in the heart of Charlottesville Virginia
00:03
surrounded by the Blue Ridge Mountains
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there is a story being told it is a
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story with history it is a true story
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about amazing people a story of
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challenges when I walked into the NICU
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it was it was scary my mom was the one
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that sits in the hospitals and sits in
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the waiting rooms with me and I remember
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sitting in the doctor's office just
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holding her rocking her and just crying
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I remember we got home and laid in bed
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and cried but this is also a story of
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happiness and triumph it was scary but
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at the same time there were people there
00:43
to help get me through the scary part it
00:46
was an overwhelming wonderful feeling so
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twice GBAS bailed me out saved my life
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it was absolutely amazing the first time
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I got the hold on well it feels great to
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be able to have two healthy happy
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we are so lucky that we're here above
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all this is a story about a community
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that dreamed of a healthier future for
01:08
its children but also just just a caring
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community of support from the mountains
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to the ocean and from DC to Danville
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everyone benefits by the opening of the
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battle building I credit the the the
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community with bringing this need to the
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attention of the above the medical
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center this is the story of UVA
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Children's Hospital I'm Robert Van
01:32
Winkle and in 1826 Thomas Jefferson
01:35
recruited dr. Robley dunglison as in the
01:38
diseases of women and children from
01:40
Keswick England to be the first
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professor of medicine and Anatomy at the
01:44
University of Virginia thus began UVA s
01:47
commitment to children's health care now
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that commitment was bolstered in 1923
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when the department of pediatrics was
01:54
established with dr. Lawrence royster as
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its chair in 1982 the Children's Medical
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Center was formed and in 1985 the
02:03
Children's Hospital held its first
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Children's Miracle Network telethon now
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in 2014 UVA Children's Hospital will
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turn yet another page in it's already
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storied history book when I arrived here
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in 2002 what I observed was a dream for
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what was what is called a free-standing
02:26
Children's Hospital that's an idea that
02:29
was developed back in the 40s that has
02:32
all of the services that you need for
02:35
children both inpatient and outpatient
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under one roof and my observation was
02:41
that that dream of the freestanding
02:44
Children's Hospital wasn't likely to
02:47
ever become a reality and so I felt I
02:50
had some difficult news to share with
02:54
the community about how we might make
02:56
this dream a reality as opposed to a
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continuing dream for the community and
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the way we were able to do that is to
03:06
create this concept of a free leaning we
03:10
provide complete care in patient care we
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right intensive care we provide
03:17
outpatient care and we have extensive
03:19
programs of day surgery and other kind
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of community outreach programs as well
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but we provide it integrated with the
03:30
overall University of Virginia Medical
03:33
Center community supports important for
03:35
a Children's Hospital because you really
03:37
can't have one without the other we are
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a part of the community and we need the
03:42
community's involvement and support to
03:45
guide us in what's what's needed the
