[Music] in July of 2012 I handed my 13 month-old
in July of 2012 I handed my 13 month-old
in July of 2012 I handed my 13 month-old baby girl
baby girl
baby girl over to a doctor and asked him to
over to a doctor and asked him to
over to a doctor and asked him to surgically remove the entire left side
surgically remove the entire left side
surgically remove the entire left side of her brain Jocelyn was born with a
of her brain Jocelyn was born with a
of her brain Jocelyn was born with a condition called Hemi Megillah nefeli
condition called Hemi Megillah nefeli
condition called Hemi Megillah nefeli her brain didn’t develop properly in the
her brain didn’t develop properly in the
her brain didn’t develop properly in the womb usually when you look at a picture
womb usually when you look at a picture
womb usually when you look at a picture of the brain it looks sort of like a
of the brain it looks sort of like a
of the brain it looks sort of like a walnut it has two halves and both sides
walnut it has two halves and both sides
walnut it has two halves and both sides are pretty much the same size and shape
are pretty much the same size and shape
are pretty much the same size and shape Jocelyn’s dad and I are at medical
Jocelyn’s dad and I are at medical
Jocelyn’s dad and I are at medical professionals but even we could tell
professionals but even we could tell
professionals but even we could tell when we looked at that first MRI image
when we looked at that first MRI image
when we looked at that first MRI image of our daughter’s brain that something
of our daughter’s brain that something
of our daughter’s brain that something was very wrong the right side was much
was very wrong the right side was much
was very wrong the right side was much smaller and the left side was too large
smaller and the left side was too large
smaller and the left side was too large and it was weirdly shaped we started
and it was weirdly shaped we started
and it was weirdly shaped we started referring to that side of the brain as
referring to that side of the brain as
referring to that side of the brain as the big bad brain because it was so
the big bad brain because it was so
the big bad brain because it was so large it had too many neurons and it was
large it had too many neurons and it was
large it had too many neurons and it was generating a lot of unnecessary
generating a lot of unnecessary
generating a lot of unnecessary electrical activity
electrical activity
electrical activity Jocelyn started to have seizures she had
Jocelyn started to have seizures she had
Jocelyn started to have seizures she had her first seizure when she was 2 months
her first seizure when she was 2 months
her first seizure when she was 2 months old and within a matter of weeks she was
old and within a matter of weeks she was
old and within a matter of weeks she was having several seizures per week her
having several seizures per week her
having several seizures per week her doctor diagnosed her with epilepsy and
doctor diagnosed her with epilepsy and
doctor diagnosed her with epilepsy and we tried putting her on a variety of
we tried putting her on a variety of
we tried putting her on a variety of different anti-seizure drugs but none of
different anti-seizure drugs but none of
different anti-seizure drugs but none of them worked before long she was having
them worked before long she was having
them worked before long she was having multiple seizures per day so what is a
multiple seizures per day so what is a
multiple seizures per day so what is a seizure exactly if you think of your
seizure exactly if you think of your
seizure exactly if you think of your brain as a computer a seizure is a kind
brain as a computer a seizure is a kind
brain as a computer a seizure is a kind of glitch that causes your brain to stop
of glitch that causes your brain to stop
of glitch that causes your brain to stop running its current programs at the end
running its current programs at the end
running its current programs at the end of a seizure the brain has to kind of
of a seizure the brain has to kind of
of a seizure the brain has to kind of reboot itself so if a child like my
reboot itself so if a child like my
reboot itself so if a child like my daughter is seizing many times per day
daughter is seizing many times per day
daughter is seizing many times per day their brain
their brain
their brain ever has a chance to develop properly
ever has a chance to develop properly
ever has a chance to develop properly and learn new things
and learn new things
and learn new things by the time Jocelyn was a year old she
by the time Jocelyn was a year old she
by the time Jocelyn was a year old she was already showing signs of being
was already showing signs of being
was already showing signs of being significantly cognitively delayed as a
significantly cognitively delayed as a
significantly cognitively delayed as a result of all of the seizure activity
result of all of the seizure activity
result of all of the seizure activity she wasn’t crawling she could only sit
she wasn’t crawling she could only sit
she wasn’t crawling she could only sit up for a few seconds at a time and she
up for a few seconds at a time and she
up for a few seconds at a time and she certainly wasn’t walking or talking her
certainly wasn’t walking or talking her
