My baby was born healthy.
My baby was born healthy.
My baby was born healthy.
My baby was born healthy.
My baby was born healthy.
My baby was born healthy.
My baby was born healthy.
My baby was born healthy.
She just told me, you know what, go home.
Put him under the sun.
He just pressed on her skin and told me her color looked fine.
He never checked her bilirubin level.
Donovan is like many others with Kernicterus that was disregarded the very first and most
important moments of his life.
We never got a bilirubin number, but we were still sent home.
We were brought in the following Monday.
It turned out to be 41.7 but we still didn't get treatment until that night because it
wasn't taken seriously.
Kernicterus is brain damage due to excessive newborn jaundice or excessive newborn hyperbilirubinemia.
When bilirubin gets too high in the blood and moves out of the blood into the brain
usually in a newborn infant, then it can cause brain damage, known as Kernicterus.
It's because of the physical disability that they have abnormal movements.
When they try to talk it sounds very distorted.
They are almost like they are locked in, in that they can't express themselves, can't
communicate, and they can look like they are severely cognitively impaired, but in fact
they are quite intelligent, just trapped.
I was there and got the initial PICK - what became PICK parents together and then I have
watched this organization grow and do wonderful things.
One of the good things PICK has done is that they have raised awareness of Kernicterus.
They've gotten recommendations changed.
They've done a lot of education of doctors and parents, so PICK also brings families
together so that they can share the problems they've had and solutions to the problems
they've had, but also brings the patients together with the physicians and researchers
so we know what the problems are and we can help and know how to address them, and some
of the answers to how to treatments work come from parents and the internet and social media.
There is a wide connection over the internet that really can advance understanding, prevention
and research and treatment of Kernicterus must faster than it's ever been before.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
Totally preventable.
Kernicterus is totally preventable.
Kernicterus is totally preventable.
And let me say, I think this is a time of great hope for children and families with
Kernicterus.
It's a time of great hope for more understanding and ultimately better treatments for these
children and their families.
So...
Go pic-K!
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