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Charlottesville community has always had
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a deep passion for its Children's
03:51
Hospital this was highlighted during the
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annual Children's Miracle Network
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telethon held each summer for 26 years I
03:58
came in February and that June I
04:02
attended my first telethon and it was
04:04
held here in the classroom and the
04:06
gymnasium on the seventh floor it was
04:09
amazing the the enthusiasm and warmth
04:13
and just love of the concept of the
04:17
Children's Hospital they approached us
04:19
to be a family to be interviewed for
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their telethon and we were nervous at
04:25
first but it was exciting that they
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offered us the invitations we were like
04:29
yeah definitely
04:30
and then they threw in that Ronde Barber
04:33
would be there and he would actually get
04:36
to hold our kids they introduced us and
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I remember he had a football football
04:41
was the same size yeah so that was very
04:44
cold and we actually he writes
04:47
children's books so he autographed books
04:50
for the kids as positive as the telethon
04:52
experience was for Adam and Kristen
04:55
nothing could have prepared them for
04:56
what they felt the first day they left
04:58
Ashton and Ethan behind in the NICU I
05:01
remember we got home and laid in bed and
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cried we just laid down and cried
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because it's you just imagined carrying
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the little carriers and
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bringing your children home I knew they
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were in good hands yeah we knew that
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they were where they needed to be that
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they had the whole team looking after
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him it wasn't one doctor it was a team
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of doctors and it wasn't just a nurse it
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was a respiratory therapist and a nurse
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and I remember going in the boys were
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born May 4th and so it was very close to
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Mother's Day and I remember going in and
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they had made me little Mother's Day
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cards the nurses did so just nice little
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treats like that for the print 'yes it
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was the genuine affection that they felt
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from the doctors and nurses that set
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them at ease they knew our family they
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knew the dog's name they had a picture
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of our dog up in the room any family I
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mean they were just very very welcome to
05:56
us and we kept in touch with two of the
05:57
nurses and they came to the boys the
06:00
first birthday party so that was cool
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there have been many patients featured
06:05
on the telethon over the years but one
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of the more memorable stories is that of
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Neely Moffitt's I was the first
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adolescent heart transplant done at UVA
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waiting for my heart was one of the most
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difficult
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because you never knew what time what
06:22
time that was going to come or anything
06:24
but in in a way that helped I remember
06:28
very well today I told Neely that she
06:30
needed a heart transplant she just had a
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heart catheterization we reviewed all of
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her films and she was recovering from
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her heart catheterization and she
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started crying and screaming at anything
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no no never never I'm dying with my old
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heart it was scary
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I remember thinking well you care and
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you love with your heart so and they
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take my heart out and put another one in
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there am I gonna care and love for other
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people and forget about I mean little
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questions like that that logically you
07:00
know to answer to but kind of
