Rooting for Roona (2020) - full transcript
A little girl named Roona Begum is born in the North East of India with an unprecedented head size caused by a birth defect. This is the story of one family and how they raise a child against insurmountable odds.
I'd always wished for a daughter.
Always.
A daughter knows her mother's sorrow.
Roona was conceived
a year after we got married.
On a day like this.
At home we call her Jannat,
which means heaven.
Everywhere else,
she's known as Roona Begum.
I see other kids
with their long hair tied beautifully.
So lovely!
I want Roona's hair
to grow like that someday,
but not right now.
I'm scared
she'll develop wounds on her head.
People told me
to give her away to an orphanage.
Am I crazy? I would never do that.
When she was born, they did a CT scan.
They told us
there was "water on the brain."
We were told if we took her out of
the state for treatment, she would live.
If not, we might lose her.
We live a hand-to-mouth existence.
How could we afford that on daily wages?
When people first saw Roona,
they said we were being punished
for our sins.
I try not to worry.
I believe she'll get better.
She should be with us,
whether she survives or not.
We will never abandon our child.
We'll care for her,
no matter how hard it is.
We want her to get better,
to walk and to talk.
It was 12th April, 2013.
I was shooting daily-life photography
in a brick field over there.
So, while shooting, one of the guys
came around and he said,
"There is a girl with a big head.
It's just like an alien to us.
You go and see over there.
You'll find something interesting."
Our photographer in Tripura
sent in, I think, three photographs
of baby Roona.
And our photo editors
got incredibly excited,
because it's such
an unusual and strong image
and it's unusual
to see such advanced hydrocephalus.
We did one story on Saturday on the family
and then it just exploded globally.
We started getting emails,
phone calls from around the world,
from people saying how can they help.
At that point, I think The Daily Mail
had already done a piece
and spoken to a doctor in London who said
nothing can be done about this child.
I mean, essentially gave
a very bleak outlook.
That's when I called Fortis.
They put me in touch
with Dr. Sandeep Vaishya,
who's their head of neurosurgery.
He said, "If she is responding
emotionally to things
and if she can move the rest
of her body, maybe there is hope."
Dr. Sandeep Vaishya,
an Additional Director of Neurosurgery
at Fortis, joins us.
-Sir, this is an 18-month-old girl, so...
-Right.
...is this curable?
There's a way to treat--
Yes. Of course.
I've not seen the patient,
but I have seen the photo.
This is one of the biggest head sizes
I have ever seen.
In this case it has to be done
as early as possible.
The news has made us very happy.
We might be able to take Roona
outside the state and make her better.
Everybody is praying for Roona.
It is 94.
When I was first told
that her head size was 36 inches,
I thought that the person
was mixing inches with centimeters.
There were pressure sores
on the back of her head.
Her nutritional status was quite bad.
She was quite malnourished.
Continuous cough, a bit of a temperature.
We are taking care of those things now.
We did MRIs of the brain and spine.
We did an Echo of the heart to rule out
other congenital abnormalities.
Her spine was fine. The Echo was fine.
There are a lot of risks and complications
involved in this kind of surgery.
Roona will be fine.
She is under anesthesia.
She won't feel the pain.
She seems much better.
I am still hopeful for her.
Now you see, previously the brain
was so tight, but now it's more lax.
Now, one can easily press it because we've
drained the fluid. It's flat here now.
So, we'll keep on tightening this
to make it smaller and smaller.
And ultimately, she will have
to undergo multiple surgeries
to remodel the bones
and shape of the skull.
Roona has never cried this much.
I can't come to terms with this.
I'm so grateful
that my daughter is still fighting.
She is our only child.
If we can't save her,
there's no point to our existence.
She has withstood the surgery quite well.
All her parameters are fine.
I expect a good recovery for her.
She's endured five surgeries.
Other children might not--
I never imagined
my daughter would have so much patience!
Five surgeries is a big deal.
My daughter is so strong.
The doctors said
that when we come back later,
they'll operate
to make her head even smaller.
She can see now.
She looks much better than before.
Yes. When we call her she responds.
As long as there is life and strength
in me, I will do whatever it takes.
I'll do it
so I can run with Roona one day.
I can never abandon Roona.
Jannat!
Where are you, Jannat?
Look here. Your mom is sweeping the room.
You know, you'll have to do this one day.
You'll have to cook.
You'll have to make rice and feed people.
You'll do all that, won't you Jannat?
You can do it.
Can't you Jannat?
No, it's fine.
Leave it.
You don't have to do any work. Let it be.
I'll do it myself.
I'll take care of you. I'll feed you.
Don't cry. Stay! You'll fall.
