Episode 3

-Where to guys?

-To the NIC.

-How are you ladies?

Good?

-Fine!

How are you?

-What's the fastest way?

-The stairs.

Post update 17 from 58%, pancreatectomy in G-tube.

The babies born usually in the Special Delivery Unit go to the NICU.

Hello!

How are you?

So some of the babies you see in NICU rounds are fetal surgery patients.

Can I see his belly?

Sure can.

We have met those babies before birth, first introduction; second introduction after birth.

How are you guys?

Born twice basically.

♪[Music]♪ This program was made possible in part I am living in the Ronald McDonald House.

Just waiting to see what the surgeon wants to do.

It's really hard.

If this is the route you still want to take, having a fetal surgery is on the table.

But she knows that tomorrow the battle starts.

I just have to stay strong for my baby.

Alright sweetheart!

Okay, start it.

Once we open the uterus we see the baby's back.

It's been two weeks since I had the fetal surgery, I feel very kind of raw and broken.

Just don't kick your way out of there too soon, baby.

♪[Music]♪ -She is doing good!

-Yeah.

How does she look to you?

Good!

It's a big difference, isn't it?

Yeah.

She keeps changing everyday.

Yeah, she really is.

Wow!

Look, it's amazing!

Is she keeping it in?

Oh wow, look at that!

She really sucks on that binky.

While Lilly was in the womb the tumor was weighing down on her chin.

So now that the tumor has been removed, her chin has dropped and it's still very open.

She can't... she can't close it.

The tumor caused a very wide mouth, both of the soft tissues and a deformity of her jaws and also a cleft of the palate.

So we want to restore normal function of her mouth so she can eat properly, and we want to repair her palate so that she can have normal speech.

I am just going to stretch the rubber band.

When babies are very little we take advantage of sort of the plasticity of their tissues; meaning you can mold them easier when they're a younger age.

This here.

I think it works either way.

We made the garment that went across her head, strapped under her chin to help push the chin up.

You want to hold this?

Okay.

You know, Lesly has always rolled with whatever she is told.

She just loves this baby and she... she does whatever is asked of her.

She never ever looks back.

She just keeps moving forward.

It's... it's really remarkable in somebody so young, I think.

It's exhausting.

It's stressful.

Like stress can consume somebody, definitely.

It's better we're not moving.

The big thing we knew going into this whole fetal surgery thing is that they haven't figured out the predictors of what's going to happen to who, who is going to go when, they have no idea.

Here we go again, huh?

We came in for our appointment and expected it to be just a quick, everything is great, like it had been in past.

Is the baby behaving for you, staying nice and active?

Yes.

Yeah.

Hold still little one.

We could tell that it didn't look like it had in the past, and I said, what is that?

And she said I am not quite sure.

Right there, see, how it comes, it's not attached to the wall of the uterus there.

You could see the membrane separation there.

I shall be right back.

And then Julie came in and rescanned and said, yeah, that's very significant membrane separation.

And I am watching Julie take the scanner and just basically trace around her whole belly almost, and I thought this is... this is not good.

She said it was very significant separation.

She said you need to stay.

I'm not comfortable with you not being here in case something happens quickly.

Yeah.

And one of the things that can happen with... with membrane separation at this extensive, with the big membrane sort of wavering all throughout the amniotic cavity is that it could wrap around the umbilical cord.

And so one of the things that we worry about is that if this wraps around the umbilical cord, this could ultimately result in a fetal demise.

We made the decision that it was probably the most prudent thing to just admit her, watching her very closely for any evidence of ruptured membranes or labor, and if we get to that point she is 10 feet away from an operating room and delivery as opposed to if this happens outside and it takes her time to get to the hospital.

They wheeled me over here and dropped me off in the room.

We're... we're not leaving the hospital so.

Yeah, so it definitely caught us by surprise.

I'm homeless, for now.

So we are no longer in the Ronald McDonald House.

We've packed everything up and we're staying here at Children's Hospital.