certainly wasn’t walking or talking her doctors warned us that if we couldn’t
doctors warned us that if we couldn’t
doctors warned us that if we couldn’t find a way to stop the seizures she
find a way to stop the seizures she
find a way to stop the seizures she might never walk or talk she might end
might never walk or talk she might end
might never walk or talk she might end up unable to feed herself or care for
up unable to feed herself or care for
up unable to feed herself or care for herself she might not even recognize us
herself she might not even recognize us
herself she might not even recognize us as her mom and dad there was even a
as her mom and dad there was even a
as her mom and dad there was even a chance that she wouldn’t live into
chance that she wouldn’t live into
chance that she wouldn’t live into adulthood her doctors recommended
adulthood her doctors recommended
adulthood her doctors recommended surgery specifically a surgery called
surgery specifically a surgery called
surgery specifically a surgery called hemispherectomy which is the
hemispherectomy which is the
hemispherectomy which is the disconnection and removal of one half of
disconnection and removal of one half of
disconnection and removal of one half of a person’s brain crazy how could taking
a person’s brain crazy how could taking
a person’s brain crazy how could taking out half of our daughter’s brain
out half of our daughter’s brain
out half of our daughter’s brain possibly make her life any better the
possibly make her life any better the
possibly make her life any better the doctors explained to us their reasoning
doctors explained to us their reasoning
doctors explained to us their reasoning they said that since all of the seizures
they said that since all of the seizures
they said that since all of the seizures were coming from the left side of the
were coming from the left side of the
were coming from the left side of the brain if they took out all that
brain if they took out all that
brain if they took out all that malformed tissue the seizures should
malformed tissue the seizures should
malformed tissue the seizures should stop and hopefully with time the healthy
stop and hopefully with time the healthy
stop and hopefully with time the healthy right side of the brain could take over
right side of the brain could take over
right side of the brain could take over some of the functions and
some of the functions and
some of the functions and responsibilities of the missing left
responsibilities of the missing left
responsibilities of the missing left half they they called their decision to
half they they called their decision to
half they they called their decision to recommend hemispherectomy to us a slam
recommend hemispherectomy to us a slam
recommend hemispherectomy to us a slam dunk I joked later with my husband that
dunk I joked later with my husband that
dunk I joked later with my husband that they probably called it a slam dunk
they probably called it a slam dunk
they probably called it a slam dunk because if they called it a no-brainer
because if they called it a no-brainer
because if they called it a no-brainer that might have seemed a little
that might have seemed a little
that might have seemed a little insensitive it might have been a slam
insensitive it might have been a slam
insensitive it might have been a slam dunk for them but it certainly wasn’t
dunk for them but it certainly wasn’t
dunk for them but it certainly wasn’t for us hemispherectomy is known to be
for us hemispherectomy is known to be
for us hemispherectomy is known to be the most invasive surgery in existence
the most invasive surgery in existence
the most invasive surgery in existence today we had so many concerns
today we had so many concerns
today we had so many concerns first of all there was no guarantee that
first of all there was no guarantee that
first of all there was no guarantee that the surgery was definitely going to stop
the surgery was definitely going to stop
the surgery was definitely going to stop the seizures and at minimum after the
the seizures and at minimum after the
the seizures and at minimum after the surgery joseline would be left with
surgery joseline would be left with
surgery joseline would be left with right-sided weakness maybe permanently
right-sided weakness maybe permanently
right-sided weakness maybe permanently all along her body she would probably
all along her body she would probably
all along her body she would probably always walk with a limp
always walk with a limp
always walk with a limp she’d have very limited function in her
she’d have very limited function in her
she’d have very limited function in her right hand and she’d be left partially
right hand and she’d be left partially
right hand and she’d be left partially blind so the cure seemed nearly as
blind so the cure seemed nearly as
blind so the cure seemed nearly as daunting as the disease but the fact
daunting as the disease but the fact
daunting as the disease but the fact remained that despite everyone’s best
remained that despite everyone’s best
remained that despite everyone’s best efforts joseline was still seizing and
efforts joseline was still seizing and
efforts joseline was still seizing and when I say seizing I want you to
when I say seizing I want you to