You don't have to worry
about work. I'm here.
As long as I'm here,
you don't have to worry about anything.
What's worrying you?
What is my Roona so worried about?
Stay! Calm down.
There's no need for you to do any work.
I met Abdul when I was visiting my cousin.
It didn't start out
as a romantic relationship.
At the time, he was just a guest to me.
After a few days,
he left for Agartala for work
and I went home.
He called me immediately.
I was on my way home.
He asked for my address and I gave it.
He visited me every week after work
and we grew close.
His parents didn't want us to get married.
Abdul declared
that if he couldn't marry me,
he would kill himself.
It will take time for her
to walk and talk and to be normal.
We're prepared to wait,
as long as she's healthy and alive.
Her dad bought this dress for her.
He bought it the day before Eid.
Look at them!
Yes! You recognize them.
Yes, you do.
Even without seeing them for so long.
Wave to them.
Wave.
Meet my cousin.
Are you well?
Mom?
This is my mother.
-They're making a film on Roona.
-Good.
I never went anywhere without my sister.
My sister is my whole life.
Nothing is more important to me
than my sister.
Everything else is on one side
and she's on the other.
I don't have kids,
but I'm the craziest about children.
The day Roona was born,
the nurse handed her to me.
She didn't open her eyes for a long time.
When she finally did,
I couldn't hold back my tears.
Do you want a biscuit, Roona?
I would keep Roona with me
all the time if I could.
Give her some water.
She just had a fall
and she can't even tell us how she feels.
Don't be afraid.
Your mom and dad are here.
There's nothing to be afraid of.
Say something.
Let's see that smile.
Can you smile for us?
How can she smile when she's so scared?
Actually, um,
this is a surgical problem.
It's an acute surgical problem.
She has hydrocephalus.
A pediatric
or neurosurgical intervention is required.
Now, she has suffered trauma.
The trauma is also
a surgical consideration.
I cannot comment
on anything without the reports.
Is anything wrong because of the fall?
There is no serious problem.
The surgeon who is on call
will come and take a look at her.
I can't say anything
till I see the reports.
Does she need any treatment right now?
I don't know.
I'm not aware of her medical history.
Are you saying
the fall hasn't affected her?
Only her doctor can tell you that.
We spoke to Roona's doctor in Delhi,
Dr. Sandeep Vaishya.
We sent him the CT scan.
He examined it
and said that it's a superficial injury.
He said there's nothing to worry about.
I'll be very happy
when she's healthy and well.
I hope she'll be able
to take care of herself in the future.
I don't want her to be illiterate like us.
Sir!
Is she better than before?
She's much better.
Her head is much smaller.
There's a lot of improvement.
Does she eat properly?
She can't eat on her own. We feed her.
Can she walk?
She can't walk or sit up.
We have to help her sit.
Can she speak at all?
She tries to speak but isn't able to.
She looks much healthier.
Will you bring her to school
when she's better?
Yes.
Sometimes, Roona's illness frustrates me.
I try to suppress my emotions,
but it's hard.
Considering her condition,
how can we think of another child?
Both children will suffer.
We don't want that.
There is a time for everything,
including having children.
I didn't understand that at first.
If I were single, I'd be carefree
and go wherever I wanted.
So what if I feel like leaving?
A person can't just leave their home.
After all,
you can only find peace at home.
My son's name is Akhtar Hussain.
I feel bad telling you this.
I was worried that he wouldn't be normal.
We consulted health workers,
who told us it was safe
and that we should keep the child.
He's a blessing from God.
Are you staring me down?
Who's there when the baby and I
are in trouble, Abdul?
You or your family never help.
When we're in danger,
there's no one by our side.
He doesn't care
about what the doctor says.
He doesn't care what medicines she needs.
He doesn't care
about admitting her to the hospital.
He just talks.
Let it go. She'll scream again.
Why shouldn't I be angry?
Last night he called and said,
"You have to be home
or else there will be trouble
waiting for you."
Are you showing your temper?
Now that there are people in the house,
you want to show them who the boss is?
Married couples fight.
We tolerate the hard times, don't we?
People only get married once. Not twice.
We met Dr. Sandeep Vaishya in Delhi.
He said that Roona's final surgery
has to happen as soon as possible.
The more you delay it, the lesser
her chances of walking or recovering.
I would want her to have the operation.
Both Fatema and I agreed
that we'll go in two or three months.
The big doctors are asking us
to get it done.
The smaller doctors, in the hospital here,
are saying not to.
The doctors aren't guaranteeing
that she'll walk and talk
after the surgery.
If there was a guarantee,
it would be different.