The car is packed up and suitcases are packed up, we're here.

So this chop is my home for now.

It's been three-and-a-half months since we had fetal surgery.

We left our home outside of Boston and haven't been back since, and we've moved from one hotel to the hospital for the surgery, back to a hotel, then we moved into the Ronald McDonald House, and now we've moved in here.

Thank goodness my mother-in-law is taking Chael.

Thank God!

This goes in the clothes pile.

Oh no!

Good work!

The things that we don't need for a little while are in the back.

You're a kicking time bomb.

I've got to do this stuff.

Alright!

Alright!

What do you want to watch?

We finished Breaking Bad; we're going to find a new show.

House of Cards I heard is what we need to watch.

Yeah.

We should just almost be relaxing and enjoying this time.

Nobody in life gets to be told you can't do anything but sit in bed, and essentially you could watch TV all day long.

We have unlimited time together; that's what I like always want in normal life.

I am going to put in a monitor.

But it's hard because we're anticipating everything that's going to happen and it could happen at any moment.

For one hour.

Okay.

Okay.

Thank you.

Yeah, she brought one in at 1:30, or whenever that was.

It can literally be two minutes, two hours, two days.

I know, you're freaking me out.

You're making me nervous.

It could literally be that, literally.

I am on puzzle number 26 I think.

My friend bet me to see if I can do 30.

Let's see.

I can't take a shower without you guys showing up.

I'd admit it I am very surprised she is still pregnant.

I thought for sure that she would kind of progress down the slippery slope from membrane separation, to ruptured membranes and... and labor, but she is... she is tough and so is that baby.

So she is... she is still pregnant.

You can't find a pair of socks?

That's one.

No, that's one.

It's the little things.

There we go.

There's the little smile, do you see that?

Yeah.

How cute!

You're rounding the curve, light is at the end of the tunnel I hope.

I feel like we've thought so much about the surgery and all the complications, but I almost sort of forgot about like, oh yeah, we're getting a baby at the end of this.

♪[Music]♪ Okay.

Okay.

Yeah, it's okay.

Right now the baby has a tracheostomy.

She has a little bit of swelling.

She is not considered safe to have that out.

Look at her, she just doesn't want me to touch her whatsoever.

You know, the biggest thing you worry about with the baby going home with the trach is that there could be a trach accident; trach gets dislodged; trach goes in a false track, some, you know, catastrophic event that makes it so that the trach isn't in the right place.

Because it could be the difference between life and death and so the parent has to be able to do it, and they have to be able to do it flawlessly.

This is for her trach here.

We have to put this around her stoma, which is a little hole down here and then... just so that it can protect her from the plastic in her skin.

It's really, really scary.

It's scary to think that you're going to be the one that does all these things that these nurses who have had years of training do.

And also, you know you're taking your baby home, so you want to do your best, so it's a little nerve-wracking.

Oh guys, I don't even know.

She is amazing!

She is a miracle, miracle!

She won't even believe it one day, right?

She would be like, mom, that's not me.

Yes, it is.

We have proof.

Yes, excited to go home and sit on her Bumbo.

Yeah, you are.

But at home she is going to do even better.

Hi!

-How are you?

-I am good.

-How are you?

-Good!

I am excited!

Thank you!

So did you stay all night last night?

Yeah, I've been staying here for the last three days so yeah.

-Are you ready?

-Yes.

Excited!

I am tired.

I barely sleep.

Lilly, she looks fabulous.

Does she know it's a big day today?

I don't think so.

Yeah.

I think you're through the worst part.

Yes.

It only can get better.

Well, it has, right?

Yeah.

But it's taken a while.

Yeah.

Alright!

Well, I needed to say good bye.

Good bye little miss!

We'll be back.

Thank you so much for everything!

Yes, I have all the numbers.

I am sure you do.

I am ready.

You know how to get what you need?

I am really happy.

Say, bye!

The space is changing all the time, and it's...

I think it's one of the neatest things that you can ever see that these babies can be so disfigured and with time change so much.

