| In this section we feature some of
the HH stories that have appeared in the international media. The articles
are presented in the following groups:
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Feel
jaded about the Net? Read this - Sydney Morning Herald, 15 June 2001
email group unites families -
article by The Brain Tumor Society
Gelastic Epilepsy & HH: Reports on Samuel Berkovic's
Research
Benign
brain tumor triggers fits, and laughter - Brainland, Neuroscience
Information Center, 22 February 2000
Laughter urge baffles tumour patients - BBC
News, 22 February 2000
Matter
leaves them laughing - Wired News, 23 February 2000
Tumors
a barrel of laughs - Scienceagogo, 23 February 2000
HH Surgery at the RCH, Melbourne
The search for a miracle - The Age, 22 June 2001
Articles about Prof Rosenfeld
'Miracle'
surgeon out to heal world
By
Leela de Kretser
Source:
Herald Sun, 1 January 2002
DUBBED
the "Wizard of Oz" by the families of the children whose lives
he has saved, neurosurgeon Jeffrey Rosenfeld is one of 2001's most
inspiring characters.
Professor Rosenfeld won the hearts of Victorians
when he performed miracle brain surgery on epilepsy sufferer Sebastian
Selo in June.
The Melbourne surgeon
has pioneered a technique to remove a rare tumour called a hypothalamic
haematoma from the brain.
After the procedure, his
patients -- once severely disabled by daily fits -- have recovered to live
normal lives.
Sebastian Selo is now
going to school.
But Professor
Rosenfeld's achievements have not been restricted to the operating
theatres of the Royal Children's and Alfred hospitals.
The inspirational
Melburnian has also served with Interfet forces in East Timor and the
Australian Defence Force in Rwanda.
He is the president of
the Victorian division of the United Nations Association of Australia and
will become commissioner of the St John Ambulance in 2002.
Today, the man who has
seen the face of human suffering in Victoria and around the globe,
believes the world will start to heal itself.
"To start with I
want to start seeing an end to terrorism," he said when asked what
the year would bring.
"Then I think the
world needs to start healing itself.
"Once we've got rid
of the terrorists, if it's possible, we need to start thinking about how
to heal the world and prevent further such extraordinary evil deeds being
perpetrated again."
Most would throw their
hands up when confronted with the question "how do we fix it?".
But Professor Rosenfeld believes he has the answers.
Moreover, he thinks 2002
will be a year when solutions come to fruition.
"What do I see in
the year ahead? I would like to see, as I said, the elimination of
terrorism, but then I'd like to see a focus on peace, on well-being, on
love for one's fellow man and a focus not on one's self, but a focus on
the less fortunate members of our community, so that we can give more of
ourselves towards building up these sort of goals I am talking about.
"I want to see the
developed world focus more on the underdeveloped world to help the
underdeveloped world over these issues of poverty and lack of education.
"We don't know how
lucky we are in Australia, really. When you walk the streets here you
haven't got landmines that could blow you up any time, you haven't got
people around the corner with rifles that can shoot you, or rape you and
steal possessions.
"Most of us have a
home to go to. We have a family.
"If Australians can
focus more on the less fortunate members of our community, the developing
world, how to solve the world's poverty . . . we will go a long way
towards being a valuable contributor to world peace, but also a valued
member of the world community."
*************************************************************
SHY HERO: Prof Rosenfeld Named Victorian of the
Year
By: Leela de Kretser
Source: Herald Sun, Saturday 19 January 2002
Jeffrey Rosenfeld, the neurosurgeon who has given children
around the world a new lease of life with his pioneering surgery, is the
Herald Sun's Victorian of the Year. But Professor
Rosenfeld shrugs off the high praise that has seen him dubbed the ``Wizard
of Oz'' by the families he has helped.
``I am not a miracle worker or a god. I am a normal
person,'' he said when told of his honour.
Professor Rosenfeld won international acclaim last year
with life-changing surgery on British boy Sebastian Selo. Sebastian, 9,
was saved from a life of constant epileptic fits when Professor Rosenfeld
removed a tumour from his brain. Now children around the world are
queueing up for the surgery.
Our 2001 Victorian of the Year dreamed of being a doctor
from the age of five. He is also a team player, a wonderful father and a
talented musician. His success is the result of hard work, determination
and the desire to help others.
