My grand-daughter Ellie, was born 13 feb 08 and had jaundice at birth. she had yellow eyes on discharge.
At home, when she visited, the midwife totally ignored all of our concerns about Ellie's jaundice, saying to keep her in the sun!?!(mid feb!). Little did we know the damage it could cause!!
On day 8, 20 feb, the same midwife did an urgent blood test, saying,"oh god, i wish i'd done this at the weekend" (4-5 days earlier). Ellie was admitted urgently with very high bilirubin levels (420+ ??what does this equate to?). She had single, then double, then triple therapy for approx 12-20 hrs, no transfusion!!. Then she was discharged after a couple of days with levels of 300+. After 7 wks, we thought Ellie was blind and she hadn't gained any weight (2oz since birth!). She was again admitted urgently to hospital and the peadiatrician, told us about brain damage caused by jaundice -- KERNICTERUS, he said it was very possible Ellie had it.
Since then, Ellie has seen many so-called specialists, many who know nothing about this condition so say its something else. Or if they have heard of it state that it doesn't happen!!
So far we have been told that her body jerks because her eyes are!!!(physiotherapist)?!? do they really think we are daft?!?
The electro diagnostics test results on 7th July 08, say she suffers with albinism, but she has full pigmentation and no retina problems?!Even the specialists and the visual science specialists were confused with these results.
The hearing specialist was very good, Ellie failed the hearing test and she explained how Kernicterus can damage the hearing processing, showing diagrams to help understand, and explaining about the auditory brain stem test Ellie would probably need.
Now the eye specialist has told us that Ellies eye condition may be... optic nerve hypoplasia (?mild septo-optic dysplasia). He is referring her to a pituatary gland specialist?!
He also stated that he had seen kernicterus babies (skeptical about how long since tho) and that Ellie couldn't be Kernicterus as those babies weren't as alert as he found her to be???!! Is this total ignorance??
What he is unaware of though is Ellie has had almost constant physio, massage and stimulation through talk touch taste and play by her family.
We have severe visual impairment, hearing loss and cerebral palsy in our family so are fully aware of how to give Ellie the encouragement and help she needs to achieve her potential.
As her Grandma (they call me EMMY!!) I have researched Kernicterus and am in full belief that this is the condition Ellie suffers with.
Ellie is very jerky in her body, her limbs are very stiff and she has many involuntary movements in her limbs and torso.
She has horizontal and vertical nystagmus, struggles to see upwards or more than about 4-6" in front of her face.
WE REALLY NEED ANYONE OUT THERE TO HELP US IN ANY WAY THEY CAN. WE NEED TO FIND A SPECIALIST THAT UNDERSTANDS THIS BRAIN INJURY OR HAS CARED FOR A CHILD WITH KERNICTERUS, SOMEONE THAT KNOWS WHAT IT IS ALL TRULY ABOUT, SO WE CAN HAVE A SECOND OPINION AND HOPEFULLY LEARN THE TRUTH ABOUT BEAUTIFUL ELLIE...
THANK YOU FOR READING THIS PLEASE HELP IF YOU CAN.