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emotionally you have this fear
07:05
curiosities I think it would be harder
07:07
to be the parent because my mom she's
07:15
incredible when they wheeled her into
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surgery nearly was afraid and she said
07:20
that I don't want you to let me die and
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as she was wheeled into surgery those
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were the words that kept echoing and my
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boy I mean in my mind from her voice
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with a successful heart transplant
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behind her Neely was able to just be a
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kid all grown up and now a nurse Neely
07:40
was engaged to be married and was
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excited to move forward with her life
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when she had another health scare
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because we figured it was probably a
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migraine or something like that and they
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did a CT scan and found the brain tumor
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and then when he got up here almost both
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of us at the same time we're like we
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want to go ahead and get married before
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I had the brain surgery to have the
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tumor removed in about 24 hours a
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wedding was planned
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we had the minister that we were
08:10
planning to have for the wedding and we
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set up the fourth-floor waiting area for
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both vowels and everything and my aunt
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went and found a dress and we ended up
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about two hours after a kidney biopsy I
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ended up having
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wedding and it was a beautiful wedding
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I had doctors and nurses come and my
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family filled up the waiting room it was
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very nice to have the ability to do that
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Neely made it through surgery and beat
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cancer she also had a second successful
08:43
heart transplant at age 28 now she's a
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school nurse and a mother of two
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beautiful adopted children so how does
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she feel about that young girl featured
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on the telethon all those years ago I
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don't see myself as a hero or a miracle
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or I see the people that do you know the
09:03
doctors and the nurses and the research
09:05
people I see them as it so I I'm a
09:09
success story and that's great obviously
09:11
but it's a little embarrassing
09:14
in 1957 you VA health system opened the
09:17
doors to the children's rehabilitation
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center renamed Kluge children's
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rehabilitation center or ke CRC in 1988
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this facility revolutionized care for
09:28
families of children with a wide range
09:30
of developmental delays and physical
09:32
disabilities a national leader in the
09:35
field K CRC stood out for its
09:37
family-centered approach to care I would
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say we're fundamentally here to help
09:43
them participate in their community so
09:48
for a child that means their role as a
09:50
student their role as a sibling in the
09:53
home that role as a Cub Scout Girl Scout
09:56
soccer player baseball player you know
10:00
anything in the community even before it
10:02
became popular we practiced
10:05
family-centered care here so we learned
10:07
very quickly that we could do a better
10:10
job for the child if we listened to
10:12
their families and and so we've been
10:14
trying to build on that and take
10:16
advantage of that as we move towards the
10:19
battle building family-centered care has
10:21
become a focus for the way we deliver
10:24
care we essentially integrated that
10:27
model into care
10:28
first that the Kluge children's
10:30
rehabilitation
10:30
Center and then we exported it if you
10:33
will down the road to the rest of the
10:35
Children's Hospital the family-centered
10:37
care that the Rehabilitation Center
10:39
became known for has now become a focus
10:42
for all of you VA Children's Hospital
10:44
when a child has an illness serious or
10:49
otherwise it involves the whole family
10:51
we're really making a patient and family
10:54
experience the best that it can be but a