The professor said it would not have been possible
without his wife and the surgical team at the Royal Children's Hospital.
Professor Rosenfeld has operated on people from the US, UK, Africa, Papua
New Guinea, Rwanda and East Timor. As well as pioneering the surgical
technique to remove hypothalamic hamartomas from the brain, he has served
as a general surgeon with Australian Defence Forces in East Timor,
Bougainville and Rwanda.
Now director of neurosurgery at the Alfred hospital, he
has just as many talents away from the operating table. He is the
vice-president of the United Nations Association of Australia and
commissioner of St John Ambulance service. And he is a great dad and
talented musician, say his three children, Hannah, 10, Alexander, 8, and
Gabriella, 7. But the modest professor said he accepted the Herald Sun
award only to bring recognition to the people around him.
The list is long: his wife Debbie Kipen, the surgical
team at the Royal Children's Hospital, the people of war-torn countries
such as Rwanda, and the families of the children who have suffered from
severe epilepsy. He said surgery was a team approach. ``And there are lots
of other very skilled people in the team who deserve credit as well.
``I sort of feel embarrassed that the attention is
coming towards me when other people deserve the attention as well.
``But I think the unique thing is that we do have
children from overseas who are coming to Australia, to Melbourne, to me
and the Royal Children's Hospital to have this treatment, which they
believe . . . is the best place to come in all of the world.''
Professor Rosenfeld thanked his wife, Dr Kipen, a
pediatrician at the Royal Children's Hospital, for her part in his
success.
``I couldn't do what I have done without the work my
wife does,'' he said. ``We need to look at it as a partnership. That is
the only way it could work.''
Dr Kipen said she was happy Professor Rosenfeld had
received the award.
``Jeffrey is a very determined man,'' she said. That
determination saw a young boy from Malvern, who performed his first
operation on his pet cat at eight years old, become a pioneer in medicine
and human rights. From Melbourne High School to the University of
Melbourne, and then surgical training at the Royal Melbourne Hospital, he
has served his local community. But he is also known overseas as a
saviour, from his first involvement with the Third World when he travelled
to Port Moresby as a trainee surgeon to his latest trip to East Timor this
month.
In 1995, as a general surgeon in Rwanda, he performed
operations on hundreds of children who had lost limbs in landmine
accidents. Since then he has worked tirelessly with the International
Landmines Council to prevent further atrocities.In 1997, he performed the
first operation to remove a hypothalamic hamartoma on Tom Leray-Meyer, 4,
from Sydney. Before the surgery, Tom was having fits every five to 10
minutes. He had the intellectual capacity of a one-year-old and could
barely walk. This month, Tom's father, Tony, took his eight-year-old son
to the SCG for the first time to see the Test match between Australia and
South Africa.
Families offer heartfelt thanks
PROFESSOR Rosenfeld has changed the lives of families from around the
world. His pioneering surgery technique to remove hypothalamic hamartomas
from the brain has released about 20 children from the torture of constant
epileptic seizures.
``I feel for the torture that these families have gone
through over many years, in many cases since their children were born,''
Professor Rosenfeld said.
``These children have required constant attention, away
from their other children, their work, their life. It has interfered with
their entire being.
``For me to meet them I meet people with tremendous
courage who show enormous love to their children.
''These families were delighted to hear that the Herald
Sun had recognised Professor Rosenfeld as Victorian of the Year.
These are their tributes:
Tony and Alison Leray-Meyer, Sydney, New South Wales:
Our son Tom was the very first child to have this operation, using the
technique adapted by Professor Rosenfeld. Tom underwent surgery in July
1997 at the Royal Children's Hospital. He was four years old at the time.
In the weeks leading up to surgery Tom was having ``visible'' seizures
every five to 10 minutes, and that does not account for the seizures we
could not observe. Our son had been ``intellectually disappearing'' before
our eyes in the first six months of 1997. For our son Tom, he was lucky to
have the entire hamartoma tumour removed and went for 18 months
seizure-free. A miracle had occurred. To this day we believe we had been
given a new child. Recently I was able to take my son to the SCG to see
the cricket test between South Africa and Australia. We are now able to
take him to the movies. He can enjoy a visit to the zoo and is able to
play tennis and cricket. All of these activities were beyond our
comprehension before the operation in 1997.
