whoever thought I’d be the greatest
growing now hi i’m greg home one of the
neurosurgeons over at the Children’s
Hospital Philadelphia also known as chop
and this is Jesse Taylor my partner
who’s a craniofacial surgeon today we’re
gonna talk about a unique case that we
were involved with of a special set of
twins this is Aaron and Abby Delaney
these are twins and you can tell they’re
joined at the head it’s a term we call
cranial pegas and what we’re gonna do
today is tell their story I’m in sort of
how we were involved in their care and
along the ways we’re gonna describe
something along lines of innovation so a
lot of talks today I’ve been there were
super inspiring and they’ve talked about
innovation and how how important it is
but I want to lay out a little bit of
groundwork that innovation and medicine
is a little bit different the biggest
one is patient outcome so while you may
have an innovative iPhone and it doesn’t
work you bring it to the Genius Bar and
they fix it it turns out patients
families don’t really like the trial and
error method for treating their kids you
don’t say well with the first five
children you have we’re gonna try this
and we’ll get it right on that sixth
time so patient outcomes
you can’t not look at it when you’re
thinking about innovation and so that’s
paramount and it makes it different than
any other sort of field of innovation
the other thing and I think you’ll see
this in our talk is we try to work
within the biological system we’re
trying to utilize the biological system
the healing properties the normal growth
properties and use those to our
advantage and I think that’s one of the
central themes and lastly there’s two of
us here today and it’s not because you
know I don’t have a stamina to do the
entire talk one of the themes is
teamwork and what you’ll see is the
teamwork that we’ve developed wasn’t for
this case the Eagles didn’t win the
Super Bowl by becoming a team the day
before they were going to play this is
teamwork involves sort of working
together and establishing that net
work of working together long before you
try to tackle a difficult task and I
think that’s a really important part of
this so let’s get back to the story this
is Heather Delaney and in May recently
being married finds out she’s pregnant
then she finds out she was pregnant with
twins so put yourself in her shoes she
then finds out at one of her OB visits
something’s wrong and we don’t know what
it means can you imagine how you’d feel
how nervous you’d feel she then says
well where should I go to find out about
this and luckily there’s centers like to
Children’s Hospital Philadelphia with
fetal centers so while still pregnant
with her twins she comes to see me and
some of the other doctors and that’s
where we begin her treatment it’s even
before the kids are born it’s in talking
with her establishing what is gonna
happen what can happen knowing what her
expectations are that’s where the
treatment really starts she’s 20 weeks
pregnant at the time and we go through
all the different scenarios how serious
this is what we think we’re going to do
and then on July 24th we meet Aaron and
Abby for the first time they’re born ten
weeks premature because their cords were
entangling so had to be born or there or
they could have passed away when they
were born they went just a little bit
more than two pounds so two pounds one
ounce and this is when they meet dr.
