>> When a mom decides to have an operation
on her unborn baby, nothing could be more
vulnerable to a person than at that moment.
I remember the first time I did an operation
before the baby was born, and I left the room
and I immediately said to no one, but I said
it out loud, we should not be able to do that.
And then when that baby was born, I felt pride.
I know I shouldn't, but it feels really good
to have a positive impact on the baby.
Dr. Adzick always says, when you 
save a baby, you save a lifetime.
>> In the operating room at the time of the
fetal spina bifida closure, it is a very well-choreographed
dance that happens.
There are pediatric surgeons; there's a neurosurgeon;
there's maternal fetal medicine specialist;
there is a pediatric cardiologist; there's
anesthesia, anesthesia techs, OR nurses, OR
techs, circulating nurses; 
it's a very large team.
Spina bifida is a birth defect in which the
spine and the vertebrae do not form correctly
very early in the pregnancy.
>> As an early embryo, four to six weeks,
this tube's suppose to form and close, all the
tissue to protect the spinal cord.
And in spina bifida, for reasons we don't really
completely understand, that closure doesn't occur.
occur.
>> Your spinal cord acts as your information
superhighway between your brain and your extremities,
and it allows your brain to tell your arms
and your legs what to do and to maintain control
over your bladder and your bowel functions.
>> Because the spinal cord is outside the
body and it's exposed to the environment,
over time there's irreversible 
damage to the spinal cord.
>> When couples are faced with a diagnosis
of spina bifida in their baby, the two main
treatment options are: fetal surgery while
the baby is still in mother's womb or surgery
on the baby right after birth.
What's really important to understand is that
the fetus surgery is not a cure.
The goal for the fetal surgery is that maybe
we can minimize or reduce some of the long-term
effects of spina bifida.
For kids who have spina bifida, the long-term
issues that we worry about are things like
difficulty controlling their bladder 
and controlling their bowel.
We worry about them not being able to walk
on their own; they may need to use a wheelchair.
Kids are also at risk for developing hydrocephalus,
or water on the brain is what some people
call it, and so they may need to have a shunt
placed in order to keep the pressure down
in their head.
Hopefully we'll improve the likelihood that
the baby can walk longer term.
Hindbrain herniation is another one of those
big scary terms that we hope we can reverse
with the prenatal surgery.
Hindbrain herniation is a common finding for
babies who have spina bifida, where the posterior
part of the brain starts to come down into
the top of the spinal canal.
>> The first hospital that we were at offered
to do fetal surgery for us. And we asked them
how many times they have done it, and they
said we would be the first, and that just
for us, was not an option.
We just felt that our daughter, we wanted
her to have the absolute best care possible
even though she hadn't been born yet, but
we just knew we had to come here, just there
was no other option for us.
>> Our team at CHOP, we're very fortunate
to have done a lot of the groundwork
experimentally for spina bifida, to have done
some of the first cases.
And because of our expertise, there's no other
center in the galaxy that's done more fetal
surgery for spina bifida than we have at CHOP.
>> There are layers and layers and layers
of expertise that we drop on, on a daily basis.
It really is a giant team specialized with
various backgrounds and education with a singular
purpose — best outcome for mom and baby.
>> The doctors during the consultation let
us know what surgery entailed.
They let us know they would be doing an incision
across my belly as if it were a c-section,
and then they would be opening up my uterus
and they were going to use an ultrasound to
find her, to make sure just her back came
up out into the world.
It's just mind blowing that it's possible.
It's just mind blowing.
>> All this team has to work sort of seamlessly;
have to work at some level without communicating
with each other, know what each member's doing.
And so it takes a lot of teamwork.
And that teamwork's built over 
years of working together.
So the first thing we close is the dura, that's
the covering to your brain and your spine.
Then we close the muscle; 
then we close the skin.
By closing those layers over the top, we're
protecting the spinal cord from any ongoing
damage.
So we're hoping that we can have an impact
on those nerves and keep as many nerves as
we can functioning so the baby has more function.
>> So, typically after having had fetal surgery,
moms remain on bed rest in the hospital for
about four days.
And then after they're discharged from the
hospital, they're discharged with a wheelchair
and they have very minimal activity 
for about the first three to four weeks.
And if everything looks good on a follow-up
exam, we slowly allow her to increase her
activity level.
After fetal surgery, moms are seen every week
for both a prenatal visit and an ultrasound.
We plan for mom to have a 
cesarean delivery at 37 weeks.
>> The Garbose Family Special Delivery Unit
opened June 8th, 2008, and it was the first
birthing unit dedicated exclusively to healthy
mothers whose unborn baby has a birth defect.
>> I think it's easier to deal with stuff
that you know than you don't know, and this
whole time has been a very unknown.
Unknown whether we were going to make it to
37 weeks, unknown what ... how he's going
to come out; how he's going to do; 
how I would do, you know.
But at least after today,
it will all be on the table.
So it'll be so much easier to deal with.
I'm excited.
I'm excited to no longer have to be 
in a wheelchair and on bed rest.
I can't wait to go walking again.
>> So if mom opts to deliver here in the Special
Delivery Unit, immediately after birth, the
baby is evaluated by the neonatal surgical
team, stabilized, and then immediately goes to
the Neonatal Intensive Care Unit and starts
down a very involved care pathway that includes:
neurosurgery, surgery, urology, and specific
imaging so that we can best assess the outcomes
from the fetal surgery and  make a
 detailed care plan going forward.
>> Some of our families are relocating from
far away, across the country, maybe from around
the world.
We surround the family with layers and layers
of support, so we support them with psychosocial
services, with nursing support, and they may
not realize the effect that the diagnosis
and the treatments and relocating to 
our center may have on the entire family.
There are issues with anxiety, there maybe
marital issues, and we address those with
our psychosocial team.
>> Miah still has daily medical care 
that she has to have done.
She has no function of her bowel or bladder.
She gets therapy four days a week, so some
days are definitely harder than other days.
She has great function right
now and can run around and play.
>> We forget she has spina bifida some days,
but you know, we still worry about her bowel
and bladder, going to school and trying to
regulate that and combat that when she's at
school.
We're blessed where she is right now.
If that's all we have to deal with, 
we got out lucky.
>> It was scary for me at first, 
but now it's just so normal for us.
Miah just doesn't know any different and I
think, I think sometimes as parents we stress
more over what their life is going to possibly
be like than how they actually perceive it.
>> So you might ask why come to the Center
for Fetal Diagnosis and Treatment at CHOP?
The reason is that as a patient, as a mother
carrying a baby with a birth defect, you want
the best information from an incredibly caring team; 
you want to know all the option, and you want
the best possible care.
That's what we provide.
>> Today, Miah is an incredible, 
happy little girl.
She is able to be a typical child.
She's able to play.
She just started gymnastics, and she's going
to be starting kindergarten in the fall, and
she's just incredible.