[speaking Spanish] Okay.

Okay.

Lilly has been here for four months and today is the day that I am taking her home.

-Good luck with everything!

-Yeah, thank you for everything!

Well, me, overall, I've been here six months, so I am definitely ready to go home.

Thank you!

Thank you so much!

All ready!

♪[Music]♪ ♪[Music]♪ We were nervous.

beyond imagination.

I couldn't even eat in the morning.

There was a big snowstorm coming to Philly, so it makes us a little bit late and we get there shaken up.

Now, this is your schedule for today, sweetheart, okay?

So the ultrasound is scheduled for 7 so I am going to get ready to take right now.

We tried very hard for children the first time.

We actually had two miscarriages in the beginning before we had Allie.

To have Allie was a blessing.

Of course every family wants a boy and a girl and a dog, and a picket fence, it's the the American dream, so to find out that I had the American dream and it could be just taken away so quickly, so brutally.

You meet the genetic counselor about 11:30; you have your OB counseling with OB specialist around 12 o'clock, okay?

And then you're going to have another procedure just here around 1:30.

So this is for you sweetheart, okay?

Thank you!

The things you do for babies.

Geneva Yourse is a patient who is coming today because her physicians worry that she may be developing a fetal lower urinary tract obstruction or LUTO.

That means the urine can no longer get out.

So we went for our first trimester screen, and that screen is where they check for the... any irregularities with the heart and with any... the organs.

♪[Music]♪ At that scan we found the enlarged bladder; it was over double the size it was supposed to be, the kidneys were very enlarged, very bright, and the doctor was very alarmed.

The diagnosis was fatal, if there was no intervention.

They look much bigger.

They do look, bigger, they're larger than they were.

Than they were?

And over time the kidneys will be destroyed and so the amniotic fluid, which is basically made by the kidneys, disappears and the baby basically is just compressed, there is no fluid, and so it's just like one huge bear hug for the rest of the pregnancy.

The arms and legs can't move and so they don't develop normally, and the face is compressed against the wall of the uterus and so the face develops kind of flattening deformities.

That baby is constantly under pressure of being bear hugged.

The lungs never develop.

Then the radiologist comes in and takes a look as well, looks at the kidneys, hoping that she would say, oh, the kidneys look fine or something like that, you know?

Now we're going to turn you to the... left.

And she wanted more scans, and I am thinking, is this normal?

We have been in here for two hours.

Well, what would we do if we had an elderly gentleman who had a bladder obstruction, we would put a catheter in and allow that bladder to drain.

And so the pediatric surgeons thought, well, if we can do that afterbirth, why can't we do that before birth?

So they developed a shunt, and the idea is to take a needle and insert it under ultrasound guidance through the mom's abdomen, through the wall of the uterus, making sure that where the tip of that needle comes out is the location that we want to put the shunt in.

So how big are these babies when they have shunt procedures?

Well, the bodies may be somewhere about this long.

The hands may be perhaps the size of a half dollar.

You know, it makes for a small target and a small patient.

We had to decide whether we wanted to do medical intervention or possibly terminate the pregnancy.

It would just be cruel and unusual to put a newborn child on dialysis, breathing machines.

We thought about the quality of life and we saw, maybe if both kidneys have failed or something like that, then maybe that would be the signal or a sign to say, okay, maybe we should let this one go.

But, you know, my wife was telling me like she could still... she could feel him, you know, he was still moving in there, he was still, you know, still our child and we didn't want to... we didn't want to end a life.

What's unique about this case is...

So when Dr. Coleman and I sat down to review the ultrasound images what we saw was certainly not what we expected.

We will do whatever we have to do for you, little man; whatever mommy and daddy have to do.

♪[Music]♪ ♪[Music]♪ -Hello!

-Hi!

How are you?

Hi!

Mark Johnson.

So I am one of the high-risk OB and Genetics docs and I looked at the ultrasound in detail, I think, you know, we're all in agreement that it looks like there is some type of bladder outlet obstruction.