Taylor as well so this is when we start
the treatment we start talking about it
you don’t want to begin the treatment
the day that you’re going to do it so we
start talking about talking to Heather
and her husband what we’re going to do
what our plans are and what our goals of
treatment are so just to give you a
sense cranial pega switch is this
horrible term sort of conjoined twins at
the head they’re fused with their bone
they’re fused at a number of layers that
dr. Taylor will talk about but to me as
a neurosurgeon the one I care about is
the brain now these are when we say rare
this condition it’s really rare so it
happens about six times for every ten
million live births becoming president
which is super easy nowadays it happens
about once every 10 million live births
it turns out getting hit by an asteroid
it’s just about as common as having a
baby conjoined at the head and being hit
by lightning is it’s just
damn common and that happens all the
time once every million times so we’re
talking about really rare things and
we’re attempting to try a different
treatment strategy to get better outcome
for these kids so that’s the sort of
setting of what we’re doing so as Greg
said we’re like surgical brothers we we
probably spend more time with each other
than we spend with our wives we’re here
today have nothing to worry about but
when you’re thinking about separating
conjoined twins you kind of think about
the different layers what are the layers
of the sandwich that you have to
separate and then once they’re separated
at those layers you’ve got to put back
together the kids at those layers and
and with crania pegas twins there are
essentially four layers to think about
the innermost layers the brain there’s a
covering of the brain called the dura
then you’ve got the cranial bone and the
skin that overlies the bone so those are
the four layers we have to take apart
and those are the four layers that we’re
gonna have to reconstruct now there are
risks and their benefits obviously the
benefits are probably clear to you the
risks associated with them are somewhat
medical and perhaps beyond what we need
to talk about today but the cumulative
risk of this process of separating the
twins and putting them back together
it’s about a mortality rate of 40% so
almost half the time one of the two
twins dies in this process so that’s
something that certainly weighs heavily
on our shoulders is we’re setting about
talking to Heather and Riley about
separating their two daughters one may
die during the process so it kind of
begs the question well why separate them
at all then perhaps they’ll do okay just
living as they are but the bottom line
is there are a lot of things you can’t
do if your conjoint twins you really
can’t eat your soup pine-sol you have to
be fed by two feeds you can’t hug each
other very hard to have any kind of
interpersonal relationship outside of
your relationship with your sister in
this case you can’t sit you can’t go to
school obviously you certainly couldn’t
come to a TED talk so there are a lot of
things you can’t do and as Albert
Einstein said life has certainly not
been designed for the abnormal so as we
weighed the risks and benefits of
separating the twin
versus leaving them as they are mom and
dad chose to go ahead and have the twins
be separated so Gregg and I started
thinking about well what can we draw
upon from our experiences craniofacial
surgeons and neurosurgeons to try to do
this successfully and perhaps a little
more successfully than people have done
it in the past and so we thought about
this technique we use all the time
called distraction osteogenesis where we
can cut bone and gradually pull things
apart to reshape or remodel the skull we
thought maybe we can apply this to these
twins where we cut the bone that that
Kon joins them and then apply a force to
gradually separate them over time give
ourselves a little bit more room to work
if nothing else and so we teamed up with
the Pew sent these which is a subsidiary
of Johnson & Johnson to make custom
helmets that could fit on the top of
each twins head and the helmets would be
connected by screws and as we turn the
screws it would increase the distance
between the two heads and so after a
large amount of trial and error that’s
exactly what we did we took the twins to
the operating room at the age of three
months we cut the bone away from that
that was conjoining the twins and then
we applied this device as you can see
here and here the twins are in the night
of surgery on the Left having just
applied this device and over the next
several weeks each day we turn these
screws and as we turn the screws the
twins were another two millimeters
separated so we achieved a separation of
a little more than an inch which in baby
terms is a lot and after we did this we
did a constriction or compression phase
where we began very slowly diminishing
the surface area that the two twins
shared and so after a couple of months
of that we felt we had maximized what we
were going to get from that we diminish
the conjoint surface area by about 40%