I'm worried about the final surgery.
She's here now and we get to talk to her.
What if things get worse
instead of better?
That's my fear.
How old is he?
He's around one year and six months old.
Is he very different from Roona?
Roona! She's your older sister, isn't she?
Akhtar hits his sister.
He hits me as well,
but he's afraid of his father.
If I scold Roona, he comes to watch.
They are both little rascals.
That rascal and this rascal.
When one is in trouble,
it makes the other happy.
Shall I scold you now?
When Akhtar was born, you all told us
to complete Roona's surgeries
within a month and a half.
We've been thinking about it for a while.
If we remain scared of the surgery,
she will always be like this.
Now, I'm braver and stronger
than I used to be.
Aunty! Pray for my daughter.
We're going back to Delhi tomorrow.
Where are you going, Roona?
So, are you finally going alone?
Don't cry, baby. Don't cry.
Say bye to your dad.
What do you think, doc?
Let's do a CT scan then see.
Perhaps... I feel that
we can still do the final surgery.
I told you yesterday
that we may not be able to do anything,
but now I feel we can.
First, I need to see a CT scan.
All of this is still bulging out a lot.
Last time I saw her,
the bones had still not fused.
All the bones have grown
and completely fused.
Obviously, with chicken pox,
we can't do anything.
We will call her back
when she has recovered from chicken pox.
I am still hopeful for her.
The doctor told us
to come back in a month,
once she has recovered from chicken pox.
Or else she would have had
the surgery by now.
Where are you going?
Are you going somewhere?
Are you going somewhere?
Now, drink.
When she's better, I'll ask her,
"Roona, do you know what happened to you?
You were operated on
and look how happy you are now!
Everyone holds you close.
Everyone loves you."
I'll tell her everything.
You've left my home empty.
How will I live?
Go! Leave me and go.
Leave me and go.
We have to wash her head first.
People always told us to give her away,
but we decided Roona would stay with us.
In life or death.
We believe our tears
hurt the person who has passed on.
It would mean we didn't take care of her.
So, I try not to cry.
Akhtar would have enjoyed having a sister.
No parent should have to go through
what I went through.
I often see Roona in my dreams.
She grew up to be prettier than ever.
We didn't have to worry
about getting her married.
Any boy who saw her liked her.
She was accepted.
In my dreams, she smiles.
She looks up at the sky and she plays.
I will remember Roona
for as long as I live.
Subtitle translation by Neena Jhanjee
Always.
A daughter knows her mother's sorrow.
Roona was conceived
a year after we got married.
On a day like this.
At home we call her Jannat,
which means heaven.
Everywhere else,
she's known as Roona Begum.
I see other kids
with their long hair tied beautifully.
So lovely!
I want Roona's hair
to grow like that someday,
but not right now.
I'm scared
she'll develop wounds on her head.
People told me
to give her away to an orphanage.
Am I crazy? I would never do that.
When she was born, they did a CT scan.
They told us
there was "water on the brain."
We were told if we took her out of
the state for treatment, she would live.
If not, we might lose her.
We live a hand-to-mouth existence.
How could we afford that on daily wages?
When people first saw Roona,
they said we were being punished
for our sins.
I try not to worry.
I believe she'll get better.
She should be with us,
whether she survives or not.
We will never abandon our child.
We'll care for her,
no matter how hard it is.
We want her to get better,
to walk and to talk.
It was 12th April, 2013.
I was shooting daily-life photography
in a brick field over there.
So, while shooting, one of the guys
came around and he said,
"There is a girl with a big head.
It's just like an alien to us.
You go and see over there.
You'll find something interesting."
Our photographer in Tripura
sent in, I think, three photographs
of baby Roona.
And our photo editors
got incredibly excited,
because it's such
an unusual and strong image
and it's unusual
to see such advanced hydrocephalus.
We did one story on Saturday on the family
and then it just exploded globally.
We started getting emails,
phone calls from around the world,
from people saying how can they help.
At that point, I think The Daily Mail
had already done a piece
and spoken to a doctor in London who said
nothing can be done about this child.
I mean, essentially gave
a very bleak outlook.
That's when I called Fortis.
They put me in touch
with Dr. Sandeep Vaishya,
who's their head of neurosurgery.
He said, "If she is responding
emotionally to things
and if she can move the rest
of her body, maybe there is hope."
Dr. Sandeep Vaishya,
an Additional Director of Neurosurgery
at Fortis, joins us.
-Sir, this is an 18-month-old girl, so...
-Right.
...is this curable?
There's a way to treat--
Yes. Of course.
I've not seen the patient,
but I have seen the photo.
