when I was growing up I began to imagine
what it would be like when we had our
first kid you know the drill
new parents treated like demigods
everybody high five and one another and
people passing around the baby like a
Vince Lombardi Trophy after the Super
Bowl well when my wife and I had our
first child it wasn’t quite like that
instead it was more like this
immediately after our son was taken away
to be placed in an area called the
neonatal intensive care unit commonly
referred to as the NICU for short in the
NICU only my wife myself and one other
visitor were allowed to go in to see my
son the area was restricted so there was
very little sound other than the sound
of medical equipment the environment
will go from calm the chaotic every hour
and everyone was always too busy to stop
and engage at the end of the day I
thought I was gonna leave out of there
with my son but instead at the end of
the day all I walked out with was PTSD
for those of you who don’t know what
PTSD is PTSD stands for post traumatic
stress disorder it’s when an individual
has difficulty recovering from
experiencing a terrifying event I’m
definitely not alone five hundred
thousand babies will be born this year
and will be placed in the NICU
like my son essentially that means that
1,400 babies a day go into the NICU that
also means that 1,400 parents are going
to find themselves in a NICU near you
the loss of a child is ranked as one of
the most painful events that an adult
can actually experience now building a
NICU app was originally my wife’s idea
right I decided I would just simply be
moral
and financial support she asked me to
constantly join her team to which I
would politely answer no and now I know
what you’re thinking worst husband award
but just hear me out it wasn’t that I
was saying no to the idea I was saying
no to her because she was the boss that
I never wanted and I was the employee
that she never wanted so I already knew
where this was going
word of advice she was marriage first
folks okay but we didn’t set out just to
build an app because I mean who wants
another app it wasn’t about building
another app it was about building access
when we lost our son we felt hurt lost
hopeless alone we felt as though we had
lost access to hope because we had lost
access to knowledge and understanding
during our time in the NICU let me take
a minute to explain in the NICU the
patient’s the newborn babies they’re
born too early so all of the inner and
outer bits and pieces that make us us
they’re still in the development phases
and what was once connected to the
reliable systems of the mother are now
connected to the systems and the digital
systems of the NICU inside of the womb
of a mother the body of an infant is
quietly formed and constantly monitored
while in the NICU there are constant
alarms and sounds for every change in
the changing and development of that
child instead of the warm caress of the
mother’s hand to her womb there are
nurses and doctors scrambling around
trying to save lives and while the
mother is carrying her child in her womb
under her protection when that child is
in the NICU they’re no longer under your
protection you’re helpless as you stand
and watch others attempt to do what your
body was doing naturally this is
actually where the idea of the app came
the app has three phases of development
that coincide with the three levels of
connection that the parents the medical
providers and the community partners all
desperately need those three levels of
connection are education community and
medical I want to spend some time with
you today to talk about those three
levels of connection the first level of
connection is education seventy-five
percent of parents who end up in the
NICU have no idea that they’re going to
be there that means that they’re not
going to be well prepared they’re not
gonna be well educated in a medical
terminology and the extended family will
not be on standby
my wife had great test results from the
doctor just a week before she was
administered into the hospital we had
books and journal articles and apps that
told us what to do when the child came
home but we didn’t have anything to tell
us what to do when you couldn’t take
your child home it became quite clear
that we needed educational material that
could explain procedures identify the
medical staff that was interacting with
our child every day and identified the
equipment and procedures that were being
carried out each and every single moment
I never mentioned this earlier but I
actually teach anatomy and physiology at
a local college so when my wife and I
were in the NICU she kind of referred to
me as her personal Google I also served
on the children’s development Council at
that hospital so you know I had a few
connections to some different people to
get a few more answers than average
person and even yet we spent most of
every day
finding answers on our own spending time
alone waiting for overwhelm staff
lacking access to answers when we did
meet up with a doctor or get feedback
from a nurse or find an answer online
it became the knowledge that we needed
to help push us forward to continue to
fight it was like as if access to
information kept us connected to the
reality of hope that existed out
of our reach while we were within the
NICU the second level of connection is
community the number of premature births
are actually increasing and the
mortality rate of these premature babies
