In eighth grade, I was dancing a lot and I made a lot of new friends, and I was on a great team, but then a lot changed.

I had to stop dancing.

I woke up, went to Lexi's room, and I was like, "Okay, Lexi," you know, "Time to get up."

But she didn't respond at all.

Her face was just gray.

Her lips were blue.

I was checking, I-- there was no pulse.

She wasn't breathing.

Many people die from, from this disease over time.

He said, "She's got maybe a 10 percent chance of making it through this."

Someone had counted that she would receive well over a hundred shocks to her body in order to keep her heart stable.

There's no pill that you take to cure her of restrictive cardiomyopathy.

The only solution is a heart transplant.

[narrator] Lexi desperately needs a new heart, but will she receive one in time?

[dramatic music] [dramatic music] [contemplative music] Alexis is a very headstrong girl.

She, she's got a very strong personality from the standpoint that she's always been somebody who, when she decides she wants to do something, she will do whatever it takes to do it.

I think she's funny, too.

She's hilarious.

Yeah.

Very dry sense of humor, always making us laugh, even at the most serious moments-- I would describe myself as artistic and very sarcastic.

Um, but we're all like pretty silly.

Um, having two sisters is kind of crazy, 'cause, you know, since we're all girls, we fight over kinda like the same stuff.

Like, clothes is a big one.

Lexi loves to take my clothes.

[narrator] Fifteen-year-old Lexi and her family are getting ready for church.

It's a typical Sunday morning.

"Girls, are you getting ready?"

But their lives are about to change forever.

In eighth grade, I was dancing a lot, and I had made a lot of new friends, and I was on a great team, but then a lot changed.

I had to stop dancing and, yeah.

It was just not the same anymore.

[dramatic music] [Irene] What happened in the beginning-beginning.

She was fainting.

This was in junior high.

Um, she fainted just a couple of times, but one of them was really dramatic.

[Lexi] I was running the weekly mile for P.E.

I felt myself kind of getting dizzy, and so I tried to hurry to the blacktop.

She just fell face first on the blacktop.

It was just, it was a big deal.

They ended up saying, "Oh, it's just dehydration.

She's just dehydrated."

I remember just thinking instinctively, like, as a mom, "Yeah, but there are hundreds of kids running the mile every day.

They're not passing out."

[narrator] An EKG revealed something extremely unusual about Lexi's heart.

[Irene] He said that, "There's something going on with that EKG."

So he said, "I'm sending you to a colleague at Loma Linda."

And I was like, "Okay.

Oh, just let us know when.

All right, just let us know when the referral--."

He was like, "No.

Now."

And Dr. Bach is the one who diag--, who uh, diagnosed her with restrictive cardiomyopathy.

At the, the time when I was first seeing her, there were several kinda possibilities, but one of them being what's called restrictive cardiomyopathy, which is um, which is a form of heart prob--, heart muscle problem, where the heart becomes very stiff.

Many people die from, from this disease over time.

He said, "This is very serious."

He said, "She easily could have died while she was dancing."

And he said, "And she still can."

And then, you know, he turned to Lexi, and he was very blunt.

He said, "You will never dance again with this heart."

[Todd] There is no pill that you take uh to, to cure her of restrictive cardiomyopathy.

The only solution is a heart transplant.

[narrator] In just a short amount of time, Lexi has gone from being dehydrated to needing a new heart.

None of us were expecting that level of seriousness.

It was like, bam!

[Todd] When you get that sort of news, there's nothing to describe-- --the feeling that you have, because your world suddenly changes.

The average lifespan is about two years after someone's diagnosed with restrictive cardiomyopathy.

So, the, the tendency is generally to think about let's doing these, these kids for a transplant earlier than later.

I was just confused and like, surprised; wondering why and like, how this happened.

[sound of drum beating and music] When Lexi was put on the heart transplant list, she was low down on the list because she was fairly healthy, even though she had this disease.

It seemed to be progressing slowly.

That's what they thought.

[sound of drum beating] We were at church and she came to me.

It was a Friday night, two weeks before.

She said, "Mom, I'm having a little bit of-- my chest really hurt.

The doctor who saw her said, "You know, I see a change in her EKG."

And I was like, "No.

It's--uh, her EKG is crazy.

Everybody knows that.

You know, it's just."

"No."

He said, "No."

He said the one that we did tonight has a change in it.

It was Friday morning on February third.

I woke up, went to Lexi's room.

And I was like, "Okay, Lexi."

You know, "Time to get up."

But she didn't respond at all.

So I was like, "Lexi!"

So I went and shook her a little bit, shook her leg a little bit.

You know, and then I looked at her, and her face was just gray.

Her lips were blue.

And I'm like, "Lexi.

Lexi!"

I was like shaking her.

She's not responding.

And that's when I was like, "Lexi, wake up!"