This is one of the biggest head sizes
I have ever seen.
In this case it has to be done
as early as possible.
The news has made us very happy.
We might be able to take Roona
outside the state and make her better.
Everybody is praying for Roona.
It is 94.
When I was first told
that her head size was 36 inches,
I thought that the person
was mixing inches with centimeters.
There were pressure sores
on the back of her head.
Her nutritional status was quite bad.
She was quite malnourished.
Continuous cough, a bit of a temperature.
We are taking care of those things now.
We did MRIs of the brain and spine.
We did an Echo of the heart to rule out
other congenital abnormalities.
Her spine was fine. The Echo was fine.
There are a lot of risks and complications
involved in this kind of surgery.
Roona will be fine.
She is under anesthesia.
She won't feel the pain.
She seems much better.
I am still hopeful for her.
Now you see, previously the brain
was so tight, but now it's more lax.
Now, one can easily press it because we've
drained the fluid. It's flat here now.
So, we'll keep on tightening this
to make it smaller and smaller.
And ultimately, she will have
to undergo multiple surgeries
to remodel the bones
and shape of the skull.
Roona has never cried this much.
I can't come to terms with this.
I'm so grateful
that my daughter is still fighting.
She is our only child.
If we can't save her,
there's no point to our existence.
She has withstood the surgery quite well.
All her parameters are fine.
I expect a good recovery for her.
She's endured five surgeries.
Other children might not--
I never imagined
my daughter would have so much patience!
Five surgeries is a big deal.
My daughter is so strong.
The doctors said
that when we come back later,
they'll operate
to make her head even smaller.
She can see now.
She looks much better than before.
Yes. When we call her she responds.
As long as there is life and strength
in me, I will do whatever it takes.
I'll do it
so I can run with Roona one day.
I can never abandon Roona.
Jannat!
Where are you, Jannat?
Look here. Your mom is sweeping the room.
You know, you'll have to do this one day.
You'll have to cook.
You'll have to make rice and feed people.
You'll do all that, won't you Jannat?
You can do it.
Can't you Jannat?
No, it's fine.
Leave it.
You don't have to do any work. Let it be.
I'll do it myself.
I'll take care of you. I'll feed you.
Don't cry. Stay! You'll fall.
You don't have to worry
about work. I'm here.
As long as I'm here,
you don't have to worry about anything.
What's worrying you?
What is my Roona so worried about?
Stay! Calm down.
There's no need for you to do any work.
I met Abdul when I was visiting my cousin.
It didn't start out
as a romantic relationship.
At the time, he was just a guest to me.
After a few days,
he left for Agartala for work
and I went home.
He called me immediately.
I was on my way home.
He asked for my address and I gave it.
He visited me every week after work
and we grew close.
His parents didn't want us to get married.
Abdul declared
that if he couldn't marry me,
he would kill himself.
It will take time for her
to walk and talk and to be normal.
We're prepared to wait,
as long as she's healthy and alive.
Her dad bought this dress for her.
He bought it the day before Eid.
Look at them!
Yes! You recognize them.
Yes, you do.
Even without seeing them for so long.
Wave to them.
Wave.
Meet my cousin.
Are you well?
Mom?
This is my mother.
-They're making a film on Roona.
-Good.
I never went anywhere without my sister.
My sister is my whole life.
Nothing is more important to me
than my sister.
Everything else is on one side
and she's on the other.
I don't have kids,
but I'm the craziest about children.
The day Roona was born,
the nurse handed her to me.
She didn't open her eyes for a long time.
When she finally did,
I couldn't hold back my tears.
Do you want a biscuit, Roona?
I would keep Roona with me
all the time if I could.
Give her some water.
She just had a fall
and she can't even tell us how she feels.
Don't be afraid.
Your mom and dad are here.
There's nothing to be afraid of.
Say something.
Let's see that smile.
Can you smile for us?
How can she smile when she's so scared?
Actually, um,
this is a surgical problem.
It's an acute surgical problem.
She has hydrocephalus.
A pediatric
or neurosurgical intervention is required.
Now, she has suffered trauma.
The trauma is also
a surgical consideration.
I cannot comment
on anything without the reports.
Is anything wrong because of the fall?
There is no serious problem.
The surgeon who is on call
will come and take a look at her.
I can't say anything
till I see the reports.
Does she need any treatment right now?
I don't know.
I'm not aware of her medical history.
Are you saying
the fall hasn't affected her?
Only her doctor can tell you that.
We spoke to Roona's doctor in Delhi,
Dr. Sandeep Vaishya.
We sent him the CT scan.
He examined it
and said that it's a superficial injury.
He said there's nothing to worry about.