10:56
child really does need a family-centered
10:59
approach for this to be successful for
11:01
them and I think that's the difference
11:03
between pediatrics and adults we have to
11:06
see it in a more holistic sense if you
11:08
will we have to see it as a journey for
11:11
the family along with the patient and it
11:14
takes a lot of people to help people
11:16
learn that journey they come as a unit
11:18
with the family you should leave here
11:21
feeling like we listen to every one of
11:24
your concerns and that we know we're in
11:26
touch with what people need when you
11:28
need an entire team to give our children
11:31
the best care that they can have and to
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make sure that it's family oriented
11:35
family-centered because without that
11:37
family there's no true healing or health
11:39
to be had for parents receiving
11:42
difficult news about their children that
11:44
family-centered approach to care can
11:46
make all the difference the diagnosis
11:49
for us was quite a surprise because it
11:52
the whole thing arose just from Brandon
11:54
having some shortness of breath he would
11:57
never imagine hearing those words that
11:58
your child was diagnosed with cancer and
12:00
of course it completely caught us off
12:02
guard I remember sitting in the doctor's
12:05
office just holding her rocking her and
12:07
just crying
12:11
be in the hospital for the rest of my
12:13
life
12:14
they didn't know the cans and stuff
12:17
that's when we met dr. Brian belly a who
12:20
is amazing
12:22
whom we love very much when you hear
12:25
diagnosis of cancer you never use the
12:27
word lucky but that was actually a word
12:29
that I thought of quite often like wow
12:31
we are so lucky that we live in a town
12:35
with a medical facility that's top-notch
12:37
that's doing this research right here
12:39
that he's getting treated up right here
12:41
we don't have to travel across the state
12:43
it's right here I recall when I was 9
12:47
years old I lost one of my good friends
12:49
to leukemia and at the time leukemia was
12:53
almost universally fatal the survival
12:57
right now is in excess of 80% so we've
13:01
come a long way particularly in my field
13:04
in pediatric oncology we've seen
13:06
tremendous innovations so when I first
13:09
started here at the University
13:10
20-plus years ago if we treated a child
13:14
with acute lymphocytic leukemia their
13:16
chance of being cured was about 60 or
13:19
70% and now it's 90 percent 90 plus
13:22
percent for most patients today and
13:24
that's through all of our collaborations
13:27
with basic science with clinical science
13:30
all the research that we do it was an
13:32
overwhelming wonderful feeling you know
13:34
you've never thought that day would come
13:36
but once it did it was also very
13:39
emotional you know the number chemo but
13:42
you know the what-ifs come you know and
13:44
just a very emotional but
13:47
happy glorious day it was like a huge
13:50
weight was lifted off of not only our
13:52
shoulders but his shoulders our
13:54
experience your UVA is phenomenal we
13:57
have a wonderful relationship the staff
14:00
clinic and also in the seventh floor
14:02
it's our second home our second family
14:06
UVA Children's Hospital relies on
14:08
community support to help families
14:10
throughout the region a member Hospital
14:12
of Children's Miracle Network UVA
14:14
Children's Hospital has hosted a number
14:17
of memorable events throughout the years
14:19
a couple of things that that stick out
14:22
in my mind are the Klockner walks the
14:25
enthusiasm and all the various groups
14:28
that person died guess the phone banks
14:31
the enthusiasm and they brought you know
14:33
lot special shirts that they would wear
14:36
for the telethon my name is Beth Kenan
14:38
and I am a member of the Children's
14:40
Hospital Committee here at UVA and I've
14:43
been stuffing envelopes and helping out
14:45
since I was eight years old to see the
14:47
different groups that come in and want
14:49
to help out from little children at the
14:50
telethon used to want to put coins in a
14:53
fish tank to the contribution that the
14:55
battles have made this is a it's truly a
14:58
community investment everyone wins with
15:01
this and it's not just the
15:02
Charlottesville Albemarle community it
15:04
is I think from the mountains to the
15:07
ocean and from DC to Danville everyone
15:09
benefits so we're a miracle family here
15:12
at the UVA Children's Hospital and we've
15:14
been to many events where we've seen the
15:16
Children's Miracle Network organization
15:19
come together and help the hospital here
15:21
with the Dance Marathon which was a
15:23
great wonderful fun events we attend
15:26
every year and every year we actually
15:28
bring our patients our families our own
15:31
families we participated in dancing with
15:33
the students and having a great time and
15:35
last year we had a flash mob so yes I
15:38
was asked to choreograph a flash mob for
15:41
the Children's Miracle Network Stamps
15:45
marathon here at UVA and it was a
15:48
wonderful event to say thank you to the
15:51
students who worked many many long days
15:53
and hours on this wonderful event we
15:56
surprised them as I thank you and did it
15:58
dance for them which was so much fun
16:00
doctors nurses lots of patients patients
16:04
family and friends all came out and to
16:06
the Stan's whenever I go to the grocery
16:08
store food line we live near food line
16:11
and they're always like do you want to
16:13
support the Children's Miracle Network
16:15
and I'm like absolutely added on to my