when I say seizing I want you to understand what that looked like I’m
understand what that looked like I’m
understand what that looked like I’m going to play a very brief video of just
going to play a very brief video of just
going to play a very brief video of just one of her seizures and remember she was
one of her seizures and remember she was
one of her seizures and remember she was having many of these everyday
I know that was difficult to watch it’s
I know that was difficult to watch it’s hard for me to watch five years later we
hard for me to watch five years later we
hard for me to watch five years later we were sick at the thought of taking out
were sick at the thought of taking out
were sick at the thought of taking out half of our child’s brain but we
half of our child’s brain but we
half of our child’s brain but we couldn’t sit by and just watch her
couldn’t sit by and just watch her
couldn’t sit by and just watch her suffer so we made the difficult decision
suffer so we made the difficult decision
suffer so we made the difficult decision to go forward with the hemispherectomy
to go forward with the hemispherectomy
to go forward with the hemispherectomy we scheduled the surgery and we had to
we scheduled the surgery and we had to
we scheduled the surgery and we had to wait a few weeks so during that time we
wait a few weeks so during that time we
wait a few weeks so during that time we of course told our family and friends
of course told our family and friends
of course told our family and friends about our decision the newspaper ran a
about our decision the newspaper ran a
about our decision the newspaper ran a story about it and I started a blog
story about it and I started a blog
story about it and I started a blog called Jocelyn’s journey it wasn’t long
called Jocelyn’s journey it wasn’t long
called Jocelyn’s journey it wasn’t long after the story got out that we started
after the story got out that we started
after the story got out that we started hearing from a lot of people in the
hearing from a lot of people in the
hearing from a lot of people in the public who had very strong opinions that
public who had very strong opinions that
public who had very strong opinions that our daughter our disabled daughter
our daughter our disabled daughter
our daughter our disabled daughter should not be operated on one woman
should not be operated on one woman
should not be operated on one woman warned us that if we allowed the doctors
warned us that if we allowed the doctors
warned us that if we allowed the doctors to do this our daughter would end up a
to do this our daughter would end up a
to do this our daughter would end up a vegetable another man commented on the
vegetable another man commented on the
vegetable another man commented on the newspaper article that it would have
newspaper article that it would have
newspaper article that it would have been better if we had left her on the
been better if we had left her on the
been better if we had left her on the rocks to die like they did in ancient
rocks to die like they did in ancient
rocks to die like they did in ancient times several people commented that they
times several people commented that they
times several people commented that they thought it was horrible that we would
thought it was horrible that we would
thought it was horrible that we would allow the doctors to do something so
allow the doctors to do something so
allow the doctors to do something so barbaric and medieval to our own child
barbaric and medieval to our own child
barbaric and medieval to our own child but you know none of them had to hold my
but you know none of them had to hold my
but you know none of them had to hold my daughter while she seized none of them
daughter while she seized none of them
daughter while she seized none of them would be feeding her or changing her
would be feeding her or changing her
would be feeding her or changing her diaper in 30 years if she lived that
diaper in 30 years if she lived that
diaper in 30 years if she lived that long and none of them had to see the
long and none of them had to see the
long and none of them had to see the pleading in her eyes for someone to take
pleading in her eyes for someone to take
pleading in her eyes for someone to take her pain away every time she suffered
her pain away every time she suffered
her pain away every time she suffered another horrible body racking seizure
Jocelyn underwent a grueling thirteen
Jocelyn underwent a grueling thirteen hour hemispherectomy surgery on July 7
hour hemispherectomy surgery on July 7
hour hemispherectomy surgery on July 7 2012
the surgery was not a success she was
the surgery was not a success she was still seizing even after the
still seizing even after the
still seizing even after the hemispherectomy we were of course
hemispherectomy we were of course
hemispherectomy we were of course devastated but I can’t say that we were
devastated but I can’t say that we were
devastated but I can’t say that we were entirely surprised performing surgery on
entirely surprised performing surgery on
entirely surprised performing surgery on a typical adult brain is incredibly
a typical adult brain is incredibly
a typical adult brain is incredibly difficult it’s brain surgery but imagine
difficult it’s brain surgery but imagine