so we were able to obtain additional
room to work we were able to decrease
the amount of surface area that
connected the twins and it basically
took them from this picture on the left
where you see they have a fairly angular
connection which actually has a
mortality risk to it to this more
stovepipe or 180 degree opposite
connection
which has a more penalty benefit we also
gained more critical real estate right
around the eyes so less chance we would
blind the twins as we separated them
during this process once we finished a
distraction and constriction phase of
things we fell back to a more
conventional means of separating twins
called tissue expansion we put these
fancy water balloons beneath the skin of
the scalp where the twins were conjoined
in over a period of several months we
blew up those water balloons by doing
that we’re able to recruit a huge amount
of extra skin that has hair on it like
the scalp to enable us to reconstruct
the scalp of the twins once they’re
separated and that process took about
three months fortunately we’re able to
do it without any complications which
then brought us to the next phase of
separation or the day of separation so
one thing I’d like to talk about right
now is that these phases were in
conjunction this teamwork was at each
phase we were in the operating room
together because we knew that each
successive treatment required the
previous treatments to work and that’s
one of the teamwork facets that’s really
important in this and a lot of times
each person stays in their own room and
they don’t talk to the other person they
end up kind of messing up the next
operation by not doing it right or not
thinking about what needs to be done so
at 10 months of age which is a very
young age we brought the twins to the
operating room and this was going to be
the day of separation one of the other
adjuncts we had to help us in the
operating room was this navigation
system and you can think of it like a
GPS it’s a map that can be loaded from
the MRI and we trace their foreheads and
then I can put a pointer on their heads
or in their brain and know pretty
consistently where I am so it can
increase the safety this is a piece of
technology that helps us the other thing
that I’ll show in a few minutes that we
used was we had 3d models of the twins
that we use to create the the halo
devices and we use in the operating room
to be able to see through the tissue and
know what blood vessels were and where
they were so the first step was to
separate and where the plan was to go
from each side to separate
twins now my favorite philosopher is
Mike Tyson and he said everybody has a
plan until they get punched in the face
so while we had a plan needless to say
we did have to react on on the fly and I
think dr. Taylor will point that out in
a few seconds so the first plan was this
nice cartoon version which looks really
simple to develop the plane between the
two twins it turns out they did share a
little bit of brain and they did share
some blood vessels this is the actual
picture of the plane between the two
twins not so easy so I am good at what I
do
so give me some credit so who had to
separate that and we had three
neurosurgeons that are myself dr.
Kennedy dr. storm were all there to
separate this delicate tissue another
important thing about this case is
usually we’re removing something from a
child a tumor or lesion in this case
both sides of this operation are
important to this family Abby and Erin
they’re both there so anytime you do
something to one twin you can do it to
the other twin so it’s it’s important it
increases the level of or decreases the
error rate that you can have so once we
had completed the separation from the
one side our plan if there was swelling
or something unforeseen where we gonna
close up and then bring them back when
things settle down but that first
separation side went well so we turn
them to their other side and this was
the more dangerous side it was more
dangerous because of this blood vessel
you can see on the on the left hand side
the red area this is the 3d model that
helped us in the operating room and that
blood vessel which goes right down the
middle of your head carries 20% of your
cardiac output even more in a baby and
so bleeding from that babies can in
sanguine eight in a matter of seconds
two minutes so it has to be handled very
delicately these twins shared that blood
vessel so one had to be given part of
that blood vessel and the other one had
had it taken away this is sort of the
cartoon version of it because nobody’s
taking pictures when we are operating on
that part of the blood vessel is a
little two-tenths and here’s another
area where teamwork came in in that room
was an amazing team of anesthesiologists
that we work with every day Allisyn
parade who was leading the team and she
knew we were coming up to the sinus I’ll
have a certain amount of blood in the
room I’ll watch that blood pressure a
little carefully there were nurses in
the room who work with us every day
unfortunately for them I think sometimes