16:17
grocery bill so just the help that they
16:21
gave us we definitely want to give back
16:24
so that other families can experience
16:27
that I was actually a Walmart recently
16:29
and I saw the small little incubator you
16:32
know right in the middle when you walk
16:33
in and there were people putting another
16:35
change in there and it was just a
16:36
wonderful feeling to know that you know
16:39
a a lot of people care and a lot of
16:41
people want to give to this wonderful
16:44
Hospital for years we've had so many
16:48
volunteers come here and help you know
16:51
Madison house from from the UVA
16:53
undergraduate campus the Shriners the
16:56
has been a huge supporter of our
16:59
community every year they do a Christmas
17:01
party for our kids Santa Claus makes an
17:04
appearance they buy toys for all of the
17:07
children and then have a great party
17:09
where they come and entertain our kids
17:12
one of my favorites was this local group
17:16
of motorcyclists it was a motorcycle
17:18
club who every summer would have a rally
17:21
and would show up usually on the other
17:23
side of the building and we'd bring all
17:26
the inpatients out so they could all sit
17:29
on Harley's and have their pictures
17:31
taken you know so it's just tremendous
17:35
just knowing that we're in a community
17:38
that cares that much about their
17:40
children's health and that are willing
17:42
to pitted not only resources but time
17:45
it's it's a wonderful place to work it's
17:48
a wonderful place to live I think you
17:51
support it because it does amazing
17:53
things you support it because the child
17:58
next door might might end up as a
18:00
patient here I think it you know it
18:03
touches every part of the community it
18:06
has a lasting impact it's pioneering
18:09
health care for children you know that
18:12
pediatric heart transplants happen here
18:14
that's a pretty remarkable thing in a
18:17
relatively rural area to have a hospital
18:19
that can do that well in the year 2013
18:22
we performed eight so far this year
18:25
we've performed two most recently a week
18:27
and a half ago based on the population
18:31
of the state we would expect that there
18:32
would be on an average year nine
18:35
children per year in the state of
18:36
Virginia that would require transplants
18:38
my son was transferred here in 2013
18:43
because he was born with hypoplastic
18:45
left heart syndrome and here they did
18:48
the heart transplant for us only the
18:50
right side of his heart had developed
18:52
and normally we would do a three-step
18:55
procedure and reroute it so that the
18:57
blood would continue to be oxygenated
19:00
and flow correctly but the right side of
19:02
his heart was enlarged and the net it
19:05
wasn't worth trying the next step so we
19:07
decided to go with the transplant we
19:09
live in Blacksburg and it's about two
19:11
and a half hours away but this is where
19:14
everyone had recommended us to be and
19:16
once we got here it was just it felt
19:18
right and I really enjoyed everyone that
19:20
I first met he stayed here of course
19:23
until after his first surgery which was
19:26
in December and we were possibly going
19:29
to be able to go home but then we
19:30
decided to go with the transplant so he
19:33
would need to stay here it was a rough
19:37
time here he went into cardiac arrest
19:39
we signed the paperwork for the
19:42
transplant in January and he got his
19:44
transplant in March so we were here the
19:46
whole time and it was it was hard but it
19:50
was it was worth it it's great we love
19:55
it up here as soon as we walk in the
19:56
door she's the little celebrity
19:57
everyone's like oh the debut and you're
19:59
so big and his sister comes in and runs
20:02
off with everyone who gets books like
20:04
colors and it's just it's great it's I
20:07
so we're like the little celebrities
20:09
here as soon as we walk in I see
20:10
everyone like you wouldn't think that we
20:12
didn't live here and look like here all
20:14
the time
20:16
it's great I love it here
20:19
it's funny because we are we're homies
20:22
but now EBA has moved into our particle
20:27
app and now with the opening of the new
20:31
outpatient building and the announcement
20:33
of UVA Children's Hospital as one of US
20:36
News and World Report's best children's
20:38
hospitals UVA Children's Hospital has a
20:41
lot to celebrate of the 30 years this is
20:45
probably the most exciting time for me
20:46
by moving to the battle building we will
20:49
have child friendly and family friendly
20:52
spaces that really serve the special
20:56
needs of children in particular children
20:58
with complex medical needs but in
21:01
addition we'll be able to bring all of
21:03
the sub specialties together all in one
21:05
place and so we'll be able to integrate
21:08
the care if a child has multiple health
21:10
needs they could see multiple providers
21:12
at the same time and have multiple
21:14
ancillary services that are provided and
21:17
so much of our population of children
21:19
now just has a lot of medical complexity
21:23
there's a lot of kids that have needs
21:25
they really go across divisions across
21:29
the medical and other therapy services
21:32
that we provide so that having everybody
21:35
under one roof really will meet more
21:39
needs for more children but all this
21:42
will occur in a state-of-the-art
21:43
facility that is child-friendly
21:46
family-friendly efficient easy to get to
21:49
and will really be a quantum leap in the
21:54
quality of the services we can provide I
21:55
think that the beauty for the patient is
21:58