When there is an obstruction in the urethra, the urine can't get out.

While he is making these drawings and drawing the bladder and explaining everything, all we're thinking about is, tell me it's okay, tell me it's okay, tell me it's okay, is there a problem?

And what it's felt to be is a smooth muscle deficiency of the ureters.

Finally, Dr. Johnson moves on to a portion that we have not heard.

So what we're seeing in your case is a little bit different and what we're seeing now is that the amniotic fluid has gone back to being normal.

Okay?

So how is that possible?

He threw a wild card in there to explain what the current scenario is.

You know that early in bladder development there is a structure that comes off the top of the bladder; it's called the urachus.

Sometimes it can open back up.

This little urachus has allowed the urine to get out into the amniotic cavity, okay?

As long as that urachus stays open, the bladder should hopefully drain and hopefully prevent additional damage to the kidneys.

At this point in time you have normal amniotic fluid, but if this urachus closes, which it may well do, then we would be in a position to say, do you want us to consider fetal therapy by placing a shunt?

Thanks!

Yeah.

Wow!

So we just hope that that stays open.

Looks promising, from what I saw.

I think you are in a wait and see mode now.

Okay.

Okay?

Alright!

Very good!

Very good!

Yay!

No,no, I think you are probably happiest because you didn't have to get pricked today.

Oh, I am.

Yes, no large needles today.

I am praising and thanking God for this natural solution.

Oh my gosh!

Now we are like, yes!

Let's get back to planning.

We've got a child, let's give ready.

Oh, we're not in North Carolina anymore, that's for certain.

-Oh my God!

-We're going there.

Here we go, right here.

At the end of the consultation, Geneva and Reggie were very relieved with the findings, but quite frankly, the story has not had an end.

We're in Chapter 2 and we don't know what the rest of the book is going to turn out to be.

You know, when I see these patients I like to think of them as a mystery and we don't know where the plot is going to go.

Did you sleep pretty good last night or... Yeah, I have been melatonining it up just to get a good sleep every night not knowing when D-day would come.

Yeah.

And I am glad because D-day is here and I feel rested.

Good!

How are you doing, Shelly?

Good!

As soon as daddy-o gets here, we'll have a birthday party.

Now that we're ready, thanks for getting everything set up here, folks.

Okay.

I am totally numb.

You are numbalicious.

Deep breath!

Phew!

Keep breathing?

Trip down, I don't know where.

We are good!

Slow, slow.

Hello!

Look at your sweet little face.

We've been a long time waiting to see you.

Hi!

There she is baby.

The back looks great!

Hi beautiful!

Hey baby!

You are a cutie!

Are you okay?

Yeah.

So this is Luelle.

Hello!

Luelle, I love it.

The babies who have undergone fetal myelomeningocele repair are born, there is no immediate gratification saying this kid is going to walk, this kid is not going to walk.

We have to wait for motor function until the babies are ready to walk or beyond.

Do you know that voice?

Aah!

It's also important to impress on the mother and the parents that fetal myelomeningocele repair is not... not a cure; we just hope to help attain neurological function.

We hope to prevent the need for a shunt tube.

We hope to reverse the hindbrain herniation, which if it's not reversed can cause cranial nerve problems; the baby can have problems with breathing and swallowing that can be life-threatening.

So the hope is to help, the hope is to help dramatically, but the operation is not a cure.

So you can see sutures?

At the back, huh?

Yeah, it's kind of trying to clean her up before mommy comes.

[Baby Crying] Oh honey, it's okay, it's okay.

Your protocol as we have it, we will go from there.

-Okay, great!

-Thank you!

What we're seeing in Shelly's baby is full range of motion, flexion and extension at the hips, at the knees, at the ankles, and we see little toes wiggling.

So all that looks very good.

It's the exact same thing you would see in a normal newborn.

Luelle!

You can be cautiously optimistic, cautiously optimistic, time will tell.

She is starting to wake up.

Hey baby girl.