the Jenna and and in Roseanne who knew
how I take down this sinus how I operate
on it so there was an unspoken sort of
teamwork there again you don’t want to
recreate teamwork when you need it you
wanted to sort of be established at the
time so what we did is we dissected
around the sinus and then we had to cut
across it and separate the twins and we
were able to do that pretty successfully
then a few minutes later after I had
finished the separation there was a
one-two-three in a very profound moment
where for the first time in their life
these twins were separated so that was a
pretty magical moment you know it was
actually three to one and then they were
separated Gregg but you get the picture
so all of a sudden 3 2 1 and we pulled
the twins apart and it was totally
silent that room he could hear a pin
drop everyone was totally focused it was
awesome
and then all of a sudden I’m back on
here we are trying to reconstruct the
four layers we talked about and so again
this is where teamwork comes in because
we pulled upon Greg’s neural surgical
expertise and my craniofacial expertise
to try to do this in a way that was
going to allow the twins to have the
best outcome possible and one of the
things we used that was innovative was a
biological patch to reconstruct the dura
that could be interchanged over the
ensuing weeks as needed the other
innovation was to not completely close
the scalp but to leave a little bit of
scalp open we want to leave plenty of
room for the brain and everything else
in there to swell and not be injured by
the swelling ie see increased amounts of
pressure which the brain doesn’t want so
I think two of the other innovations
were to not close the scalp completely
and to use this dural allograph to allow
for increased amounts of room for the
brain as well and then we put the twins
in a medically induced coma for three
weeks and during that three week period
Greg and I would periodically take them
back to the operating room take a look
at the brain make sure it was healthy
make sure it had everything it needed to
to do as well as it could exchange the
dural patch and then slowly slowly as
the inflammation subsided and the
swelling subsided we closed more and
more of the scalp until the scalp was
totally closed and that process took
about three weeks but three weeks later
with Greg and I watch in the ICU we woke
but what was really fascinating is to
see their eyes open and you see him look
around the room and they kind of track
on each other and they had never seen
each other and they kind of reach out to
each other and we put him in the crib
together and they were able to touch
each other and see each other for the
first time and just like that magical
moment when we were able to separate the
twins this was a really magical moment
for Gregg and for me
so here Abby and Aaron are about four
weeks after surgery they’re learning how
to eat all four extremities work their
hands their arms they’re learning how to
eat they’re learning how to COO and gaga
and all that kind of stuff about a month
after surgery we took these pictures on
the left and in about six weeks after
surgery we all celebrated their first
birthday at chop and it was a unicorn
themed we loved it and it was again so
gratifying to see that each twin eating
eating a little bit of birthday cake and
interacting with us with their mom with
their dad as if none of this had ever
happened here we are in November of 2017
as the kids get ready to leave the
hospital about two and a half months
after surgery not only wasn’t one of the
earliest separations ever recorded but
they actually left the hospital quicker
than any other set of twins and I think
Greg and I stand before you today taking
some credit for all the work that was
done but these are the people you see in
this picture you see the mom and the dad
holding the twins you see Greg and me
but everybody else in this picture
deserves a huge amount of credit in this
type of thing can only be done in a team
and it takes a team with a lot of
expertise like that that exists at the
Children’s Hospital of Philadelphia to
make something like this feasible so the
it was really important and satisfying
for the family to have them home for
their first Christmas they spent their
entire life in the hospital and in a way
I think Heather was a little homesick
for us I think she grew a family in that
hospital there was an Amish family that
literally built a crib and a wagon for
the children so that she could move them
around before they were separated so she
really became like a family member which
makes it even harder when when problems
can occur so I I set this up as a
timeline
however these aren’t individual time
points they really like to point out how
with each time point we were thinking
about what the next level of surgery was
going to be and trying to integrate our
previous procedure to try to give us
success with the next with the next
operation and I think utilizing that
technique where we were working together
from the start set set us up for success
and set these twins up for success also
