It is estimated in sub-Saharan Africa
that 50 to 90 percent of babies born with sickle cell disease
die by 5 years of age.
Screening the babies for sickle cell disease
is now the most important public health activity we can do.
80% of babies born in the world with sickle cell disease
are born in sub-Saharan Africa.
Now we have treatments that not only can prolong life,
they actually make the disease expression milder.
So that these children don't need to die
and they also dont need to suffer.
This young man Caleb, who is now 11 years old,
was otherwise a typical sickle cell patient
who would get from time to time some pain or fever.
And then all of a sudden he develops this stroke,
not because of anything different about him
except he has sickle cell disease.
My name is John Dzido and with me is my son Caleb Dzido.
Caleb Dzido is 11 years of age, a sickle cell disease patient
with repeated strokes and multiple convulsions.
The strokes keep repeating or recurring.
Recurring with interrupted convulsions.
So we are always going in and out of hospital.
I have lost everything in life, even the mother,
the woman who bore Caleb had to leave
because things were not going the way she had hoped.
But I've stood my ground and I promise to hold his hand
even as he goes through this condition,
which he does not understand.
Caleb's needs are numerous.
He is not able to do anything.
He cannot walk, he can not feed,
he can not do anything for himself.
I am his hand, I am his head, I am his legs, I am his everything.
And I promise to do so till life is end and after.
When the sickle cell hemoglobin gives up its oxygen to the tissues,
which is also what hemoglobin is supposed to do,
it begins to deform and then they become also very sticky
And the body reacts as if there's a cut through the blood vessel.
So many many other cells come there as if to stop bleeding,
and with all those cells clogging up the vessel
there's no more blood flow.
I met the young woman that I eventually married.
We got married in 1970. When our son was born in May 1972,
three days after he was born we knew that he had sickle cell disease.
And were just lucky to be at yale at that time
because the only doctor in America who had started
testing babies for sickle cell disease at birth was at Yale.
A doctor for my son: that was never something I wanted to be.
But in 1974, Yale University required for medical students
to get your degree, you had to do some research.
So I went back to Kumasi to do my research
and it was my mother who was very religious who said
that this is your mission in life to do something for these children.
And I think between myself and my wife Janet,
we sort of decided to go two ways.
She said, "while you learn everything you can about this disease,
I will just be his mother."
I think his childhood was generally ok.
He was very interested in tech and he went to college
and then he found a young woman that he liked, they got together.
Together they got two children, two beautiful children,
who are our pride and joy at the moment.
He was sick for two days. I never expected that he was that ill.
The day he died I was with him.
I actually spent the night, left him because I had to go to work early.
So when I was leaving him that morning I knew he was in pain,
but I really didn't think that it was anything serious.
I spoke to him about 1:30 and he said yeah the pain was there,
but he was otherwise doing ok.
About 2 hours later my wife called me and said,
"something has happened to him."
And they tried to resuscitate him and they couldn't
and that was really a shock to me
that something could have happened so suddenly.
But I'm almost sure I know what it is, although they didn't,
the autopsy they did didn't really look for it carefully,
but I'm almost sure it was like a blood clot into his lungs.
If we could get all the children with sickle cell disease
to go through a similar life, then I would consider
that we've done pretty well with them.
We would like to screen every baby in the country for sickle cell disease.
But you have to have a place for the baby
to go for care before you start screening.
When we started that project, the newborn screening project,
the country had only one sickle cell center, at Korle-Bu.
We used the newborn screening program
to start a second one in Kumasi.
Now we have 18 that are active.
And so our friends Novartis, they want to help us open
a sickle cell center of excellence at each of the regional capitals.
So those will become the focal points of sickle cell care.
And one of the things that became very clear to us is that
managing the data around newborn screening was difficult.
So we approached Novartis and said that we really think
it would be very helpful if we could develop an app
for newborn screening management.
Its been a boon.
The nurses love having a mobile phone that has the app in it.
They all do texting to begin with.
And so when they are now taking information from the families,
they are putting it on the app.
The laboratories receive on their phones names, birthdays,
locations of the children that have been tested.
When they finish their work they just call up each child
and they put their results in.
When they sync it, it goes back to the nurses where they are,
you know, 180 kilometers away,
and they are able to begin the tracking.
So it shortens the time that the nurses have to find the baby.
There's an old drug called hydroxyurea.
In addition to being a treatment for certain types of leukemia
and other blood diseases, it helps to make sickle cell blood healthier.
And those who take it daily have fewer complications.
They dont get the pain as frequently as the others,
or when they get the pain it's not as severe.
We have children on hydroxyurea who have gone for five or six years
who have never come to the hospital for pain before
and they are forgetting what sickle cell disease is about.
That is very needed here in Africa.
What we are trying to do is to make
hydroxyurea accessible to everybody.
Once we establish all the centers of excellence in Ghana
and then Novartis is prepared to move into the other African countries,
then we shall be an example.
You've just met a young woman who we have just employed
and I don't know how her mother did it,
but when I met her she was about 10 years old
and this child has never felt that there's anything
she cannot do and here she is now.
She still has sickle cell disease.
She has learned to manage herself
and she can still get very seriously ill.
But her life has not become one of a victim
of her condition and one of shame.
I‘ve been living with sickle cell disease
and its been diagnosed since I was a baby.
My parents didn't wait till all the complications began
before they took me to the hospital.
Right from birth, it was known.
Living with sickle cell disease is not a death sentence.
I know I‘m not where I wished I want to be but,
I‘m hopeful I know that some day I‘m going to achieve my dreams.
What we have learned from newborn screenings
from the interventions that we do is that
these patients then grow up to become useful people.
They're not dependent.
Once every region has a center of excellence
where you can do screening and when you do the screening,
you know where to go,
I think we shall reach where we want to go.