and their birth mothers are increasing
as well this has created this complex
community of individuals that typical
and traditional resources just don’t
connect with you see when a baby is born
without complications they are embraced
by their family which is typically
embraced by the larger community but
what about the parents and the
grandparents who can’t embrace their
newborns and how does the larger
community embrace them within our app we
provided access to numerous community
partners who provide understanding
resources and support something that
makes this component so necessary is the
phase of the app that allows others
outside of the NICU to connect with
those who are in the NICU when we were
in the NICU only my wife and myself and
one visitor were allowed to visit the
child now this visitor had to be picked
on the exact same day that my child
first went into the NICU and you
couldn’t change who this visitor was so
because of that our parents never had
the chance to change my son’s diaper
like I did community resources provide
those outside of the NICU insight into
how different things are going to be for
the parents inside of the NICU it also
tells them what to do when the lives of
the parents are better bad and worse
people didn’t know how to actually help
us while we were in the NICU as a matter
of fact we weren’t the kind of people
who really asked for help as a matter of
fact we weren’t the kind of people who
asked for much of anything except for a
child one of the things that a community
can do for a family when they’re facing
a time of crisis is to just provide a
safe space a couple of weeks after
losing my son I was in Washington DC
when a police officer pulled up beside
me and asked me
to wind down my window it’s a little
confused so he proceeded to ask me if I
was okay said yeah but he told me that I
had actually been sitting through the
past two green lights and that I was
currently sitting at my third it was at
that moment that I realized that I had
checked out at the time I was looking
for information and found it on PTSD
form others I didn’t find anything on
PTSD for fathers the third and final
level of connection is medical which
connects the family and the healthcare
providers so that they can feel like
teammates during the process now this
level of connection is very personal to
me on several different levels you see
our child was delivered at a teaching
hospital which meant that periodically a
faculty member would come in with a
group of medical students in tow to
observe very sick babies I’d be sitting
in my rocking chair reading to my son
while he was in his incubator when a
faculty member would bring in his or her
students but as they would surround my
son they would block me from access to
my son while class was in session so one
day out of sheer defiance I placed my
rocking chair right beside my son’s
incubator and block them our only
interaction in that moment were glares
of anger for me and glares of
frustration from the young medical
students many months later i sat with a
healthcare educator and we began to
discuss the need for a platform where
everybody could talk about the sacred
without trespassing on sacred ground
another reason for creating this phase
is to give both the healthcare provider
and the parents of a child a safe and
secure way to discuss patient
information this can make a great impact
on things because it can reduce medical
mistakes that are actually harmful and
costly a Journal of American Medical
Association and pediatrics studies
showed that once you added family
members to the process
of reporting medical issues and medical
errors you could boost error reporting
by 16% family members reported incidents
that were otherwise neither detected nor
life is never the same after the loss of
a child we didn’t just lose a child we
lost a promise but by creating this app
that allowed parents and health care
providers and community partners to
connect and communicate in one place
we felt like we created a solution that
would prevent things like this from
happening to other parents you know when
you lose a child you actually feel as
though you’ve lost a purpose in life you
feel demoted stripped of your rank
dishonorably discharged from parental
service you can’t simply turn back the
hand of time
I mean you become an adult simply by
turning 18 and no matter what you do you
can never turn back into adolescent
however when you become a parent it’s
because you’ve had a child added to the
equation so what happens when that child
is immediately removed from that
equation I am actually happy to say that
my wife and I are in the process of
adoption even though my wife and I
played with the idea before it wasn’t
really until moving forward that we
heard a woman give a TED talk on
adoption that same lady that gave that
TED talk on adoption has been personally
walking us through the process and
providing great support
we’ve met wonderful people who have
taken us by the hand to walk us through
the process providing us constant
information and clarity through every
single step some of the people during
the process have even walked the walk of
loss similar to my wife and I for the
first time in years I’m intentionally
looking at toys
researching names looking at schools
planning our first beach trip great loss
brought the need for a great app but as
far as great joy is concerned I don’t
think we need an app for that
thank you [Applause]