all of the additional work with the
family and showing them the 3d models
we’re allowed them to be part of that
operation they knew what was happening
in the operating room when you give your
child over to someone they knew what was
going on and that was important so the
early engagement was really a key to
this this kind of operation and
something we’ve learned and we use in
some of our other complex surgeries the
other is the multidisciplinary team you
can’t do this in a vacuum it can’t be
the expert of everything and working
together is important but you need to
start that working together in that
relationship well before you try to
tackle something that might be a little
complex the last thing and I think the
reason that we were as successful as we
were as we harnessed the normal healing
process of these twins by doing it at a
younger age it was more risk because of
the blood loss but their brains
recovered faster they healed better
theirs we were able to get these kids
through without an infection which is
unheard of
and we were able to the skin heal better
and we were able to do things in a
different fashion so this is our example
of innovation although I’d like it to be
our story I think it’s really more
Heather story than just about anyone’s
story no question and you know we’re
very happy that things turned out as
well as they as
and so while we’d like to do the surgery
more often I don’t think these types of
surgeries come come by that often but
we’re happy that the twins are doing
well and this is just the beginning of
their journey so we get text when they
when the twins are not walking a little
bit and talking so we’re very satisfied
thank you [Applause]
growing now hi i’m greg home one of the
neurosurgeons over at the Children’s
Hospital Philadelphia also known as chop
and this is Jesse Taylor my partner
who’s a craniofacial surgeon today we’re
gonna talk about a unique case that we
were involved with of a special set of
twins this is Aaron and Abby Delaney
these are twins and you can tell they’re
joined at the head it’s a term we call
cranial pegas and what we’re gonna do
today is tell their story I’m in sort of
how we were involved in their care and
along the ways we’re gonna describe
something along lines of innovation so a
lot of talks today I’ve been there were
super inspiring and they’ve talked about
innovation and how how important it is
but I want to lay out a little bit of
groundwork that innovation and medicine
is a little bit different the biggest
one is patient outcome so while you may
have an innovative iPhone and it doesn’t
work you bring it to the Genius Bar and
they fix it it turns out patients
families don’t really like the trial and
error method for treating their kids you
don’t say well with the first five
children you have we’re gonna try this
and we’ll get it right on that sixth
time so patient outcomes
you can’t not look at it when you’re
thinking about innovation and so that’s
paramount and it makes it different than
any other sort of field of innovation
the other thing and I think you’ll see
this in our talk is we try to work
within the biological system we’re
trying to utilize the biological system
the healing properties the normal growth
properties and use those to our
advantage and I think that’s one of the
central themes and lastly there’s two of
us here today and it’s not because you
know I don’t have a stamina to do the
entire talk one of the themes is
teamwork and what you’ll see is the
teamwork that we’ve developed wasn’t for
this case the Eagles didn’t win the
Super Bowl by becoming a team the day
before they were going to play this is
teamwork involves sort of working
together and establishing that net
work of working together long before you
try to tackle a difficult task and I
think that’s a really important part of
this so let’s get back to the story this
is Heather Delaney and in May recently
being married finds out she’s pregnant
then she finds out she was pregnant with
twins so put yourself in her shoes she
then finds out at one of her OB visits
something’s wrong and we don’t know what
it means can you imagine how you’d feel
how nervous you’d feel she then says
well where should I go to find out about
this and luckily there’s centers like to
Children’s Hospital Philadelphia with
fetal centers so while still pregnant
with her twins she comes to see me and
some of the other doctors and that’s
where we begin her treatment it’s even
before the kids are born it’s in talking
with her establishing what is gonna
happen what can happen knowing what her
expectations are that’s where the
treatment really starts she’s 20 weeks
pregnant at the time and we go through
all the different scenarios how serious
this is what we think we’re going to do
and then on July 24th we meet Aaron and
Abby for the first time they’re born ten
weeks premature because their cords were
entangling so had to be born or there or
they could have passed away when they
were born they went just a little bit
more than two pounds so two pounds one
ounce and this is when they meet dr.
