>> The only thing that we have definitely on
our scheduled today is the kids get off
the bus around 3:40 and then we have Cub Scouts at 6:30 tonight.
Crazy. Tom and I were married in 2010.
Quickly, within a couple of years,
started to try to have kids.
It was my dream to become a mother.
I did and I had Hannah then I had
Ben and then we got pregnant with Emily.
I saw the same OB for all three of my kids.
Who's your teacher for swimming?
>> Mrs. Melina.
>> I went to have some blood work drawn
around 15 weeks being pregnant with Emily and my AFP was off.
At that point I went out and ultrasound at
the hospital that I worked at and they
gave me the results and they verified that
Emily had spina bifida and your brain just shuts off.
Being a nurse, I knew too much.
You just know too much.
When a baby is being formed in utero and it usually
happens before even a mother knows she's pregnant.
It's right around four weeks is that
the scan will actually form over the spine
and over the nerves and then it will
form together and that will become the baby's back.
At this point, Emily's back did not
close all the way and so she had
a little teeny opening in her back,
her nerves were actually protruding through this hole.
The longer you stay pregnant with this,
the more harm your amniotic fluid can do to her nerves.
They referred me to Johns Hopkins Fetal Therapy Center.
We went for a detailed ultrasound.
>> What I remember is that in the first consult when they came in,
they were pretty devastated.
>> We met with some of the doctors that were there
and they told me exactly where the lesion was.
They went into more detail of what it was going
to entail as far as her quality of life.
Emily's lesion was pretty low.
We were told that she would probably walk,
maybe with braces, long distances, probably a wheelchair.
There's always a possibility of a brain shunt,
that the babies would need a shunt
because of the disconnect in the hole,
opening up the whole spinal cord.
I basically had already disconnected.
Then they talked about this prenatal closure
and this fetoscopic surgery.
I was a like what? They explained it
and my demeanor turned to like,
this might be an option.
>> There is unfortunately not
enough recognition in the community what is available today.
There is a range of things that you can lose for
good in the time interval
between when the lesion is seen and you deliver.
>> Being there for families when they really are dealing with
some news that feels devastating at the time.
It's a really special place to be because not only
do you have to give them the information
medically about what's going on.
But you have to really meet them where they are with
that and not only that provide them
the full spectrum of what the options are for
their management and then help them find the right path.
>> Dr. Miller brought me the results. She showed me.
She said this and this.
The statistics are what basically made me turn and say,
well, prenatal closure has this type of statistics.
Postnatal closure has these types.
I would really like to give my baby
the best chance and that's why we went with the prenatal closure.
I left that meeting very informed.
I do feel like meeting with the Hopkins family
saved her life because I was not ready to continue with pregnancy.
We loved it. It was good.
>> It's a growing field,
but it also requires consideration of
multiple human beings at the same time.
It's a consideration of the mother,
the maternal health and maternal safety.
The safety of the fetus and
the safety of the neonate when the neonate needs to be delivered.
There's a pretty multifaceted level
of considerations that you need to bring to the table.
I just find that very rewarding.
I love that. Every child with spina bifida,
whether they get prenatal surgery or not,
get managed after delivery in the spina bifida clinic,
which in itself is a multidisciplinary effort.
You have a urologist,
orthopedic surgeons, developmental specialist, neurosurgeons,
neurologists that basically tailor
the care input for what the baby needs.
By having the Kennedy Krieger Institute and
pediatric neurosurgery available and working so closely,
patients can actually talk to
those specialists so they get prenatally information.
We are able to provide
the continuity of care from prenatal to postnatal.
>> Emily sees specialist doctors
every once in a while and she just had
her annual MRI yesterday and
she was very excited to be in her little gown.
Looking at her from the outside,
you would not be able to tell that anything is wrong with
her other than her scar on her back.
It takes a world and a village and a hospital and
everything to get through
the devastating diagnosis that something's wrong with your baby.
>> At Johns Hopkins,
you have the fastest access to
all the resources that you need to have a good outcome.
That is completely unique, actually.
>> There you.
>> She has done amazingly well.
I always told Dr. Miller and Dr. Baschat,
they follow me on Facebook and they see her pictures and
developmentally her milestones have
been on track every single milestone.
As soon as she was born,
her back was completely healed.
Her MRI looked fantastic.
She did not need a brain shunt,
then she might need our help with some stuff down in
the future and we will support her in whatever way we can.
I do truly believe Emily is the poster child for this surgery.
>> What is the biggest rewards you can hope for?
If you feel that you made a different,
that alone is worth doing what we're doing.
Seriously, the whole team,
they really look after patients as if they were their own family.
At a time where you are in a considerable level of distress,
you got to process a lot of things,
it's nice to be there for them that they can lean on us.
I think that's what I love about the work.
I think that's what the whole center team loves about the work.
That's pretty special.
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