Louis and Anna Selo, London, England:
No accolades are high enough to express our gratitude to the skill and
expertise of the ``wizard of Oz'' for being able to successfully remove
the tumour that has so afflicted our son, Sebastian, since he was born. He
has given our son the chance to start to lead a quality of life that he
has previously been denied. During our stay in Melbourne we got to know
Professor Rosenfeld well and we found out what a kind, caring and
compassionate man he is.
Lisa and John Soeby, Phoenix, Arizona:
I can't imagine a better choice for Victorian of the Year than Dr
Rosenfeld. My four-year-old son CJ is the next child scheduled for surgery
with Dr Rosenfeld. We have searched the world over, like the other parents
in this wonderful support group, for the answer to our child's horrible
condition. We have not met or heard of any other team of doctors with such
heart and soul -- and a team whose only agenda is to rid children of the
world of this terrible disorder.
Craig and Debbie Faulkner, Adelaide:
Our daughter Rebecca was the fifth child to undergo surgery to remove her
hypothalamic hamartoma by Professor Rosenfeld, Dr Simon Harvey and the
wonderful team at the Royal Children's Hospital. We cannot begin to
describe the profound effect this change has had on our lives. The
neurosurgery has not only rid Rebecca of her debilitating seizures, but
has also greatly enhanced her quality of life. For the first time, she can
do math in her head without getting muddled. Now she can read an entire
novel by herself. She is performing at her year level at school and is
back playing competitive netball. Thanks to Professor Rosenfeld and the
team at RCH, we are able to witness first-hand the daily miracle of a
young girl growing and maturing . . .Our lives have been changed
forever.''
Gerrie Miller, USA:
My nine-year-old daughter Marissa Miller was having up to 15 seizures a
day and her life was deteriorating before our eyes. Constant seizures were
threatening her life and she had no chance at ever living independently.
Doctors in the United States had tried unsuccessfully to abate the tumour
twice, but the surgery did not help her. On May 29, 2001, Dr Rosenfeld
successfully removed Marissa's hamartoma. She had her last seizure the day
before the operation. We are now seeing the real Marissa for the first
time, a happy, intelligent child who had never before had a chance to live
a normal life. We thank God every day for Dr Rosenfeld, Dr Harvey, and the
entire team at the Royal Children's Hospital for giving Marissa the life
she could have never had without them.
Carl Christy, Oregon, USA:
My daughter Lindsey is scheduled for a hypothalamic hamartoma resection on
March 19, 2002.There is no way that we would even consider surgery like
this without the likes of doctors Rosenfeld and Harvey.
Daryl Rue, USA:
Joelle was the first child from the United States to receive this
treatment. After sending her films to many high-profile neuro-surgical
centres throughout the United States, Canada and France, and after three
unsuccessful attempts at brain surgery, Professor Rosenfeld was able to
remove Joelle's tumour that had been causing her havoc for years. Still,
many US doctors in fact are in disbelief in his treatment of this
disorder.
Jill Maben and Rob Mead, London, UK:
It is hard to find anyone in the world with expertise, and Professor
Rosenfeld's track record in this area is second to none. We brought our
son George to Melbourne from London as surgeons at Great Ormond St told us
it was too risky . . .Since Professor Rosenfeld's wonderful surgery George
is like a new child, much happier, calmer, and so much more willing to
interact with people.
Professor Jeffrey Rosenfeld: Profile
Nov 19, 1952 Born in Melbourne
1967-70 Melbourne High School
1971-76 Bachelor of Medicine, Melbourne University
1977-88 General surgical training at the Royal Melbourne Hospital.