Taylor as well so this is when we start
the treatment we start talking about it
you don’t want to begin the treatment
the day that you’re going to do it so we
start talking about talking to Heather
and her husband what we’re going to do
what our plans are and what our goals of
treatment are so just to give you a
sense cranial pega switch is this
horrible term sort of conjoined twins at
the head they’re fused with their bone
they’re fused at a number of layers that
dr. Taylor will talk about but to me as
a neurosurgeon the one I care about is
the brain now these are when we say rare
this condition it’s really rare so it
happens about six times for every ten
million live births becoming president
which is super easy nowadays it happens
about once every 10 million live births
it turns out getting hit by an asteroid
it’s just about as common as having a
baby conjoined at the head and being hit
by lightning is it’s just
damn common and that happens all the
time once every million times so we’re
talking about really rare things and
we’re attempting to try a different
treatment strategy to get better outcome
for these kids so that’s the sort of
setting of what we’re doing so as Greg
said we’re like surgical brothers we we
probably spend more time with each other
than we spend with our wives we’re here
today have nothing to worry about but
when you’re thinking about separating
conjoined twins you kind of think about
the different layers what are the layers
of the sandwich that you have to
separate and then once they’re separated
at those layers you’ve got to put back
together the kids at those layers and
and with crania pegas twins there are
essentially four layers to think about
the innermost layers the brain there’s a
covering of the brain called the dura
then you’ve got the cranial bone and the
skin that overlies the bone so those are
the four layers we have to take apart
and those are the four layers that we’re
gonna have to reconstruct now there are
risks and their benefits obviously the
benefits are probably clear to you the
risks associated with them are somewhat
medical and perhaps beyond what we need
to talk about today but the cumulative
risk of this process of separating the
twins and putting them back together
it’s about a mortality rate of 40% so
almost half the time one of the two
twins dies in this process so that’s
something that certainly weighs heavily
on our shoulders is we’re setting about
talking to Heather and Riley about
separating their two daughters one may
die during the process so it kind of
begs the question well why separate them
at all then perhaps they’ll do okay just
living as they are but the bottom line
is there are a lot of things you can’t
do if your conjoint twins you really
can’t eat your soup pine-sol you have to
be fed by two feeds you can’t hug each
other very hard to have any kind of
interpersonal relationship outside of
your relationship with your sister in
this case you can’t sit you can’t go to
school obviously you certainly couldn’t
come to a TED talk so there are a lot of
things you can’t do and as Albert
Einstein said life has certainly not
been designed for the abnormal so as we
weighed the risks and benefits of
separating the twin
versus leaving them as they are mom and
dad chose to go ahead and have the twins
be separated so Gregg and I started
thinking about well what can we draw
upon from our experiences craniofacial
surgeons and neurosurgeons to try to do
this successfully and perhaps a little
more successfully than people have done
it in the past and so we thought about
this technique we use all the time
called distraction osteogenesis where we
can cut bone and gradually pull things
apart to reshape or remodel the skull we
thought maybe we can apply this to these
twins where we cut the bone that that
Kon joins them and then apply a force to
gradually separate them over time give
ourselves a little bit more room to work
if nothing else and so we teamed up with
the Pew sent these which is a subsidiary
of Johnson & Johnson to make custom
helmets that could fit on the top of
each twins head and the helmets would be
connected by screws and as we turn the
screws it would increase the distance
between the two heads and so after a
large amount of trial and error that’s
exactly what we did we took the twins to
the operating room at the age of three
months we cut the bone away from that
that was conjoining the twins and then
we applied this device as you can see
here and here the twins are in the night
of surgery on the Left having just
applied this device and over the next
several weeks each day we turn these
screws and as we turn the screws the
twins were another two millimeters
separated so we achieved a separation of
a little more than an inch which in baby
terms is a lot and after we did this we
did a constriction or compression phase
where we began very slowly diminishing
the surface area that the two twins
shared and so after a couple of months
of that we felt we had maximized what we
were going to get from that we diminish
the conjoint surface area by about 40%
so we were able to obtain additional
room to work we were able to decrease
the amount of surface area that
connected the twins and it basically
took them from this picture on the left
where you see they have a fairly angular
connection which actually has a
mortality risk to it to this more
stovepipe or 180 degree opposite
connection
which has a more penalty benefit we also
gained more critical real estate right
around the eyes so less chance we would
blind the twins as we separated them
during this process once we finished a
distraction and constriction phase of