[Todd] All I heard was, "Lexi's not waking up!

Lexi's not waking up!"

So I jumped out of bed and I ran to her room.

And uh, she was lying there.

She was, she was blue, you know.

Her lips were blue.

And she wasn't responding.

So I was checking.

There was no pulse.

She wasn't breathing.

And um, so I didn't--the first thing I knew to do, I, I started CPR.

I was doing compressions and I wasn't getting anything.

All, all that was going through my mind is just keep going.

Just keep going.

Going to the CPR classes when I was 17 or so, I never imagined that the first time I'd ever use it would be on my own daughter.

The paramedics arrive and take over.

But after another 17 minutes of CPR, they still can't get a pulse.

They'd be doing stuff, and they'd say, "What now?"

They were asking each other, "What?

That's not working, what now?"

[Irene] They're very schooled to be straight-faced, but I could tell things were just getting more and more serious, and they were kind of like-- I could see it on their faces that they were kind of getting ready to say, you know.

I was trying to hang on to hope, but I was grasping the reality that we had just lost our daughter.

[sound of drum beating and music] [Irene] I literally was on my knees in my room, just begging God, "Please, I never got to say good-bye to her.

She cannot go this way."

[crying] [Todd] And all of a sudden, one of the guys looked up, and they were getting something, and he looked at me and he goes--.

He gave me a thumbs up.

They got a pulse.

It was a weak pulse.

They did it-- I think they dosed her with epinephrine and they got a, a weak pulse, and then immediately they, they sprung into action.

They brought her down, got her in the ambulance, and um, got her off to, to the hospital.

[narrator] Lexi is in a state of complete heart block.

A temporary pacemaker is put in through a vein in her neck.

She is then transferred to Loma Linda University Children's Hospital.

The room that she was wheeled into, above the door had a verse.

And I believe it's Ezekiel 33:23.

And it said, "I will put a new spirit in you.

I will remove your heart of stone [together] and give you a heart of flesh."

And I remember seeing that, thinking, what?

All of the drama of the journey, and the trauma, took place in that room, with that verse above her door.

[Todd] The question in my mind the whole time is, my daughter, how long was her brain without oxygen?

'Cause if she was lying there, and she was blue, is there any of her there, or is she a vegetable?

That was kinda, I mean to put it bluntly.

So I actually asked the doctor.

I asked her, and she said, "We just don't know.

We won't know yet."

[ominous music] I was in the waiting room, talking with some people, and all of a sudden Irene ran in to the waiting room and said, "Todd, come here.

There's a problem."

And so I ran into that cardiac ICU, and there's bells going off.

She had coded in the hospital.

It was pandemonium in there, 'cause, there was hospital staff.

People were--there were maybe 20 doctors in the room, and then spilling out into the hallway, going down the hallway.

And there she is.

For the second time, I saw my daughter blue.

Her heart had stopped again, and in this case, I think it was close to 45 minutes.

Hospital CPR; they were not able to revive her.

They had to do an emergency procedure.

[male voice] At that time, the only way to keep her alive was essentially to put her on a form of mechanical heart-lung support called "ECMO."

It was the middle of the afternoon, on Tuesday, when I received the call that she was arrested and having CPR done again, and that she was probably a good candidate for ECMO.

ECMO is a pump that will oxygenate Lexi's blood outside her body, then pump it back in.

But the procedure is risky.

He said, "In this case, we gotta do it now.

It's an emergency.

We're taking whatever staff we've got, and we can't do it in the O.R.

We'd better do it in the ICU.

Uh, she's got maybe a 10 percent chance of making it through this."

Irene was crying.

She said, "I need to call my brothers.

They gotta be here."

And I still remember, he took her by the hand, and he said, "My dear.

There is no time.

We have to do this now."

[male voice] We mobilized the team and emergently put her on ECMO at the bedside.

The blood would circulate outside her body and get oxygenated, and they would pump it back to her body.

So that's what they were able to do in an emergency setting, and that kept her alive.

[narrator] Against all odds, ECMO is successful.

[Todd] The procedure worked, and she--she lived through it.

Um, so, it was the 10 percent that, that won out.

The next day, I asked him, I said, "Dr. Aguchi, did you really mean 10 percent?"

He said, "Actually, really, in your case, it was more like a 99 percent mortality rate.

You know, I was giving you a little extra so you could have something to hope for."

She really needed a heart immediately.

And what--I still remember him saying, "We really need--she needs to have a heart within a week."

We had increased her status on the list to the top of the list, so that way we could try to get her a heart as soon as possible, which is what she needed.

[Narrator] But before they can find a heart, Lexi develops complications with ECMO.

She stayed on, on that device for about two days before she developed a complication of it with her leg not receiving enough blood.

If they didn't do something, she was gonna have to have the leg amputated.