My perspective of her coming home was I thought it was going to be really, really, really hard.

I never thought it was going to be easy, ever.

But now that we're home it's like, you know, I can do this.

Lilly is not hard to take care of.

She is just like a normal baby.

She is like normal.

It's so different than being in the hospital.

I like doing it myself.

I rather do it than the nurse do it, everything; I put in the trach, I do the trach change, I do everything.

She is a little diva.

Yes, you are.

Yes, you are.

Lilly's dad has not been here.

I am not embarrassed.

It's just, you know, like, I don't know, it's hard.

But it is not embarrassing.

I am not the only woman in the world, you know, so it's not embarrassing, because I am doing what I need to do for my daughter.

I am very grateful to be able to live with my parents.

They're very... they're not like complicated, you know?

We've always lived together so.

She has so much attention from them.

Thank you for calling surgery.

To receive your arrival time; arrival times are available... Having a plastic surgery will be the next step for her lip to be closed.

Flores F-L-O-R-E-S, Lilly, L-I-L-L-Y.

-So are you the mom?

-Yes.

Just nervous to see how she is going to look.

Like everyday I try to kind of pinch her lips to see what I am going to see, but you know, I just don't know.

I actually am scared of her having the surgery and I guess looking normal.

I think you've been here before for her last surgery.

I am scared of the unknown.

You know, it's just makes me a little nervous.

When I look at her I just see like a normal, normal baby.

I don't see that difference.

I see her beautiful now so... Let's put your little gown on honey.

Some parents think more ahead to the future and where their kid is going to be, in school, in society, how other people are going to look at them.

Others see them in a way that they're beautiful the way they are and don't even see these differences that we might call anomalies or deformities, and they love them to death.

And then, you know, they bond with them.

So then you come down the road to surgery, to repair it, and we've had, you know, some families where they want their child back the way they were, not with the repaired lip.

So it is an interesting phenomena.

How are you guys doing?

Good!

Things are going all right?

Hi sweetie!

So we talked to Dr. Jackson and we've got a plan, we're going to take a look together at the anatomy that's on the inside.

Okay.

And then from my perspective, you know, with regards to the trach, we need to see how things are right below the vocal cords in that area called the subglottis.

And the last time I saw it was very inflamed and so today I would like to see is that inflammation going down or is it progressing, but, that but that will give us a better idea overall about what to do with the trach and that's where I think.

It's exciting, I think this one looks anxious...

I know, I know... wants to know like what is going on.

Hi sweetie!

I am hoping that that they would see less scar tissue and less swelling and that would mean she will have the trach out pretty soon.

Here we go.

I will see you guys later, okay?

Okay, and thank you!

When you first start talking about trachs with parents, one of the first questions they ask you is, is this a permanent thing?

I think having a trach is a very life-alternating point in people's lives, you have to constantly supervise them, do to changes, do the suctioning of the trach, but if the trach gets plugged, if the trach falls out and you can't put it back in it can be something that can lead to very serious consequences.

It could be brain injury from not getting oxygen to the brain or can unfortunately even be death, and so your heart goes out, to them.

Okay, you and Elmo can read together?

Here you go.

Okay, you are ready?

See you later, okay?

See you later, baby.

I love you.

Okay, Lilly, bye momma!

I see you later, okay?

You'll be okay.

-Bye!

Thank you.

-We'll take good care of her.

♪[Music]♪ [Deep breath] Okay.

Ms. Lilly Flores, no known allergies.

6.7 count, all right.

♪[Music]♪ ♪[Music]♪ Alright, so those are the key points here, that ends out.

What we do is use the anatomy of the normal side and measurements from that normal anatomy to figure out how to reconstruct the right side.

So basically from the midline take measurements to the corner on the normal side and then that determines where the new corner is going to be on the abnormal side.

This is the spot, one, two, three.

Oh you're here, okay.

So let's do our bronchoscopy now.

So maybe she has less swelling than she did before, that will be great.

We need her supplies.

Is the video on?

