Picture" [1]. She
told the tale of her son -- also written off by the "experts" but
who, through the persistence of both of them and the care of
some dedicated medical professionals, "came back" from severe
brain injury. Her email is reprinted below with permission.


--
Terri Schiavo's parents are not being selfish, delusional or
misguided. My son was also a "Terri". I am an American who
lives outside London and my 23-year-old son received a
traumatic brain injury due to a hit & run accident 3 years ago.
We were fortunate that we lived a short distance from one of the
few specialist neuro critical care units in the U.K. Against all
odds and due to the brilliant work of the neurosurgeons my son
survived. He was however diagnosed as PVS.

If I had been living in the U.S. and he had been married, I too
could have found myself in the position that the Schindlers are
facing. Luckily for both of us we were living in a country where
there is a different outlook on what constitutes "quality of life".

I have seen the video clips on the Schindler's website and I
believe with all my heart that Terri is not PVS but minimally
responsive. I was fortunate to be able to have Adam treated at
the Royal Hospital for Neurodisability (RHN) [2] in London.
This is one of the few hospitals in the world that specializes in
treating people who are PVS, minimally responsive and people
suffering from locked-in syndrome. In addition to his brain
injury my son had sustained severe bodily injuries, was
paralysed done his left side, was deaf, mute, epileptic and
blinded in one eye. He was tetraplegic. I spent 15 hours a day for
8 months in this 300+ bed unit. So I lived day in and day out
with some of the "Terries" of this world. My son was one of
them.

At RHN they have developed a world-renowned therapy
(SMART) which was used every day to test each of my son's
senses for even the most minute reaction. These reactions were
closely monitored and recorded every day for consistency. It
took almost 5 months before there were any consistent reactions
from my son. Once there was an indication that Adam was "in
there" the therapy teams then worked on bringing Adam out. The
Adam referred to in this link [3] is my son. RHN has two
sections, the rehab/hospital section and the residential
accommodation. Many of the residents have been successfully
drawn out of PVS and MR states. To see the lives that many of
them lead today, participating in social activities, using
computers and advanced technology to communicate is amazing.

My son came out of his minimally responsive state thanks to the
efforts of the team at RHN and was eventually moved to a
mainstream brain injury unit for another 8 months. Adam is
currently in a residential neuro rehab home and has been coming
home every weekends and holiday for almost 2 years. We expect
to have him home again full time by the end of this year. His
rehab will continue at home with the support of a full therapy
time and round the clock careers.

I had been told by the neurosurgeons that most of what we
would get back with my son would come back within the first 6
months and after that we would get very little back. Wrong! He
has been assessed by many neurologists over the last 3 years and
most of them have given us very bleak predictions of the future.
WRONG!

Today my son has been assessed as having the university-level
intelligence he had prior to the accident. He is no longer deaf or
mute. He is able to speak so that most of what he says can be
understood. He spells out what we cannot understand. He no
longer takes medication for his epilepsy. He is able to walk
across the hydrotherapy pool with help to stabilize himself and
can do 5 lengths of the parallel bars. He has regained most of his
long-term memory and his short-term memory started to come
back 4 months ago. He is able to use the computer to play games
and send e-mails to his friends. He has retained most of his
original personality and sense of humour, is regaining
continence and has now had his stomach tube taken out so that
he is able to eat a full diet again and feed himself. He has been
weaned off his epilepsy medication completely and remains
seizure free. He also brushes his teeth and is able to wash
everything but his back, bum and feet while sitting in a special
shower. He has had the sight in his blinded eye return. He
remembers the words to almost every song he has ever heard and
sings along with them--although I do think he could benefit from
singing lessons! When not doing therapy he spends his time
socializing, listening to music, watching TV, shopping, going to
rock concerts and having meals out in restaurants.We have just
been given the OK to transport him in a conventional car seat
rather than his wheelchair and we are taking him on vacation to
the Canary Islands in April.

The "experts" have given up trying to predict how far my son
will progress. They are just watching in amazement. Of course
his recovery is due to the loving and continued interaction and
stimulation of his family and friends, occupational therapists,
physiotherapists, speech & language therapists, hydrotherapists,
neuropsychologists, music therapists, computer therapists,
acupuncturist, cranial chiropractor, Chinese medicine specialist,
specialised dental services, technology specialists, bio-medical
engineers, case managers, neuro optical rehabilitation,
wheelchair specialists and a legal team second to none.

How could people get my son's prognosis so wrong? I have
learned first-hand that there is a big difference between
neurologists, neurosurgeons and rehabilitation specialists. The
rehabilitation specialists had a much more "let's wait and see"
attitude because they see the progress that people like my son
make everyday and the neurologists and neurosurgeons were on
the whole very pessimistic.

So, that brings us to the question of could Terri Schiavo have
been misdiagnosed. Very definitely, particularly if her
assessments have been done by neurologists or neurosurgeons
rather than rehab specialists. We will never know if Terri could
have benefited from the same type of intervention that my son
has had. She will unfortunately never be given that opportunity.
She will be dead.

If you look at any of the work of Dr. Keith Andrews from RHN
who is one of the world's leading authorities on PVS you will
see that his work has shown that over 40% of those thought to be
PVS may have been misdiagnosed.

http://www.donoharm.org.uk/doctorsfed/spring2004/5.htm

http://www.comarecovery.org/artman/publish/ReportOnTheVegetativeState.shtml

What a shame that people have not erred on the side of caution
and have condemned Terri to such a horrible death. It terrifies
and sickens me that I, too, could have had to fight to keep my
son alive. Funnily enough, at the time I was fighting to get the
funding for my son's treatment I said to Dr. Andrews that I wish
I was back at home (meaning in the good old U.S.A.) where I
wouldn't have to fight for the funds for his rehabilitation. Dr.
Andrews chuckled and replied, " no you wouldn't have to fight
for funding, they would have just switched off his machines." I
found this hard to believe at the time but I am now shocked at
how right he was.

Lois J. Harden
lois_hardenathotmail.co.uk

--
[1] http://www.pieofknowledge.com/archive/032705_Bigger_Picture.html[2] http://www.rhn.org.uk
[3] http://www.rhn.org.uk/doc.asp?catid=209&docid=183

-----
Jan A. Larson publishes a weekly commentary, "What is the Deal?" at the Pie of Knowledge http://www.pieofknowledge.com
His work also appears on NewsBull http://www.newsbull.com,
OpinionEditorials http://www.opinioneditorials.com,
American Daily http://www.americandaily.com
and The Conservative Voice (http://www.theconservativevoice.com).