they can park in the 11th Street parking
22:00
structure they don't need to go outside
22:02
they can go into the clinic building and
22:04
on any of the floors of the building
22:06
they can get every pediatric need you
22:07
can imagine taken care of we're gonna
22:09
make every attempt to coordinate visits
22:11
so that in the shortest period of time
22:13
possible a shopping list of specialists
22:16
can be arranged to evaluate a child if
22:18
it's necessary so I think from a family
22:20
standpoint that is very exciting to
22:23
because we do travel so far away that
22:25
you know we can go to one place and stay
22:29
there and still be able to see
22:31
everyone's really up I don't having to
22:33
go visit and have to go to a lot of
22:34
different places we're really excited to
22:37
have this building and to have the
22:39
community come and see how unique of a
22:41
place it is for children when children
22:43
receive care they're not like little
22:46
adults the environment is very important
22:49
to how they feel comfortable how we can
22:52
relieve some anxiety so whatever we can
22:54
build into that situation we've tried to
22:57
do so there's special unique places to
22:59
play and the colors are very childlike
23:02
it looks homey in many respects we
23:06
provide a safe environment for them a
23:09
friendly comfortable environment that
23:12
makes the difference it will start with
23:14
our teachers out in the lobby areas our
23:18
greeters we have to all be involved in
23:22
making the best experience for children
23:25
we want children to come here because it
23:28
is the best place to come it's going to
23:30
be a lot of room in the building for
23:31
research clinical research to take place
23:33
which we hope will directly improve the
23:35
care of children with various heart
23:37
diseases medical care for children has
23:39
improved tremendously over the years
23:41
all thanks to research the battle
23:44
building brings together researchers and
23:45
clinicians who work side-by-side to pave
23:48
the way for healthier future for our
23:50
youngest patients our mission is is not
23:54
only providing the very best care but
23:57
also finding new ways of treating the
24:00
ravages of disease and so the fact that
24:03
they're a part of this academic Medical
24:05
Center allows us to push the frontiers
24:08
of disease further and further back all
24:11
the time by participating in clinical
24:13
trials and other forms of research one
24:16
of the roles may be the most important
24:19
role of an academic health center in our
24:21
society is to is to innovate is to be
24:25
the leading edge of health care and
24:27
spins everything from providing advances
24:31
in the quality of care to providing
24:33
advances in service health care delivery
24:37
and also advancing the science of care
24:40
and now as we move the Kluge site we
24:44
will be joining the rest of our
24:46
department in the battle building and we
24:48
will be the UVA child development and
24:51
rehabilitation center I think that name
24:54
reflects what we do that we're taking
24:56
care of kids who have developmental
24:58
problems the child development part and
25:01
continuing the rehabilitation part we
25:05
dropped the research institute not
25:07
because we're gonna do less research but
25:09
because the the overall hole we are
25:11
developing a child research center that
25:16
will embrace all of that research need
25:18
I'm the director of the children's
25:22
health research center which is a center
25:27
has basic scientist as well as clinician
25:31
scientists to the best possible
25:34
discoveries and science for the benefit
25:36
of children obviously research is the
25:39
motto that lead us to improving medical
25:43
care so without discoveries the reason
25:47
of such a thing as translating something
25:50
into clinical practice children are our
25:53
future if we invest in them we really
25:57
are investing in the future leaders of
26:00
our society and the whole society will
26:03
be much better for that when that
26:07
Hospital is the one that is saving the
26:09
life of your child there's nothing more
26:12
important you could have asked me a
26:15
hundred reasons why sharps was a great
26:17
place to live before his diagnosis and
26:20
while I was thankful the hospital was
26:22
here I never would have mentioned it
26:24
now if you ask me it would be one of the
26:26
top if not the top thing I would list
26:29
because all the other stuff means
26:33
nothing without your health and so to be
26:38
able to have a facility here like UVA
26:40
Children's Hospital that can keep our
26:43
kids healthy allows you to enjoy every
26:46
other aspect of life to find out how you
26:53
can be a part of UVA Children's Hospital
26:55
visit this website
26:59
thanks to UVA Children's Hospital we are
27:02
living healthier ever after healthier
27:08
ever after healthier ever after we're
27:11
living healthier ever after thanks to
27:15
UVA Children's Hospital we're living
27:17
healthier ever after healthier ever
27:21
after
27:23
giving a child they're healthier ever
27:25
after is the best gift that we could
27:27
ever get them so it's an honor to be
27:29
here and to work with the children in
27:31
the community here at UVA Children's
27:34
Hospital we are committed to having
27:36
every child have their healthier ever
27:38
after healthier and healthier ever after
27:41
as we dedicate this wonderful facility
27:46
I think we all ought to keep in mind
27:48
that it it's really committed to the
27:52
concept of healthy or ever after for our
27:55
children for their families and for the
27:58
community