Twice Born: Stories from the Special Delivery Unit - First Season

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There was a huge amount of skepticism, huge.

Because everybody says you know these guys...

these guys are a little bit crazy,

you've got to watch them, they're a little bit crazy.

Half the audience is like this, crossing like this,

and the other half of the audience is...

their jaw is down.

And then you'd sort of walk off the stage

thinking, well, maybe they're right.

Maybe we are crazy, but we weren't, we weren't.

As a surgeon, pediatric surgeon, fetal surgeon, This program was made possible in part

I have to deal with uncertainty a lot.

We don't know all the answers

and we have to share some of that uncertainty

with the patients.

We work very, very hard to be as honest as possible.

We work very, very hard to explain in detail

what needs to happen and what we're up against.

But I could never get past that desire

to beat nature at its own game

and to try to make things better for kids

that otherwise were facing kind of crummy futures.

I didn't ignore the fact that the baby had a tumor

but I ignored the fact that terminating my pregnancy

and that my baby was going to die

was my only two choices.

I bought my ticket home,

you know, left everything, my apartment,

everything that I owned in California was...

flew out the window and came home to New Jersey.

The day we found out we're having a girl,

we found out we're having a girl was not okay right now

and so it was a really halting moment

to get this news about this baby and feel like,

what, like this is not part of our plan.

Like this can't be my baby you're talking about.

So I looked at this situation

from as macro as I could get in the moment

and thought, this is...

this is way bigger than us, this is way bigger than us.

This is terrifying.

This has got major implications for our future

and it's got major implications for our son, 14-month-old.

You know, this is too much.

So about two days after we got the diagnosis

we had made the plan to come down here.

We had our 18-week ultrasound

and so we had told all of our friends and family

we're going to find out if it's a boy or a girl

and had asked the tech,

can you write down on a piece of paper

and put it in an envelope if it's a girl or boy

so we can go out to breakfast after and kind of celebrate.

So after the ultrasound she said,

will you just wait out in the office?

So we're out there waiting

and just kind of excited, about to find out,

and she calls us back,

and started to get this feeling like,

why isn't she just handing the envelope so we can leave.

And she said, the doctor is on the phone to talk to you.

And right away I just got this like

sick feeling in my stomach like,

oh my goodness! Oh my goodness!

It was surreal to be for the first time in the position

that you think about when you hear someone say

I've got bad news about my baby,

and in the moment you feel like

you've disconnected from your... from your body.

We were excited to feel like

we've gotten this terrible diagnosis,

but if there's something we can do to make it better

that was... just gave us some hope.

Shelly Ross is from Massachusetts, North of Boston.

She is 19 weeks gestation,

which is about halfway through the pregnancy.

She had an ultrasound

and a diagnosis of the most severe form of spina bifida

called myelomeningocele was made.

And that was possibly a fetal surgery candidate.

Would you call Sarah and make sure she's ready;

I am just going to walk them in?

Today is a long day so kind of pace yourself.

Make sure you drink.

Make sure you eat something.

You know, I'll kind of pop in and out,

but you have kind of meetings pretty much for the day.

Tomorrow is just a half day,

but you have kind of meetings pretty much.

Okay.

Mothers come to us with high hopes fetal surgery is a cure,

they can help my baby.

They can save his or her life.

I'll do anything to help my baby.

I'll give my right arm to help my baby.

And it's important to mitigate

unrealistic hopes and expectations.

That's one of the benefits of a two-day drawn-out evaluation.

Exhausting!

Shelly? Shelly Ross?- Uh-huh.

Shelly, did they put a band?- Yes.

Can I take a peek at that please?

And you're 26 years old?- Uh-huh.

I just want to make sure we're on the same page.

You know we're doing an MRI of the fetus.

And how many weeks are you?-19 weeks.

Okay.

One of things the baby will not like

is the noise from the scanner.

It doesn't harm the baby,

but if the baby is rest... is resting,

that noise is going to wake the baby up,

but again, the baby is perfectly safe, okay?

Sure! Sure!

So let's put this on.

I like to call it like a bathrobe.

Perfect.

Yes. Okay, and this way you're not open in the back.

My shoes don't have metal,

but should I leave them or should I remove them?

No, I am okay with your shoes.

No, I am okay with your shoes.

Okay.- Have fun!

Have fun!

Hello!- Hi!

This is Shelly. She is going to have a fetal MRI.

I'm just going to help Sue set you up and everything.

Okay.

During the evaluation she will have an ultrafast fetal MRI,

an MRI on the fetus,

in which she is in on the MRI machine for 45 minutes.

This gives us very important information,

particularly about the fetal brain.

She is all set.

Shelly, can you hear me?- Yeah.

How are you doing in there?- I am good.

Okay. I just need you to relax for a moment.

I just need to put some...

So I am currently in my second year

getting my Master's in Divinity.

At this point school, work, making money,

those things that are a priority for normal life situations

have unfortunately become less priority.

Right now this is the emergency priorities.

Shelly, can you hear me?

Are you doing okay?- Uh-huh, I am doing good.

Great! Okay.

At this point we'll see what I can get.

The baby is moving around

so now I just have to see what I can get.

We have to make certain that they're candidates

and candidates for the operation,

and we also have to make sure

that the baby is a candidate for the operation.

That was long.- Yeah.

Let's get you something to eat.- Yeah.

How long was that?

About an hour.

Yeah.

Yeah, whatever the next step is

we'll have to get her something to eat.

Okay. It's important.

Yeah. I'm okay right now.

I am going to have like an orange in there.

Let me remind you, you're pregnant,

you're going to get something to eat.

Yeah, I assume I can get changed.

It's easy to start to feel very isolated

and like we're in this place

that most people don't understand

and that we have to navigate.

It's hard.

We're not sure what the reason is.

We're not sure why it happens,

but it happens very early in gestation,

so when the baby is just forming.

For some reason the baby's back doesn't...

doesn't close all the way.

So it's so... there's a leak in the baby's back.

There's an opening in the baby's back, right?

So the concept behind the fetal surgery

is that if we can close that opening,

close the hole in the back before the baby is born,

then we can prevent further damage of the nerves.

Two of you protect the spinal cord with fetal surgery

on average, so we're going to have fetal surgery

compared to those who have an operation after birth.

It would be better in terms of motor function with her legs,

and that includes a greater chance

by age two-and-a-half that she'll be able to walk.

But then on the other hand, when I counsel patients

it's important to know we're talking statistics.

If your child can walk, that's a 100%,

and if your child can't walk, that's 0%.

Having surgery on your baby while you are pregnant

is a very, very big deal.

One of the big risks of fetal surgery is premature birth.

If you have a baby born at 24 weeks, 23 weeks,