Tim has sounded like this
- (artificial voice) Not being able to talk
I think is terrible.
- [Narrator] Tim spoke normally
until 1978 when a brutal incident
robbed him of his voice.
(engine rumbling) Riding to a
fire training seminar, he takes an old logging train.
He has no way of knowing that someone has maliciously
strung a cable across the road to stop bikers dead.
- Oh my God.
Why would you do that?
That's terrible.
That's like decapitation style.
- [Narrator] Tim barely survived the accident.
He eventually recovered from his injuries
but his larynx had been crushed by the cable
and was irreparable.
For 20 frustrating years, Tim's only option was to speak
through the electronic voice box,
until a 1998 news story led him to
Dr. Marshall Strome, a larynx specialist
at the Cleveland Clinic Foundation.
- [Dr. Mike] Larynx is the voice box.
Pharynx is the throat.
- [Narrator] For years, Dr. Strome
had been working to perfect a human larynx transplant
and Tim Heidler was a perfect candidate.
In transplant surgery,
the biggest danger is the donor organ itself.
The recipient's immune system naturally attacks it
as a foreign invader.
- A lot of times you're gonna have to take medications
in order to weaken your own body's natural response
against this organ.
- [Narrator] Doctors use drugs
to suppress the recipient's immune system.
This can cause even the smallest infection to become fatal.
- And it also creates a problem lifelong for many
of these patients where they're immunocompromised to viruses
that maybe you and I wouldn't be so concerned about.
But those people would need to take extra steps
to be careful.
And also when you're making a transplant
like this for the vocal cords
you gotta be able to think about the vascular connections
which is the blood supply, but also neurologic
connections because you gotta be able to fire
those muscles in addition to supply them with blood flow.
- [Narrator] Tim has survived the surgery.
After an anxious two and a half days,
doctors ask their patient to speak.
- [Doctor] Okay, one more breath.
Now the, "Hi mom."
- Hi mom.
- Wow.
- [Narrator] Tim Heidler using a transplanted larynx,
speaks for the first time.
- You gotta be very careful here 'cause the vibrations can
tear open the sutures as well, but you also don't
want so much scar tissue to form that you lose mobility.
- [Narrator] To allow access to his new larynx,
in case of complications, doctors decide to
keep his trachea open.
- Mmm.
- [Narrator] In order to speak,
Tim has to - Tracheostomy.
cover the hole to force air through the transplanted larynx.
- I don't sound like the donor
because we have audio tapes of him
and he was a very large man and he had a real low voice.
- Well 'cause that's differences in spacing, differences
in muscle tension, you're not gonna have the
one-to-one the same voice.
It's not literally a voice box.
- [Doctor] What makes us
sound the way we do is the shape of our mouth.
The amount of space that we have on our head to resonate,
which is why our voice boxes can be very different
in terms of dimension, sometimes.
- I actually have had this done for myself when
I was diagnosed with LPR,
Laryngopharynheal reflux.
But it's an incredibly overlooked diagnosis
for people who are having mucus in the back of their throat.
A chronic cough, maybe even a sore throat that's worse
in the mornings upon waking, even voice box changes.
But lately I've been catching it
in my patients cause I'm more aware
of it and successfully treating those symptoms.
- You can notice it run the pitch way up.
(vocalizing)
- [Doctor] He has pitch, he has inflection.
- Wow.
- [Doctor] He has a totally normal speaking voice.
- Yeah it is.
It's amazing.
- This doctor's like not taking any credit for this mirac --
"Pretty amazing."
Like dude you did this.
This is amazing.
You guys came together, you waited for the right donor.
- [Narrator] Nicky Freeman is 40 years old
but is trapped in the body of a 10 year old.
- Hmm.
- [Narrator] He's aging the equivalent of just one year
in every four.
- Aging or developing?
'Cause those are two different talking points.
Aging is almost like a Benjamin Button situation
where you're aging backwards.
But here he seems to be developing slowly based
on the image that I'm seeing here.
- [Narrator] Nicky was born blind and was close
to death for his first few months.
- I wonder if it has something to do with
an infection from the birth.
- [Narrator] At the age of 19
he was the same size as his five-year-old sister.
- Hmm.