Yes.

Yeah, that's tight.

Can you take the endotracheal tube out please?

It looks like we have a bit of congenital subglottic stenosis, a bit more in, it's down there, the vocal cords.

A little worried about how narrow it is there.

I think it complicates getting that trach out at this point.

Alright, thanks, all done.

-You coming?

-Yeah.

This is the area of concern; that's the subglottis, that should be more circular.

It may not be enough for Lilly to be able to breathe through without a tracheotomy and that's what I am worried about.

It's difficult news, it is difficult news.

I knew at that point as soon as I saw that narrowing and the fact that it was there to stay that it was going to change Leslie's life, it was going to change Lilly's life in immediate few years at least.

It's very hard to give this kind of news to parents.

-Hey!

How are you doing?

-Good!

All done, okay?

Alright, so looking through these pictures, this is her airway starting at the top.

And just trying to remember that I am a parent too and you know, how... what's the best way to kind of convey the message there.

So I try to put myself in their shoes.

The area I am concerned about is this area here.

It's the area right below the vocal cords.

Now comparing to the last time I saw her airway it looks much less inflamed in this region, okay, so that's good.

The thing I'm concerned about though is if you look at this, it looks very narrow.

It's not completely closed off but there's definitely some stenosis or narrowing that's there, okay.

I think that's going to be our major hurdle really in terms of trying to take the trach out.

Okay.

I know that's a big question in your mind.

Yes, yes.

And I think that it's going to be a tough question to answer right now, but I think another little hurdle here.

Yes.

And then...

Considering everything she's been through... -You know, so we'll take... -I bet that won't be.

Exactly!

No...

I... you know, that sounds... it sounds very...

I think that she is going to be okay.

Yeah, I think she is going to do okay.

-Alright!

-Okay!

Thank you so much!

-Alright!

-Thank you!

Yeah, my pleasure!

Alright, take care!

-Bye guys!

-Thank you!

♪[Music]♪ ♪[Music]♪ Hi!

She is all done from my standpoint.

She still has her tubes left to go.

Oh my God!

What is this stuff in her eyes?

Oh that's just tape, don't look at her eyes.

She's got a wax.

Yeah, so this side is a little...

I made it a little longer, just because it's still shifted.

You know how our gums are shifted?

But I think as the tension of the closure will help... will help her model that also.

So everything went well, we repaired the muscle, took out some of the extra skin that was there.

Oh, you took some skin out?

-That, inside... -Inside?

So we had to close it, there was extra.

So that just comes out.

-Yeah, because I can see that.

-Yeah.

Wow!

I didn't know you guys are going to do that.

Yeah.

I'm so grateful, thank you!

Alright, I'll check with you later.

-Thank you!

-You are welcome!

Oh wow!

How exciting it has been.

[speaking Spanish] It looks good.

Alright.

[speaking Spanish] That's okay mom, no crying, no.

Thank you, God!

It's okay, mom.

[speaking Spanish] Yeah, no crying.

Ah, she is moving there.

Hi momma!

[speaking Spanish] I love you honey!

She will still be a little bit kind of groggy for probably at least another hour or so.

Okay, okay and what kind of pain medicine is she receiving?

She is going to order for oxycodone.

And I am going to give her a dose of that.

Yeah, she is very active now so of course, you know... She is getting some morphine, babe.

She is mad, you are mad!

Let me give her some morphine, it will help with the pain.

It help her calm down a little bit.

Yeah.

It almost seems like she just wants to have free range of motion and like...

Okay, well, okay, I know babe.

This has to go in over a few minutes.

Oh yeah, yeah, yeah, babe.

-And she's finally... -Yeah, I think.

The morphine had made her feel a little bit better.

All the way, till you feel that touch, there you go and then hold that wait for that stack to turn.

Is this workout a workout for wusses?

Surgeons have to be fit.

That's it, good!

One more.

It's a physical sort of thing.

Good job!

You are supposed to do this once a week.

Yeah, if you do it more frequently than once a week, body parts may start to fall off.