Neurosurgical training, including postings at Oxford, Ohio and Port
Moresby
1984 Joined Australian Defence Force
1988 Appointed as a neurosurgeon at the Royal Children's and Royal
Melbourne hospitals. Married Dr Debbie Kipen
1990-93 Appointed head of neurosurgery at Monash Medical Centre
1995 Served as a general surgeon with the Australian Defence Force in
Rwanda
1996-2000 Appointed director of neurosurgery at Royal Children's Hospital
1997 Successfully removes a hypothalamic hamartoma from the brain of Tom
Leray-Meyer, 4
1997-2000 Appointed associate professor in the department of surgery and
pediatrics at Melbourne University
1998-1999 Two tours of duty to Bougainville as a general surgeon
2000 Appointed director of neurosurgery at the Alfred Hospital
2000 Served with INTERFET forces in East Timor as a general surgeon
2000 Professor of neurosurgery at PNG University
2000 Vice-president of UN Association of Australia
2001 Appointed senior medical officer of the 4th brigade
2002 Commissioner of St John's Ambulance
2002 Served with UN forces in East Timor as a general surgeon
The Children
Lindsey Christie
Her
Hope Lies Down Under - Mail Tribune, 8 November 2001
Rebecca Faulkner
A
meeting of minds at last - The Age, 2 July 2001
The Sunday Age, 23 April 2000:
Christopher Leslie
Online
search helps epileptic boys - BBC News, 4 August 2000
Jill Palmer's Medical Casebook: Fighting Fit: Australian Wonder op
cures Chris' epilepsy - 23 November 2000
CHRISTOPHER Leslie is free of epilepsy for the first time in his life -
thanks to a pioneering operation in Australia. Surgeons used a unique
method to successfully remove a tumour from deep inside 10-year-old
Christopher's brain which was causing the fits. Now, just six weeks after
the remarkable surgery, Christopher is back home in London and free of the
epileptic seizures that had dominated his life.
"I know it is a cliche, but this really is a miracle," says his
father Aidan. "The difference in Christopher is amazing. He is doing
really well. Until this operation Christopher was going backwards. He was
having increasing numbers of fits, his learning difficulties were
worsening, and he would have ended up needing constant care. Now he is
starting to go forwards. He no longer has seizures and his communication
skills are developing already."
Christopher was born with a rare form of epilepsy known as gelastic
epilepsy which causes seizures combined with involuntary and fearful
uncontrollable bouts of laughing. It is caused by a brain tumour called a
hypothalamic harmartoma. From birth, Christopher suffered fits, making
strange giggling noises followed by stiffening of his arms and legs. The
condition was diagnosed when he was 10 months old after a series of tests
and scans.
For the next five years drugs controlled the fits, but after working well
at first Christopher gradually became resistant to the medication.
Different combinations of drugs were tried unsuccessfully. He began to
suffer increasing numbers of seizures when he would laugh and make strange
sounds before his body stiffened and jerked uncontrollably and he fell
unconscious to the floor.
In the past two years his condition deteriorated dramatically with more
frequent and severe fits. Christopher was suffering up to 300 a day, often
injuring himself when he collapsed, and needing long periods of sleep
afterwards to recover. These continual seizures damaged his brain and had
a detrimental effect on his developmental progress, learning ability and
behaviour. Surgery to remove the tumour seemed the only answer. But Aidan
and wife Amanda, both 35, were told it was too risky to operate on
Christopher because of the position of the tumour. The couple, who have
two other children Sarah, eight, and six-year-old Daniel were dismayed.
But they refused to give up hope.
In desperation Aidan searched the internet and learned about the unique
techniques being used by Prof Jeffrey Rosenfeld in Melbourne, Australia.
Only three hospitals in world - in Paris, London, and Melbourne - have
experience in operating on Christopher's condition. But the Maudsley
Hospital in South London and the hospital in Paris have low success rates
compared with the Royal Children's Hospital in Melbourne.
"Because the condition is so rare, information and contact with other
families is difficult to find," said Aidan. "I searched the
internet and finally discovered a group of families worldwide which was
started nearly three years ago and has 60 members. It was wonderful to
speak with other people who were going through a lot of the difficulties
we faced each day. And through this group I discovered the new surgical
technique being done in Australia where surgeon had operated and
successfully removed this type of tumour and the children had been seizure
free since."
Aidan immediately contacted Prof Rosenfeld, who after seeing Christopher's
scans, x-rays, and medical notes, agreed to operate. Last month, after
raising the necessary pounds 25,000, Christopher and his parents flew to
Australia leaving their younger children with grandparents.
"It was a very dangerous operation and there were potential
complications," said Aidan of Queen's Park, West London. "But it
was Christopher's only chance. Thankfully he came through it without any
problems. Prof Rosenfeld told us he has removed between 97 and 100 per
cent of the tumour, but we will have to wait a few months until the
swelling inside the brain goes down before he can be certain.
"We were warned Christopher would suffer post-operative seizures but
once these stopped he has not had a single one. He is already speaking and
thinking more clearly. We hope he will be back at school next term and
regain all the knowledge that he missed out on. We have longed for this
day when Chris no longer has to go through another seizure and his
laughter is no longer a matter of fear, distress and the cause of so much
disruption in his life."