- [Narrator] He only reached puberty as he approached 30
and as his younger siblings grew at a normal rate,
he continued to weigh just 44 pounds,
the size of an average 10 year old.
- They're judging age based on size
and that's not something we typically do.
We can give age ranges, size ranges for ages
but that's not the only sign of development or aging.
What I'm curious about are, are hormonal levels
and if there is any scans that have been conducted,
full body, mostly in the brain to see
if there's anything in the pituitary gland.
Anything related to growth hormone,
maybe even the thyroid gland
or a condition where you have like a multiple
endocrine neoplasia situation where you have multiple types
of tumors in the endocrine or hormonal system.
- [Narrator] Local doctors have no clue
as to what caused Nicky's condition
and no idea what his future holds.
And because he doesn't speak
and cannot see to read and write,
doctors have no real way to gauge his mental ability.
- I mean, I feel like we're missing something here
about genetic testing, scanning.
I know they're not aware of what's going on, but I feel
like I would at least want the next steps
taken to try and figure out what is going on.
- As a mother you think that it is your fault.
I do accuse myself causing Nicky's problem.
- Of course that's a, that's always a feeling that can come
into our minds and irrational thoughts are part
of being human and part of battling the feelings that come
with those thoughts is trying to speak back
to those thoughts and seeing how much truth is in there.
Usually this is best done through journaling.
Well you write down the thoughts that like,
I caused my son to be this way.
And then you have to write down if this is true
or not and being as rational and not emotional as possible.
When you do that by writing you're gonna be more objective
and as a result you might be able to take away some
of the power
of those thoughts where you still might feel sad
and all the negative thoughts that might come your way
but they won't drag you down as deeply
as they would had you not done this process.
- [Doctor] What we're going to do
is to run some genetic tests
and run some laboratory test and hopefully we'll
be able to determine the general cause of his condition.
- [Narrator] These are the words Kaylene
has been waiting decades to hear,
but to fully understand Nicky's condition
he will also need an MRI scan.
- Yeah.
- [Narrator] Something he's never had done before
- And he has to lay incredibly still
'cause any kind of movement
MRI will create an unusable image.
- [Narrator] The MRI suggests Nicky's brain was damaged
in the early months of pregnancy,
which would account for his lack
of development and would also explain his blindness.
- I think it's an infection
(indistinct conversation)
TORCH infection.
- [Doctor] The examination of Nicky's chromosomes
didn't show anything except for normal male.
There was nothing genetically there that would account
for his condition.
It's at least a relief to know this has no genetic basis
so your other children probably don't have
any cause to worry.
- That is the purpose of genetic testing.
A lot of times folks are running to get genetic testing
for the fun of it or just to to find out.
And it's very dangerous because you can get some information
that you can't adequately act upon and in times you
might even get information that you'll act upon
in a negative way.
What do you do with information to find out
that you have a low risk for developing diabetes?
Do you start eating more sugar?
- [Narrator] After 40 years Kaylene has the answers
she's so desperately wanted.
- [Kaylene] After Dr. Walker explained everything to us,
Nicky got off my lap
and went,
- Aw.
- [Kaylene] Went over to Dr. Walker
and now we know what it's --
- That's sweet.
I didn't expect that.
- [Kaylene] But I know, so.
- [Mrs. Lewis] Alex just opened up the door
and his eyes were popping
out his head and his, he didn't have his top
on and his whole top half was just purple.
- Right away my mind goes
to something related to the thyroid hormone because
of exophthalmos commonly associated with thyroid disease.
- [Mrs. Lewis] He didn't really know if I was there or not.
He was like going unconscious.
I didn't know what this was.
You know, for me he had the flu.
- No, no, no.
That's not a flu.
That's some kind of shock that a person's going into.
When the blood pressure's falling so rapidly
you're not getting enough circulation
to vital organs, you start dying.
- [Dispatcher] Ambulance emergency,
tell me exactly what's happened.
- [Mrs. Lewis] My husband's body is full of ra --
It's just rash, just looks at state.
He's had the worst, worst headaches
for like two or three days, like a crippling headaches.
- Whenever we hear worst headache of our life
we think thunder clap headache
and right away we start getting imaging.