Well, as a result of this, they had to do another emergency operation because they couldn't wait a whole week.

Her leg was gonna be completely gone.

Thursday morning I said, "We have to look at our resources and change the system."

And that afternoon, we took her to the operating room, disconnected her groin from the ECMO machine and repaired the circulation to her right leg.

[narrator] The team decides to transition her to a ventricular-assist device, or LVAD, a battery-operated mechanical pump that has to be surgically implanted.

[doctor] We put in a left ventricular-assist device to support her, her left RN, took the ECMO cables out and, um, we constructed the arteries to her leg um, and we were able to salvage uh, the leg.

[narrator] But there are still more complications.

She developed allergic reaction to the heparin, which is needed to thin the blood in order to keep the device working.

So at that point, we had to switch her to a different form of anticoagulation, and she developed liver failure with that medication, so we had to switch to a third type of medication.

Ev--ah, every day was a challenge with her.

She uh, she was very much a struggle, and an uphill fight for the entire team.

Almost every day, she would have to be shocked to bring her heart back, which just was a sign that her heart was getting worse and worse and worse and worse, and she desperately needed a transplant.

Someone had counted, over the whole period she was here, that she had received well over a hundred shocks um, to her body, in order to keep her, her heart stable.

[narrator] Despite challenge after challenge after challenge, the team stays committed.

You know, when you make that much of an investment uh, into trying to get a patient through, we become so heavily invested that it, it's, after, you know, being awake for three straight nights, what's another night.

You know.

And a lot of it was her, and her family.

Um, they never once lost their faith in our team, um.

[sniff.]

sorry... [somber piano music] [male voice] We're all gonna sing 'happy birthday to you.'

Okay?

Anyone want to start us up?

♪Happy birthday to you.

Happy birthday to you.♪ ♪Happy birthday dear Lexi, happy birthday to you.♪ [clapping] Wooo!

[everyone] Happy birthday, Lexi.

[narrator] Lexi spends her 16th birthday in the hospital.

From the minute that they said she only has a week, you know, we don't if she'll last a week on the ECMO.

That was when, that was the deciding point for starting the posts.

Literally, there were thousands of people around the world that were gathering-- even a school in South Africa.

I mean, praying for her.

Some of them had 24-hour prayer teams going.

So that there wasn't a minute that she wasn't covered in prayer.

[Todd] God gave us a gift, in that they slowly backed off on the lidocaine to the point where eventually she was actually waking up, and she'd wake up and was terrified.

She was crying-- which once again, for us was a good sign.

Because, mind you, she's now been through several events.

The coding at home, she coded in the hospital.

She's gone through several incidents of not having blood to her brain.

Uh, and slowly, she got to the point where she was able to start speaking, and she started talking to us.

Which was a gift from God, 'cause we got to see that our daughter was there.

She was still there, in there.

Most of the time, I was just sitting by her bed, holding her hand, whispering into her ear.

I'm like, "You keep fighting.

You keep fighting.

You've got this."

'Cause she was unresponsive.

But, I'd see little flickers of Lexi, which one of them was an annoyed look.

And I'd start laughing.

I'm like, oh, she's, she's there.

She's there, 'cause that's her look.

That's her annoyed look.

You know?

Or her fear, when she'd start crying a little bit.

But I would just whisper into her ear, you know, I'm like, "You're gonna get through this.

Just keep fighting.

Keep fighting.

God's with you.

He's in there."

And so, emotionally, I knew that God was with her there, and that was hard again, as a parent, giving up the control and realizing -- God was like, "I've got her.

Because I supersede time, space, and all dimensions.

So I am there with her."

When we talk about Lexi, we have to uh, say a word about her parents.

Uh, and I know it takes more than just a word to describe those parents.

They were truly exceptional.

They were in the hospital throughout the time she was in a state of near coma, two-three weeks at her bedside, talking to her, encouraging her.

They were actually a source of encouragement to the staff who were caring for Lexi.

Um, I think my biggest fear was just not being able to ever talk to my sister again.

'Cause the night before, I, we weren't on like best terms.

Like, we were arguing a lot, so I think, that was my biggest fear was not being able to make up with Lexi.

I took Zoe and myself, we went to go buy some clothes so we could actually have something to wear.

Toiletries, basic necessities.

Yeah, I was having a good time with her, but as we were driving she said, "Dad," she said, "Daddy, is Lexi going to, is Lexi gonna die?"

But I didn't know, and so I had to tell my daughter, "Honey, I don't know.

But I do know that she's here now, and we need to be thankful."

[doctor] It was a Saturday.

I, I ran into her father at the bedside, and he, he looked, you know, overwhelmed, although he did not say a word.

He was always positive.

They are solid, strong people.

But I noticed he was tired and I said, "You know, why don't you go home?