things we fell back to a more
conventional means of separating twins
called tissue expansion we put these
fancy water balloons beneath the skin of
the scalp where the twins were conjoined
in over a period of several months we
blew up those water balloons by doing
that we’re able to recruit a huge amount
of extra skin that has hair on it like
the scalp to enable us to reconstruct
the scalp of the twins once they’re
separated and that process took about
three months fortunately we’re able to
do it without any complications which
then brought us to the next phase of
separation or the day of separation so
one thing I’d like to talk about right
now is that these phases were in
conjunction this teamwork was at each
phase we were in the operating room
together because we knew that each
successive treatment required the
previous treatments to work and that’s
one of the teamwork facets that’s really
important in this and a lot of times
each person stays in their own room and
they don’t talk to the other person they
end up kind of messing up the next
operation by not doing it right or not
thinking about what needs to be done so
at 10 months of age which is a very
young age we brought the twins to the
operating room and this was going to be
the day of separation one of the other
adjuncts we had to help us in the
operating room was this navigation
system and you can think of it like a
GPS it’s a map that can be loaded from
the MRI and we trace their foreheads and
then I can put a pointer on their heads
or in their brain and know pretty
consistently where I am so it can
increase the safety this is a piece of
technology that helps us the other thing
that I’ll show in a few minutes that we
used was we had 3d models of the twins
that we use to create the the halo
devices and we use in the operating room
to be able to see through the tissue and
know what blood vessels were and where
they were so the first step was to
separate and where the plan was to go
from each side to separate
twins now my favorite philosopher is
Mike Tyson and he said everybody has a
plan until they get punched in the face
so while we had a plan needless to say
we did have to react on on the fly and I
think dr. Taylor will point that out in
a few seconds so the first plan was this
nice cartoon version which looks really
simple to develop the plane between the
two twins it turns out they did share a
little bit of brain and they did share
some blood vessels this is the actual
picture of the plane between the two
twins not so easy so I am good at what I
do
so give me some credit so who had to
separate that and we had three
neurosurgeons that are myself dr.
Kennedy dr. storm were all there to
separate this delicate tissue another
important thing about this case is
usually we’re removing something from a
child a tumor or lesion in this case
both sides of this operation are
important to this family Abby and Erin
they’re both there so anytime you do
something to one twin you can do it to
the other twin so it’s it’s important it
increases the level of or decreases the
error rate that you can have so once we
had completed the separation from the
one side our plan if there was swelling
or something unforeseen where we gonna
close up and then bring them back when
things settle down but that first
separation side went well so we turn
them to their other side and this was
the more dangerous side it was more
dangerous because of this blood vessel
you can see on the on the left hand side
the red area this is the 3d model that
helped us in the operating room and that
blood vessel which goes right down the
middle of your head carries 20% of your
cardiac output even more in a baby and
so bleeding from that babies can in
sanguine eight in a matter of seconds
two minutes so it has to be handled very
delicately these twins shared that blood
vessel so one had to be given part of
that blood vessel and the other one had
had it taken away this is sort of the
cartoon version of it because nobody’s
taking pictures when we are operating on
that part of the blood vessel is a
little two-tenths and here’s another
area where teamwork came in in that room
was an amazing team of anesthesiologists
that we work with every day Allisyn
parade who was leading the team and she
knew we were coming up to the sinus I’ll
have a certain amount of blood in the
room I’ll watch that blood pressure a
little carefully there were nurses in
the room who work with us every day
unfortunately for them I think sometimes
the Jenna and and in Roseanne who knew
how I take down this sinus how I operate
on it so there was an unspoken sort of
teamwork there again you don’t want to
recreate teamwork when you need it you
wanted to sort of be established at the
time so what we did is we dissected
around the sinus and then we had to cut
across it and separate the twins and we
were able to do that pretty successfully
then a few minutes later after I had
finished the separation there was a
one-two-three in a very profound moment
where for the first time in their life
these twins were separated so that was a
pretty magical moment you know it was
actually three to one and then they were
separated Gregg but you get the picture
so all of a sudden 3 2 1 and we pulled
the twins apart and it was totally
silent that room he could hear a pin
drop everyone was totally focused it was
awesome
and then all of a sudden I’m back on
here we are trying to reconstruct the
four layers we talked about and so again
this is where teamwork comes in because
we pulled upon Greg’s neural surgical
expertise and my craniofacial expertise
to try to do this in a way that was
going to allow the twins to have the