difficult it’s brain surgery but imagine trying to operate on a tiny baby’s brain
trying to operate on a tiny baby’s brain
trying to operate on a tiny baby’s brain when the brain is malformed and the
when the brain is malformed and the
when the brain is malformed and the parts aren’t located in the right place
parts aren’t located in the right place
parts aren’t located in the right place or some of them are missing altogether
or some of them are missing altogether
or some of them are missing altogether navigation for the surgeon is a
navigation for the surgeon is a
navigation for the surgeon is a nightmare and trying to find and sever
nightmare and trying to find and sever
nightmare and trying to find and sever all of the tiny connections between the
all of the tiny connections between the
all of the tiny connections between the two hemispheres is a huge challenge
two hemispheres is a huge challenge
two hemispheres is a huge challenge it took three additional surgeries but
it took three additional surgeries but
it took three additional surgeries but finally in February of 2013 Jocelyn was
finally in February of 2013 Jocelyn was
finally in February of 2013 Jocelyn was free of the big bad brain so here’s a
free of the big bad brain so here’s a
free of the big bad brain so here’s a fun fact you can throw out at your next
fun fact you can throw out at your next
fun fact you can throw out at your next cocktail party a lot of people ask me
cocktail party a lot of people ask me
cocktail party a lot of people ask me what fills the space where the brain
what fills the space where the brain
what fills the space where the brain used to be and actually in early
used to be and actually in early
used to be and actually in early experiments with hemispherectomy doctors
experiments with hemispherectomy doctors
experiments with hemispherectomy doctors did think that that space had to be
did think that that space had to be
did think that that space had to be filled with something and they
filled with something and they
filled with something and they experimented with a variety of different
experimented with a variety of different
experimented with a variety of different fillers including ping-pong balls
fillers including ping-pong balls
fillers including ping-pong balls eventually they discovered that the
eventually they discovered that the
eventually they discovered that the cavity would simply fill with
cavity would simply fill with
cavity would simply fill with cerebrospinal fluid which is the same
cerebrospinal fluid which is the same
cerebrospinal fluid which is the same fluid that cushions and surrounds your
fluid that cushions and surrounds your
fluid that cushions and surrounds your brain normally so this is an image of
brain normally so this is an image of
brain normally so this is an image of what Jocelyn’s brain looks like now no
what Jocelyn’s brain looks like now no
what Jocelyn’s brain looks like now no ping-pong balls
so what is life like for a person with
so what is life like for a person with only half of their brain Jocelyn is
only half of their brain Jocelyn is
only half of their brain Jocelyn is seizure free she is medication free she
seizure free she is medication free she
seizure free she is medication free she is walking and talking she’s going to
is walking and talking she’s going to
is walking and talking she’s going to school and she’s learning to read and
she has all of the sassy personality
she has all of the sassy personality that you can pack into a six-year-old
that you can pack into a six-year-old
that you can pack into a six-year-old body her neurosurgeon calls her one of
body her neurosurgeon calls her one of
body her neurosurgeon calls her one of his top learning experiences and he
his top learning experiences and he
his top learning experiences and he travels all around the globe sharing her
travels all around the globe sharing her
travels all around the globe sharing her story along with a picture of him with
story along with a picture of him with
story along with a picture of him with her and she’s wearing a t-shirt that
her and she’s wearing a t-shirt that
her and she’s wearing a t-shirt that says I train neurosurgeons like him I
says I train neurosurgeons like him I
says I train neurosurgeons like him I try to share her story whenever I have
try to share her story whenever I have
try to share her story whenever I have the opportunity for several reasons
the opportunity for several reasons
the opportunity for several reasons number one I believe that surgery is a
number one I believe that surgery is a
number one I believe that surgery is a highly underutilized tool in the
highly underutilized tool in the
highly underutilized tool in the treatment of epilepsy right now in the
treatment of epilepsy right now in the
treatment of epilepsy right now in the u.s. about 500,000 children have active
u.s. about 500,000 children have active
u.s. about 500,000 children have active epilepsy about 70% of those are going to
epilepsy about 70% of those are going to
epilepsy about 70% of those are going to find good seizure control with
find good seizure control with
find good seizure control with medication but 30% are going to continue
medication but 30% are going to continue
medication but 30% are going to continue to seize despite taking powerful