I'll be very happy
when she's healthy and well.
I hope she'll be able
to take care of herself in the future.
I don't want her to be illiterate like us.
Sir!
Is she better than before?
She's much better.
Her head is much smaller.
There's a lot of improvement.
Does she eat properly?
She can't eat on her own. We feed her.
Can she walk?
She can't walk or sit up.
We have to help her sit.
Can she speak at all?
She tries to speak but isn't able to.
She looks much healthier.
Will you bring her to school
when she's better?
Yes.
Sometimes, Roona's illness frustrates me.
I try to suppress my emotions,
but it's hard.
Considering her condition,
how can we think of another child?
Both children will suffer.
We don't want that.
There is a time for everything,
including having children.
I didn't understand that at first.
If I were single, I'd be carefree
and go wherever I wanted.
So what if I feel like leaving?
A person can't just leave their home.
After all,
you can only find peace at home.
My son's name is Akhtar Hussain.
I feel bad telling you this.
I was worried that he wouldn't be normal.
We consulted health workers,
who told us it was safe
and that we should keep the child.
He's a blessing from God.
Are you staring me down?
Who's there when the baby and I
are in trouble, Abdul?
You or your family never help.
When we're in danger,
there's no one by our side.
He doesn't care
about what the doctor says.
He doesn't care what medicines she needs.
He doesn't care
about admitting her to the hospital.
He just talks.
Let it go. She'll scream again.
Why shouldn't I be angry?
Last night he called and said,
"You have to be home
or else there will be trouble
waiting for you."
Are you showing your temper?
Now that there are people in the house,
you want to show them who the boss is?
Married couples fight.
We tolerate the hard times, don't we?
People only get married once. Not twice.
We met Dr. Sandeep Vaishya in Delhi.
He said that Roona's final surgery
has to happen as soon as possible.
The more you delay it, the lesser
her chances of walking or recovering.
I would want her to have the operation.
Both Fatema and I agreed
that we'll go in two or three months.
The big doctors are asking us
to get it done.
The smaller doctors, in the hospital here,
are saying not to.
The doctors aren't guaranteeing
that she'll walk and talk
after the surgery.
If there was a guarantee,
it would be different.
I'm worried about the final surgery.
She's here now and we get to talk to her.
What if things get worse
instead of better?
That's my fear.
How old is he?
He's around one year and six months old.
Is he very different from Roona?
Roona! She's your older sister, isn't she?
Akhtar hits his sister.
He hits me as well,
but he's afraid of his father.
If I scold Roona, he comes to watch.
They are both little rascals.
That rascal and this rascal.
When one is in trouble,
it makes the other happy.
Shall I scold you now?
When Akhtar was born, you all told us
to complete Roona's surgeries
within a month and a half.
We've been thinking about it for a while.
If we remain scared of the surgery,
she will always be like this.
Now, I'm braver and stronger
than I used to be.
Aunty! Pray for my daughter.
We're going back to Delhi tomorrow.
Where are you going, Roona?
So, are you finally going alone?
Don't cry, baby. Don't cry.
Say bye to your dad.
What do you think, doc?
Let's do a CT scan then see.
Perhaps... I feel that
we can still do the final surgery.
I told you yesterday
that we may not be able to do anything,
but now I feel we can.
First, I need to see a CT scan.
All of this is still bulging out a lot.
Last time I saw her,
the bones had still not fused.
All the bones have grown
and completely fused.
Obviously, with chicken pox,
we can't do anything.
We will call her back
when she has recovered from chicken pox.
I am still hopeful for her.
The doctor told us
to come back in a month,
once she has recovered from chicken pox.
Or else she would have had
the surgery by now.
Where are you going?
Are you going somewhere?
Are you going somewhere?
Now, drink.
When she's better, I'll ask her,
"Roona, do you know what happened to you?
You were operated on
and look how happy you are now!
Everyone holds you close.
Everyone loves you."
I'll tell her everything.
You've left my home empty.
How will I live?
Go! Leave me and go.
Leave me and go.
We have to wash her head first.
People always told us to give her away,
but we decided Roona would stay with us.
In life or death.
We believe our tears
hurt the person who has passed on.
It would mean we didn't take care of her.
So, I try not to cry.
Akhtar would have enjoyed having a sister.
No parent should have to go through
what I went through.
I often see Roona in my dreams.
She grew up to be prettier than ever.
We didn't have to worry
about getting her married.
Any boy who saw her liked her.
She was accepted.
In my dreams, she smiles.
She looks up at the sky and she plays.
I will remember Roona
for as long as I live.
Subtitle translation by Neena Jhanjee