best outcome possible and one of the
things we used that was innovative was a
biological patch to reconstruct the dura
that could be interchanged over the
ensuing weeks as needed the other
innovation was to not completely close
the scalp but to leave a little bit of
scalp open we want to leave plenty of
room for the brain and everything else
in there to swell and not be injured by
the swelling ie see increased amounts of
pressure which the brain doesn’t want so
I think two of the other innovations
were to not close the scalp completely
and to use this dural allograph to allow
for increased amounts of room for the
brain as well and then we put the twins
in a medically induced coma for three
weeks and during that three week period
Greg and I would periodically take them
back to the operating room take a look
at the brain make sure it was healthy
make sure it had everything it needed to
to do as well as it could exchange the
dural patch and then slowly slowly as
the inflammation subsided and the
swelling subsided we closed more and
more of the scalp until the scalp was
totally closed and that process took
about three weeks but three weeks later
with Greg and I watch in the ICU we woke
but what was really fascinating is to
see their eyes open and you see him look
around the room and they kind of track
on each other and they had never seen
each other and they kind of reach out to
each other and we put him in the crib
together and they were able to touch
each other and see each other for the
first time and just like that magical
moment when we were able to separate the
twins this was a really magical moment
for Gregg and for me
so here Abby and Aaron are about four
weeks after surgery they’re learning how
to eat all four extremities work their
hands their arms they’re learning how to
eat they’re learning how to COO and gaga
and all that kind of stuff about a month
after surgery we took these pictures on
the left and in about six weeks after
surgery we all celebrated their first
birthday at chop and it was a unicorn
themed we loved it and it was again so
gratifying to see that each twin eating
eating a little bit of birthday cake and
interacting with us with their mom with
their dad as if none of this had ever
happened here we are in November of 2017
as the kids get ready to leave the
hospital about two and a half months
after surgery not only wasn’t one of the
earliest separations ever recorded but
they actually left the hospital quicker
than any other set of twins and I think
Greg and I stand before you today taking
some credit for all the work that was
done but these are the people you see in
this picture you see the mom and the dad
holding the twins you see Greg and me
but everybody else in this picture
deserves a huge amount of credit in this
type of thing can only be done in a team
and it takes a team with a lot of
expertise like that that exists at the
Children’s Hospital of Philadelphia to
make something like this feasible so the
it was really important and satisfying
for the family to have them home for
their first Christmas they spent their
entire life in the hospital and in a way
I think Heather was a little homesick
for us I think she grew a family in that
hospital there was an Amish family that
literally built a crib and a wagon for
the children so that she could move them
around before they were separated so she
really became like a family member which
makes it even harder when when problems
can occur so I I set this up as a
timeline
however these aren’t individual time
points they really like to point out how
with each time point we were thinking
about what the next level of surgery was
going to be and trying to integrate our
previous procedure to try to give us
success with the next with the next
operation and I think utilizing that
technique where we were working together
from the start set set us up for success
and set these twins up for success also
all of the additional work with the
family and showing them the 3d models
we’re allowed them to be part of that
operation they knew what was happening
in the operating room when you give your
child over to someone they knew what was
going on and that was important so the
early engagement was really a key to
this this kind of operation and
something we’ve learned and we use in
some of our other complex surgeries the
other is the multidisciplinary team you
can’t do this in a vacuum it can’t be
the expert of everything and working
together is important but you need to
start that working together in that
relationship well before you try to
tackle something that might be a little
complex the last thing and I think the
reason that we were as successful as we
were as we harnessed the normal healing
process of these twins by doing it at a
younger age it was more risk because of
the blood loss but their brains
recovered faster they healed better
theirs we were able to get these kids
through without an infection which is
unheard of
and we were able to the skin heal better
and we were able to do things in a
different fashion so this is our example
of innovation although I’d like it to be
our story I think it’s really more
Heather story than just about anyone’s
story no question and you know we’re
very happy that things turned out as
well as they as
and so while we’d like to do the surgery
more often I don’t think these types of
surgeries come come by that often but
we’re happy that the twins are doing
well and this is just the beginning of
their journey so we get text when they
when the twins are not walking a little
bit and talking so we’re very satisfied
thank you [Applause]
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