to seize despite taking powerful
to seize despite taking powerful cocktails of heavily sedating
cocktails of heavily sedating
cocktails of heavily sedating anti-seizure drugs for many of those
anti-seizure drugs for many of those
anti-seizure drugs for many of those children brain surgery as scary as that
children brain surgery as scary as that
children brain surgery as scary as that sounds
sounds
sounds offers the best chance for seizure
offers the best chance for seizure
offers the best chance for seizure freedom and near normal development
freedom and near normal development
freedom and near normal development unfortunately only about 5% are referred
unfortunately only about 5% are referred
unfortunately only about 5% are referred for surgical evaluation by their
for surgical evaluation by their
for surgical evaluation by their pediatrician or neurologist the referral
pediatrician or neurologist the referral
pediatrician or neurologist the referral rate is lowest for african-american
rate is lowest for african-american
rate is lowest for african-american children and for those with public
children and for those with public
children and for those with public insurance instead of private insurance
insurance instead of private insurance
insurance instead of private insurance secondly I hear from parents all the
secondly I hear from parents all the
secondly I hear from parents all the time who have just received the same
time who have just received the same
time who have just received the same sort of
sort of
sort of stating diagnosis that we did five years
stating diagnosis that we did five years
stating diagnosis that we did five years ago and a surprising number of them have
ago and a surprising number of them have
ago and a surprising number of them have never been given the opportunity to
never been given the opportunity to
never been given the opportunity to speak with anyone about the possibility
speak with anyone about the possibility
speak with anyone about the possibility of surgical intervention I’ll give you a
of surgical intervention I’ll give you a
of surgical intervention I’ll give you a particularly heartbreaking example of
particularly heartbreaking example of
particularly heartbreaking example of this there was a woman who reached out
this there was a woman who reached out
this there was a woman who reached out to me on Jocelyn’s blog her child had
to me on Jocelyn’s blog her child had
to me on Jocelyn’s blog her child had been diagnosed with hemi mega Lynn sefa
been diagnosed with hemi mega Lynn sefa
been diagnosed with hemi mega Lynn sefa Lee in the womb her doctor told her that
Lee in the womb her doctor told her that
Lee in the womb her doctor told her that there was no hope that nothing could be
there was no hope that nothing could be
there was no hope that nothing could be done that her child would simply cease
done that her child would simply cease
done that her child would simply cease uncontrollably until he died and then
uncontrollably until he died and then
uncontrollably until he died and then six months later she found Jocelyn’s
six months later she found Jocelyn’s
six months later she found Jocelyn’s blog she discovered that there was hope
blog she discovered that there was hope
blog she discovered that there was hope but it was too late since then I have
but it was too late since then I have
but it was too late since then I have made it my mission to ensure that every
made it my mission to ensure that every
made it my mission to ensure that every doctor every medical professional and
doctor every medical professional and
doctor every medical professional and every parent knows that there is hope
every parent knows that there is hope
every parent knows that there is hope for children with intractable epilepsy
for children with intractable epilepsy
for children with intractable epilepsy and lastly I want to address the critics
and lastly I want to address the critics
and lastly I want to address the critics the trolls those who looked at my
the trolls those who looked at my
the trolls those who looked at my daughter saw only her diagnosis and
daughter saw only her diagnosis and
daughter saw only her diagnosis and asked why even bother intervening or who
asked why even bother intervening or who
asked why even bother intervening or who questioned us how could you do something
questioned us how could you do something
questioned us how could you do something so horrible to your own daughter
so horrible to your own daughter
so horrible to your own daughter a parent will go to any lengths to save
a parent will go to any lengths to save
a parent will go to any lengths to save the life of their child you don’t need
the life of their child you don’t need
the life of their child you don’t need to understand that decision you just
to understand that decision you just
to understand that decision you just need to be grateful that you’re not the
need to be grateful that you’re not the
need to be grateful that you’re not the one having to make it compassion is
one having to make it compassion is
one having to make it compassion is always the right choice and that is a
always the right choice and that is a
always the right choice and that is a no-brainer
”
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