I need to set a fast pace.

Yeah, all right, Peter, you lead the way.

-Starting at 6 a.m. -Yeah.

Till we are finished.

I love it.

And you have to be fit.

-Yes sir.

-Perfect!

I am intrinsically a hard wired to be driven.

Tuck has a yearly fund-raising poker tournament in Manhattan and so you have all these guys, where Poker is their sport, so they make a donation to CHOP then they can play and they are only playing for bragging rights so I played, and I thought I would just lose all my chips right-away and you are going around the table basically where you work all the sides, whether you work at J.P. Morgan and all this financial wizards so I thought I was just going to play aggressively.

So I started to win, I won like ten hands in a row, wiped the entire table out and it was sort of fun, and I'm never playing again because I want to retire on the top just like Sandy Koufax right there, so on the top, I will never want to play again because it will never get better than that.

This little story is telling me about how competitive you are.

Very competitive!

Are you kidding me?

Are you kidding me?

Of course.

This is a workout that will kill ten ordinary men.

Ordinary men?

It would kill seals.

Are you kidding me?

Green berets can't handle this stuff.

See you later!

♪[Music]♪ It was strange to come home because everything looked the same but we felt so different.

Just say help please, if you need help.

Physically we have moved back in, but mentally we still feel attached to all that what happened in Philadelphia.

I know this is very hard.

Weakness and paralysis at the knee Complications were pretty mature.

May not be able to walk on her own.

Very high risk for preterm labor.

We feel like we've gone to war and we've come home and then the people ask you that how are you doing, and you don't even know where to begin.

She is doing better than we ever hoped.

She could have been paralyzed from the waist down and have bladder and kidney issues that was what we were expecting because her lesion was really high and so far none of those things are the case her bladder and kidney test was completely normal which the doctors... the doctor said was miraculous and she is moving and kicking her feet all the way down to her toes.

It's a shock.

It really is.

But one of the challenges of Spina Bifida is hydrocephalus which causes swelling in the ventricles where the fluid in the brain is created and stored.

It's a danger because then you can have a lot of delays mentally or developmental issues.

How late did you study last night?

11.

Today is the day where they are going to tell us if her ventricles have swollen to the point where they need to intervene, we could either be ending this week celebrating and going into Christmas or ending this week planning a brain surgery.

I hate hearing that...

I know, her little cough is so sad.

It breaks your heart.

She was supposed to have an MRI today but because she is sick, has a fever so they are going to do an ultrasound instead.

[Baby Crying] I'm looking for the size of her ventricles, when I'm in there.

And so I looked up and sure enough I mean the ventricles were both pretty swollen.

I tried to get Shelly's attention just to let her know, I don't think it's very good.

I saw some pretty big ventricles.

We knew it was a possibility.

Shelly, I am just following you.

Okay.

Remember, this is where we met her before.

-Oh yeah, psychiatry.

-Yeah.

-How are you?

-Hi!

Good!

-How are you?

-Good!

You're here to see Dr. Guerry?

Yes, uh-huh.

Dr. Guerry is the neuropsychologist and so she is assessing if Luelle is meeting the milestones that she should.

You put them in the cup.

You do it.

Show me.

Put it in.

Put it... put in it.

Can you show me?

Look, in the cup.

Lue do it.

Show me, put it in, or not.

You're still so quiet.

Can you talk to me?

It was meeting with the neuropsych doctor that I really felt like things aren't going as well as we thought.

Come get it.

Come get it.

So going into the appointment with the neurosurgeon, yeah, I wasn't too hopeful that there would be good news.

Hi!

Hi!

Hi!

You're not nervous?

I am glad.

You don't need to be nervous.

-Hey doc.

-Hello again.

Good to see you!

How has she... how has she been doing since I last saw you?

Physically she has been doing more; verbally a little bit, but not as much; -sleeping, eating well.

-Okay.

So overall she has been doing well.

