They are in the shadows.
Babes are at risk. (Jaundice can become toxic when not managed properly.) Children live with no viable treatment options. Research funds are needed. Adults live in immense difficulty. Families struggle to hold together fractured pieces of their lives.
…all because of jaundice.
There are those shaped by “the K word” and those who are threatened by it.
They live in the shadows. Many babes are affected by jaundice, but not all escape it unscathed. Here in the US, there is no reporting system for kernicterus. Due to the negligent nature of the diagnosis and the ethical concerns that accompany it, it is not always diagnosed either. How many are living with kernicterus and do not know it? The effects of kernicterus take months and years to become apparent. (Newborns don’t need wheelchairs. They aren’t expected to walk or talk. The movement disorders, sleep disorders, hearing loss, vision loss etc all become apparent as children miss milestones. Without proper analysis, the k word is easily swept under the rug, misunderstood, mislabeled.
And what of those living with the milder effects? Neurological hearing loss (that can only be discovered under sedation with a test that measures brain wave response to sound.) How often is this misread as behavioral – smart children with unpredictable hearing and difficulty communicating? Milder forms of kernicterus also seems to come with hyperactivity – how often is that mistaken for other disorders?
The truth is that the numbers of kernicterus are hidden in the shadows.
Our kids, those in picK are likely the tip of the iceberg, and our numbers grow weekly. And the truth is – one case of kernicterus is one case too many. The effects are just too catastrophic!How do we rescue? How do we make the change? How do we illuminate?
How do we?
- On the front end, we turn the light on! We spread the word – jaundice can do that, and it doesn’t have to! TEST! Prevention.
- For those living with the K word, we support the research that will lessen the load of that K. Research for viable diagnostic tools and treatment options that can lessen the effects of the K…diminishing it’s effects. Rescue.
My son will be 29 years old this March. My son’s birth jaundice went to K by 3 days old. Although treatment was finally given, it was to late. The first 17 years of his life we were alone with this diverse injury, as he was listed in NORD “one surviving family”. His story is written in a book called “The Joy of a Heartbreak”. Sadly, today it is back on the medical scene. Yet thankfully there is more information, medical help and lawsuits for the children who suffer from this preventable injury. As the mother of Michael-david, I hope for the best to all parents or caregivers of these innocent babies. For my son and I, we walked this path alone. Your journey is just beginning but thankfully you will find the help you will need for legal, medical, educational and political means through P.I.C.K..
My son already turned 10 years, having kernicterus though had immediate 2 blood transfusion within 2-3 days of birth, his motor movement is damaged, he cannot listen, speak, sit, stand, walk, even cannot eat.
Is deep brain stimulation helpful in his case.
An aggrieved father. We stay in Mumbai India.