- [Dispatcher] Been vomiting has he?
- [Mrs. Lewis] Yeah.
And he can't urine
and it's just always just blood coming out.
He's just aching, he's just aching.
- I wouldn't bring up the rash first
because what's gonna happen is they're right
away gonna think okay, non-serious emergency.
But if you open with,
this the worst headache of a person's life
and they're urinating and it just exploding with blood,
that changes the triage situation quickly.
This is why as a medical professional you have
a little bit more success when going
through the traditional medical system that you
understand the things to flag early on
in order to get the right attention.
- [Mrs. Lewis] Well, when we got into the ambulance
and they sort of get him some penicillin,
I was thinking, Yeah, God, he's gonna be okay now.
He's, you know, he's in safe hands now.
- Until you're in the hospital, you're not in safe hands.
- [Narrator] Alex's flu-like symptoms were caused
by a common bacteria normally found harmlessly
on the surface of the skin.
- Strep.
- [Narrator] In an extraordinarily rare case,
streptococcal strand A or toxic shock syndrome,
had entered Alex's body and was attacking it.
- Traditionally, when you hear in media toxic shock syndrome
you're thinking of staph infection
usually associated with tampon use.
But this is group A strep toxic shock syndrome,
which is different.
The mortality rate and the idea that you die is much higher.
The rate which you die.
- [Mrs. Lewis] Everything was dying, all his toes were dying
all his fingertips were dying.
All his ear lobes, his nose.
- We don't know why it happens in some people.
Usually we think it's because of a cut that the bacteria
gets in and then if they have a weaker immune system
for whatever reason, they get this really bad infection
with the group A strep.
But what's actually happening is the group A strep
bacteria forms super antigens, which cause an overreaction
of your immune system, if you will, where they
create massive inflammation, massive cytokine release, and
as a result the damages all your tissues.
Like across your whole body.
There's been some controversy about removing that tissue,
perhaps maybe doing a watchful waiting period when
you're giving the antibiotics
and seeing if the person can recover.
- [Narrator] Over nine months,
Alex undergoes 11 major operations to stabilize his body.
- Wow.
- [Narrator] Today Alex is ready
for the first operation on his mouth.
The family hope it will help rebuild his face
but it will be the first
in a series of operations that could last over two years.
- I wonder if it's the mouth,
the tongue, and the vocal chords that are impacted here.
Cause I haven't heard him speak yet.
- [Mrs. Lewis] Sam, to see his father like that
is quite scary to see him
looking like a completely different person.
- If you're not careful with the way that you describe this
to your child, you can create a long-term health anxiety
and a phobia of germs and that could become problematic
for a whole set of reasons because in many
of these instances, you can't protect yourself from this.
This can just happen.
Like imagine every little cut you've ever had.
Have you taken proper care of it to the nth degree?
No, it's impossible.
And as a result, like certain things are outside
of our control
but explaining that to a child is not the easiest thing.
- [Narrator] Alex is now being looked after
by a carer at home while he continues his rehabilitation
and surgery on his mouth.
Having been given prosthetic arms for the first time,
Alex will attempt to learn basic tasks again.
- I will pick that, I'll pick that bit up first.
Pick that bit up first.
- Mm-hmm.
- And then, oh see wrong way up, that way up.
And then do a that.
- Sure.
- And just try picking that up with your, with your hook.
(glasses clinking)
- So...
- It's like learning to walk all over again.
Basically what happens is you're retraining your nerves
and your muscles to fire in a new way by seeing feedback
what's happening to the hook and trying to pair that
with the different neurologic signals that you're sending
to new muscles.
- The cost of it all told
with prosthetics is about 24 and a half thousand pounds.
- Wow.
- That money is, is worth every penny for it.
- Now as the time's going by
I see something new happen every week.
I see him now open up a fridge.
I see him now pour himself a drink of squash.
All of this is attitude of mind and life.
If you want your life, you will go out and get it.
- It also helps that he has a really strong support system
with his family that's there for him
that's caring for him, that's allowing him transportation,
having the funds to buy that bicycle.
You know, all those things are really important
and not everyone has access to them.
Click here to find out what clothes are bad
stay happy and healthy.
(hip hop music)