what it would be like when we had our
first kid you know the drill
new parents treated like demigods
everybody high five and one another and
people passing around the baby like a
Vince Lombardi Trophy after the Super
Bowl well when my wife and I had our
first child it wasn’t quite like that
instead it was more like this
immediately after our son was taken away
to be placed in an area called the
neonatal intensive care unit commonly
referred to as the NICU for short in the
NICU only my wife myself and one other
visitor were allowed to go in to see my
son the area was restricted so there was
very little sound other than the sound
of medical equipment the environment
will go from calm the chaotic every hour
and everyone was always too busy to stop
and engage at the end of the day I
thought I was gonna leave out of there
with my son but instead at the end of
the day all I walked out with was PTSD
for those of you who don’t know what
PTSD is PTSD stands for post traumatic
stress disorder it’s when an individual
has difficulty recovering from
experiencing a terrifying event I’m
definitely not alone five hundred
thousand babies will be born this year
and will be placed in the NICU
like my son essentially that means that
1,400 babies a day go into the NICU that
also means that 1,400 parents are going
to find themselves in a NICU near you
the loss of a child is ranked as one of
the most painful events that an adult
can actually experience now building a
NICU app was originally my wife’s idea
right I decided I would just simply be
moral
and financial support she asked me to
constantly join her team to which I
would politely answer no and now I know
what you’re thinking worst husband award
but just hear me out it wasn’t that I
was saying no to the idea I was saying
no to her because she was the boss that
I never wanted and I was the employee
that she never wanted so I already knew
where this was going
word of advice she was marriage first
folks okay but we didn’t set out just to
build an app because I mean who wants
another app it wasn’t about building
another app it was about building access
when we lost our son we felt hurt lost
hopeless alone we felt as though we had
lost access to hope because we had lost
access to knowledge and understanding
during our time in the NICU let me take
a minute to explain in the NICU the
patient’s the newborn babies they’re
born too early so all of the inner and
outer bits and pieces that make us us
they’re still in the development phases
and what was once connected to the
reliable systems of the mother are now
connected to the systems and the digital
systems of the NICU inside of the womb
of a mother the body of an infant is
quietly formed and constantly monitored
while in the NICU there are constant
alarms and sounds for every change in
the changing and development of that
child instead of the warm caress of the
mother’s hand to her womb there are
nurses and doctors scrambling around
trying to save lives and while the
mother is carrying her child in her womb
under her protection when that child is
in the NICU they’re no longer under your
protection you’re helpless as you stand
and watch others attempt to do what your
body was doing naturally this is
actually where the idea of the app came
the app has three phases of development
that coincide with the three levels of
connection that the parents the medical
providers and the community partners all
desperately need those three levels of
connection are education community and
medical I want to spend some time with
you today to talk about those three
levels of connection the first level of
connection is education seventy-five
percent of parents who end up in the
NICU have no idea that they’re going to
be there that means that they’re not
going to be well prepared they’re not
gonna be well educated in a medical
terminology and the extended family will
not be on standby
my wife had great test results from the
doctor just a week before she was
administered into the hospital we had
books and journal articles and apps that
told us what to do when the child came
home but we didn’t have anything to tell
us what to do when you couldn’t take
your child home it became quite clear
that we needed educational material that
could explain procedures identify the
medical staff that was interacting with
our child every day and identified the
equipment and procedures that were being
carried out each and every single moment
I never mentioned this earlier but I
actually teach anatomy and physiology at
a local college so when my wife and I
were in the NICU she kind of referred to
me as her personal Google I also served
on the children’s development Council at
that hospital so you know I had a few
connections to some different people to
get a few more answers than average
person and even yet we spent most of
every day
finding answers on our own spending time
alone waiting for overwhelm staff
lacking access to answers when we did
meet up with a doctor or get feedback
from a nurse or find an answer online
it became the knowledge that we needed
to help push us forward to continue to
fight it was like as if access to
information kept us connected to the
reality of hope that existed out
of our reach while we were within the
NICU the second level of connection is
community the number of premature births
are actually increasing and the
mortality rate of these premature babies
and their birth mothers are increasing