PROF Rosenfeld uses a revolutionary technique to remove the tumour which
involves entering the brain from above rather than below. So far he and
his team have operated on 12 children and all are free of disabling
seizures although two have infrequent mild staring spells.
Dr Simon Harvey, director of the Melbourne hospital's
children's epilepsy programme said: "Our surgeons use the
transcallosal technique which involves operating from the top of the brain
rather than below.
"It is safer than the operation performed in the UK where they access
from lower in the skull. Such operations are more hazardous because of the
need to operate close to vital structures such as nerves and blood
vessels.
In our approach these nerves and arteries are not encountered although
there are other risks which include disturbance of memory and hormone
balance."
George Maben-Mead
Online
search helps epileptic boys - BBC News, 4 August 2000
By
George - The Guardian, 24 October 2000
Marissa Miller
Millbrook
child needs your help - WSFA-TV story
A
meeting of minds at last - The Age, 2 July 2001
Jasmine Muddiman
Operation
1st for UK patient - King's Health media release, 15 January 2002
Siahn Pratt
Toddler
to undergo major surgery - The Geraldton Guardian, 15 July 2002
Community
demonstrates its compassion for Siahn - The Geraldton Guardian, 19
July 2002
Joelle Rue
The Age, 27 May 2000
Sebastian Selo
Magic
may happen for a boy and the wizards of Oz - The Age, 7 June 2001
Pioneering brain
op for British boy - BBC News, 19 June 2001
Boy 'doing well'
after brain surgery - BBC News, 23 June 2001
Brain surgery boy
leaves hospital - BBC News, 29 June 2001
A
meeting of minds at last - The Age, 2 July 2001
'Miracle' brain
boy flies home - BBC News, 16 August 2001
A year on, and Seb's singing
- Herald Sun, 27 August 2002:
Sebastian Selo has begun playing ball and singing along
with his twin sister a year after his return from Australia. The British
boy who won the hearts of Victorians after life-saving brain surgery in
Melbourne is improving day by day.
Seb, 10, now enjoys picnics, shopping
sprees and visits to church -- all new delights for a boy whose life was
once ruled by multiple daily seizures. He can say simple phrases such as
``want a drink''.
Anna Selo said her son had been
transformed. ``The biggest achievement for me as a mother is the fact that
Sebastian has changed from disturbed and irritable to a very happy boy.
``He is inwardly much calmer as the source
of irritation (the tumour) has been removed forever.
``He has daily laughing sessions when he
rocks with laughter, slapping his leg, and we accompany him willingly,
although he cannot tell us as yet the reason for his amusement.
``Our house is filled with laughter now
rather than tears as before.''
Seb celebrated the anniversary of his
return home on August 15. On July 19 last year, a Royal Children's
Hospital team led by neurosurgeon Professor Jeffrey Rosenfeld tunnelled
10cm through the centre of Seb's brain to remove a hypothalmic hamartoma.
Seb's family was thrilled last week to
receive a Child of Courage award plaque from the Lions Club of Karingal
and a video of the presentation. But in a tragic reminder that not all
children are as lucky as Seb, the
Victorian boy who accepted the award on Seb's behalf in October died last
month. Shane Kort, 5, who had spinal muscular atrophy, died after a viral
infection.
Mrs Selo said the award was very close to
their hearts and they had cried bucket loads watching the video.
Seb still has epilepsy, but seizures are rarer and no longer rule his
life. He now attends full school days and can count to 20.
``Never before have we heard him praising
food but now, after licking his lips, he often says `nice' and asks for
more,'' Mrs Selo said.
``When asked at school which of his classmates' names begins with the
letter B he answered correctly as if he were a normal boy with a knowledge
of the alphabet.
``He has also started interacting with his brother Martin (16) and his
twin sister Monica, and they often play the ball or sing together.
``When Monica was learning songs for her school performance, Sebastian
learned some lines by heart and sung together with her, to our amazement
and surprise.''
HH Surgery at
RCH, Melbourne
HH
Surgery at Montreal Neurological Institute
HH
Surgery at Barrow Neurological Institute
HH Surgery at the University of Texas
HH Research
The Joshua
Potts Foundation
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