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KYLIE: Since I had had a
perfectly healthy pregnancy
with my son, I avoided the
doctor like the plague.
And so I kept asking
them if we could just
do the anatomy ultrasound at
22 weeks instead of 19 or 20,
where they would usually do it.
And because I had had a healthy
baby, they agreed with it.
So it was like 22 weeks,
2 days when I went in
for my anatomy ultrasound.
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He just kept scanning
and scanning.
And he was very quiet.
And we knew that something
was going on then.
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I was just very
caught off guard.
You know, you think
everything's fine,
just like the last time,
so it was difficult.
That night is actually
when I emailed
Lurie Children's and
said, can you help us?
We made an appointment
with Chicago Institute
for Fetal Health, and it
was a breath of fresh air.
Even though we didn't
really have any answers yet,
we knew that somebody
was going to help us.
AIMEN SHAABAN: Our goal is, when
that mother makes that contact,
that everything she
hears, everything
she encounters,
from the first time
she makes that call
throughout her care,
is focused around
her experience.
KYLIE: That first meeting
is where we really
learned like the ins
and outs of what exactly
they would be doing
and what the risks are,
what the positive
outcomes could be.
AIMEN SHAABAN: Spina bifida
affects 1 in 1,000 pregnancies.
Relatively common.
And these children are born with
a defect in their back, where
there's no bone, no skin,
and no muscle covering
the spinal cord.
The operation that we
do for spina bifida
is to actually go
in before birth,
close it and cover it, put
the spinal cord back inside,
and that has shown to
reverse and prevent
those neurologic
problems from happening.
A child that may not have been
able to walk independently
can now walk independently.
KYLIE: When I was wheeled
into the surgery room,
I want to say there
was at least 20
to 25 people there
waiting and saying hello
and that they were going
to take care of me.
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She was so little,
2 pounds, 7 ounces.
She was intubated for
about three or four weeks.
We waited 15 days to hold her.
It's crazy to wait
to hold your baby.
People don't really
understand what that's like.
And so every day, you're just
standing there staring at her,
waiting and waiting.
And it was great.
It was-- I think it's even
more special when you have
to wait that long to hold them.
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Right now, we see
physical therapy weekly.
We see occupational and speech
therapy at least monthly.
Most likely,
without surgery, she
would be paralyzed
from the waist down.
And right now, she's
working on standing.
The Chicago Institute for Fetal
Health at Lurie Children's is
a lifesaver, life changing.
It's the greatest
place on earth.
We're just happy.
We love them all so much.
And they're like our family,
whether they want to be or not.
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