So I think Dr. Guerry talked to you, the neuropsychologist, and she is a little behind verbally and it is of some concern obviously.

We want to make sure that her development is optimized.

Her ultrasound shows yet again the ventricles are just have edged up a little bit.

So that coupled with the fact that she does have this glitch in her neuropsych evaluation makes me concerned.

It's certainly not an urgent thing, she is not sick, but I am starting to wonder if we're not going to have to... have to treat her.

Now, the way I've been treating hydrocephalus and spina bifida babies is to do an endoscopic procedure, where you put a little endoscope through a little opening sort of actually in the edge of the soft spot, pass it into the ventricle and make an opening at the very base of the brain.

And that allows the fluid to vent from the ventricular system into the fluid spaces at the base of the brain and that surround the brain.

That's what I recommend that... that... that we do.

There is an excellent chance that that would be the only thing she needs.

Is there a timeframe that you're thinking?

Well, what I am hoping is that we can get the MRI in the next week or two.

I will see her again with the MRI and if her head hasn't grown at all and her MRI looks surprisingly wonderful, then we won't do anything, we'll continue to wait, but I do think that's... this is where we're heading.

Any other questions?

Just gotta get you over this cold baby.

I am glad you have no idea.

Let's get her home and get rested.

♪[Music]♪ ♪[Music]♪ I think if we're both honest with ourselves, yeah, sure, there are probably some things that we hoped would come of the fetal surgery, like no shunt; that may not be in the cards for Lue, but we still see quite a bit of improvement from the surgery.

We set out to give her the best chance we could and it was worth it.

When I think back on this past year and how extremely difficult it was, I mean, I mean it, I would do it many more times over.

Okay.

It's pretty universal, you know, a parent loves the kid no matter what happens, no matter what.

You see it everyday in those elevators, you see it everyday.

And it used to be the thing I was afraid of, and here I'm living it.

This way!

There was a very large donation made to Children's Hospital to develop a center of excellence for Friedreich's Ataxia and Grace was honored to speak at the launch.

Hello!

My name is Grace.

I am a sixth grader.

I go to The Episcopal Academy and I love to read.

Oh, and I have a progressive disease called Friedreich's Ataxia.

I think I spelled it wrong.

Yeah, it's got a k in the end.

Okay.

She prepared her statements pretty much last minute so I guess that way she was taking after me.

As it progressed I felt demanded to be recognized, a cure is coming.

I would like to close out with a poem I read about the independence I would like to have and will have.

The Queen of England.

My brother hung a picture of Queen Elizabeth on my door.

He did it to make fun of me, but I think it is true.

At times I do feel like the Queen of England.

Any time I call they come as quick as they can.

If I say get this, get that, everyone obliges.

But being the Queen of England is not as glamorous as it sounds.

I'd rather be able to do it all myself.

Thank you!

[Applause] Having your baby is really hard, you know, but the big joy you have when having a child makes you... like I can't...

I never imagined.

Okay, Lilly, hooray!

Seeing your child smile, play, you know, I didn't know that you can feel that.

Every parent wants a perfect baby, right?

What's perfect?

Perfect is your own definition.

He is here.

Our baby is here.

He made it.

I think about the ones that didn't make it.

Yeah, it's very gratifying seeing these kids, two years old, running around like a normal kid, of course that's gratifying, but at the same time you can never forget, you know, the people that didn't have as good of outcomes, sometimes it just doesn't work out.

We're driven by patient needs.

We're driven by babies who were born and we're too late to treat them.

The damage has already been done.

The baby dies or is severely disabled.

We're driven by trying to find solutions to those unsolved problems..

So you put a lot of your own petty comforts aside.

So it's a miracle and a privilege to take care of patients, particularly babies.

Babies are the future, right?

What can be more compelling than a baby?

Okay, hold it just like this.

♪[Music]♪ ♪[Music]♪ ♪[Music]♪ Twice Born is available on DVD.

To order, visit shopPBS.org or call 1-800-PLAY-PBS.

This program is also available for download on iTunes.

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