Let us take care of her, and we'll keep you updated."

[Todd] It was very difficult.

When I left the hospital that night and when I went home, it was kind of, I was relinquishing it to God.

So I was up in my office, and a phone call came in, and so I answered it.

It was Dr. Bach.

And he said, "Well, um, we think we have a heart for her."

I said, "I, Is this, are you serious?"

He said, "Yeah, we're serious."

"Okay, so you don't think, you do?"

He said "No, we have a heart."

I was sitting bedside again, just praying for her, talking to her, and that's kind, what I did the whole time.

And then the phone rang, and the nurse said, "Oh, it's for you."

And I was like, oh my gosh, what?

You know, what now?

And he said, "We have a heart."

[hopeful rising chords] [narrator] That afternoon, Lexi's parents signed paperwork authorizing surgeons to go ahead with the transplant.

Lexi is extremely weak.

NO one knows if she'll survive the surgery, but the medical team is determined to give it everything they've got.

One month after Lexi's heart stopped beating, they open her up.

[hopeful music] [hopeful music] [melancholy yet hopeful cello] [melancholy yet hopeful cello] The heart that caused crisis after crisis is no longer inside Lexi's body.

Dr. Razouk and Dr. Martins implant the healthy donor heart, and it begins beating immediately.

The surgery, just like the rest of Lexi's care, is filled with complications and challenges, but after 12 hours in the operating room, the surgery is finally complete.

The transplant is a success.

[music cont.

with driving drumbeat] I think it was around 11 o'clock or so in the morning of the sixth that she was wheeled back up.

The nurse at the station, she said, "Come over here, come over here, I want to show you something."

And she said, "See that?

That's her heart."

We had been used to seeing the heart have a specific pattern, and the pattern looked completely different now.

She said, "That's the way it's supposed to look."

[music fades] Her eyes opened up and she looked around, and she, you could see this terror coming across her face, and she started crying.

When I first woke up, I was so confused, and, like, I saw my dad sitting there.

She asked the question.

I'll never forget this.

She goes, "Am I gonna have to have a transplant?"

And, she didn't realize that she already had it.

And I said, "Lexi.

No.

You've already had the transplant."

She goes, "I have a new heart?"

"Yes, you've already had a new heart."

She started crying, and she said, "I'm so happy."

I was so happy that it had already been done with, 'cause I had been worrying about it.

It was kind of crazy, the whole process, because one minute I was just living life like normal teenager, and the next I'm waking up in the hospital.

And, that was like--sorry.

That was um, kind of scary for me.

If her life was to be saved, but she wasn't altogether there, I would take that.

Gladly.

We would do anything, we would pay any price it took for that.

Uh, but then to know she's all there.

I remember walking into the room, and it was just weird to see her looking at me, conscious, and, Lexi and I aren't really sisters that show much affection to each other, but I went and I was holding her hand and then, she kind of looked at our hands and like, pulled her hand away.

So, it was kind of nice to see her personality back.

[doctor] With Lexi, that's the most amazing part, and lots of children with these types of devices will have a stroke or a bleed in the brain that can lead to significant damage.

And, and even without that, being asleep and with these toxic medications for so long can, can definitely leave someone with brain damage over time, and she is a miraculous child.

We had done three CT scans on her during the time around when she had had the device in, and never saw one bit of bleeding on them.

There was nothing else there that was bad.

And for us to see that is just, is just miraculous.

She calls to mind a patient with a similar condition, from a few years back, who also had restrictive cardiomyopathy and, that patient didn't make it.

So, it's hard for me to think of Lexi without thinking of [choking up] that patient.

Doctor educated me, I remember, she said, she pulled us aside, she said, "You need to realize that what you've seen with your daughter is a miracle."

Push them foward Good, Lexi.

[narrator] Lexi has been immobile for a month, and her muscles have atrophied severely.

She will have to learn how to sit up again, to eat again, to walk again.

Wow, Lexi.

That is awesome.

I feel like this has changed me to be more grateful for life and not take things for granted.

Like I had to learn how to walk again.

Like, even as simple as picking up a spoon and like, eating cereal.

I had to learn how to do all that again.

And, it just made me appreciate life.

Still even now, to hear her say "Mom," is like, it's a big deal.

You want to just spend all your time with that person, because um, you realize how precious that time together is.

So, and then you start driving her crazy.

Ha ha ha.

Today, Lexi is getting ready to go to college.

Her goal is to become an animator and work at Pixar.

Someone else's heart is inside me.

It's still kinda weird, thinking about that.

But uh, yeah, it's kinda cool, too.

And I'm grateful for the family allowing their son or daughter to give me such a wonderful gift.

The greatest gift ever.

[gentle piano music] [gentle piano music] This program was made possible by the Ralph and Carolyn Thompson Charitable Foundation and Ed and Ann Zinke.