as well this has created this complex
community of individuals that typical
and traditional resources just don’t
connect with you see when a baby is born
without complications they are embraced
by their family which is typically
embraced by the larger community but
what about the parents and the
grandparents who can’t embrace their
newborns and how does the larger
community embrace them within our app we
provided access to numerous community
partners who provide understanding
resources and support something that
makes this component so necessary is the
phase of the app that allows others
outside of the NICU to connect with
those who are in the NICU when we were
in the NICU only my wife and myself and
one visitor were allowed to visit the
child now this visitor had to be picked
on the exact same day that my child
first went into the NICU and you
couldn’t change who this visitor was so
because of that our parents never had
the chance to change my son’s diaper
like I did community resources provide
those outside of the NICU insight into
how different things are going to be for
the parents inside of the NICU it also
tells them what to do when the lives of
the parents are better bad and worse
people didn’t know how to actually help
us while we were in the NICU as a matter
of fact we weren’t the kind of people
who really asked for help as a matter of
fact we weren’t the kind of people who
asked for much of anything except for a
child one of the things that a community
can do for a family when they’re facing
a time of crisis is to just provide a
safe space a couple of weeks after
losing my son I was in Washington DC
when a police officer pulled up beside
me and asked me
to wind down my window it’s a little
confused so he proceeded to ask me if I
was okay said yeah but he told me that I
had actually been sitting through the
past two green lights and that I was
currently sitting at my third it was at
that moment that I realized that I had
checked out at the time I was looking
for information and found it on PTSD
form others I didn’t find anything on
PTSD for fathers the third and final
level of connection is medical which
connects the family and the healthcare
providers so that they can feel like
teammates during the process now this
level of connection is very personal to
me on several different levels you see
our child was delivered at a teaching
hospital which meant that periodically a
faculty member would come in with a
group of medical students in tow to
observe very sick babies I’d be sitting
in my rocking chair reading to my son
while he was in his incubator when a
faculty member would bring in his or her
students but as they would surround my
son they would block me from access to
my son while class was in session so one
day out of sheer defiance I placed my
rocking chair right beside my son’s
incubator and block them our only
interaction in that moment were glares
of anger for me and glares of
frustration from the young medical
students many months later i sat with a
healthcare educator and we began to
discuss the need for a platform where
everybody could talk about the sacred
without trespassing on sacred ground
another reason for creating this phase
is to give both the healthcare provider
and the parents of a child a safe and
secure way to discuss patient
information this can make a great impact
on things because it can reduce medical
mistakes that are actually harmful and
costly a Journal of American Medical
Association and pediatrics studies
showed that once you added family
members to the process
of reporting medical issues and medical
errors you could boost error reporting
by 16% family members reported incidents
that were otherwise neither detected nor
life is never the same after the loss of
a child we didn’t just lose a child we
lost a promise but by creating this app
that allowed parents and health care
providers and community partners to
connect and communicate in one place
we felt like we created a solution that
would prevent things like this from
happening to other parents you know when
you lose a child you actually feel as
though you’ve lost a purpose in life you
feel demoted stripped of your rank
dishonorably discharged from parental
service you can’t simply turn back the
hand of time
I mean you become an adult simply by
turning 18 and no matter what you do you
can never turn back into adolescent
however when you become a parent it’s
because you’ve had a child added to the
equation so what happens when that child
is immediately removed from that
equation I am actually happy to say that
my wife and I are in the process of
adoption even though my wife and I
played with the idea before it wasn’t
really until moving forward that we
heard a woman give a TED talk on
adoption that same lady that gave that
TED talk on adoption has been personally
walking us through the process and
providing great support
we’ve met wonderful people who have
taken us by the hand to walk us through
the process providing us constant
information and clarity through every
single step some of the people during
the process have even walked the walk of
loss similar to my wife and I for the
first time in years I’m intentionally
looking at toys
researching names looking at schools
planning our first beach trip great loss
brought the need for a great app but as
far as great joy is concerned I don’t
think we need an app for that
thank you [Applause]
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