Parents of Infants and Children with Kernicterus
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- เผยแพร่เมื่อ 12 ก.พ. 2017
- PICK is a parent-run nonprofit (501c3) dedicated to education and prevention of kernicterus (KI) as well as support and research for families affected by KI. (pic-k.org)
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I am a first year medical student. Thank you for making me aware of what it is.
Any physician that misses this on a newborn screen should have their license revoked. It should be 0 cases of this.
Truth
I agree with you
my daughter was born healthly. she is now one years old. she has kernicterus. As a mom i struggle with how all this happen and watching this video brought me to tears. I felt alone and see everybody body else go through what i am going through. Its hard to understand emotionally. Im going to school for nursing and one day save babies and families so they do not have to go through what im going through to this day. Thank you.
What was Her bilirubin level?
i am male,19 and suffered from Kernicterus , i HATE my parents for not getting me treated even tho they could but they didn't BECAUSE doc said they need to change entire blood of my body ,dad of my dad i.e my unorthodox grandfather didn't agree to getting blood changed because "its family blood" and they just left it untreated
SO I HATE MY PARENTS FOR DOING THIS TO ME!
thank you for this video, i commonly use this to stress the relevance of bilirubin screening in teaching commitments to nurses and midwives
Male,19 here
my parents left it untreated for me because of my grandfather's unorthodox thinking that "its family blood and we won't approve blood transfusion" ,i know how hard it has been for me.
but yeah i am ready to do anything and go upto any length if i need to if it ever happens to my child because NO ONE's thinking is more important than my child
I’m so sorry. You don’t deserve that. I hope you can grow and forgive and make beauty with your story some day.
So sorry about that. They could have just left you under the sun or under UV Rays.... wishing you the best
How are you now ?
@@cjaims1646phototherapy isnt always effective, sometimes transfusion is the best treatment available
I am studying to become a lactation consultant. Thank you for the informative and touching video.
Tara - please don’t brow beat women into breastfeeding. Well fed is best...this nearly happened to my son who does have some emotional issues
I would like to report my case that I recently lost my newborn, was discharged from the hospital and little did I know how serious it was. with less than 5 days his bilirubin was 22 to 23 I noticed it was yellow and took it to the hospital. the same went to the ICU but unfortunately did not survive. there was no screening with an exam, and now only God can comfort such pain.
Good job!
I am a parent of a child with kernicterus. 100%Preventable
Sorry to hear that. My baby has jaundice at level 15 right now... I'm ready for the fight to get this thing outta my baby.
same here...how is ur child doing???
I am too a parent of a born healthy baby and suffered kernicterus, I hope there's a support group here in the Philippines, I feel alone in battling my son's life and feel like there's no hope that he (or me and my family) will have a normal life.
Thank you for sharing. I can't imagine the pain of feeling alone. Reach out to Pic-K and see if there's anyone in the Philippines!
There should be low threshold for bilirubin.
Creo que esto es algo que se puede evitar todo depende de las doctores que sean conscientes nones justo traer al mundo un niño sano y que por su negligencia su vida y la de sus padres cambie asi tan drasticamente.
Tengo una amiguita con este caso y es de bajos recursos los médicos no la tratan con respeto ni a ella ni a su bebé que malos parece que no fueran padres o madres.
I am looking to connect with a parent who has a school aged child with kernicterus
Any one share starting pic of baby with kernicterus in early age.one or two month
We should subject all children with hyperbilirubinaemia up to 9mmol /dl to phototherapy. Don't wait til it is 14mmol/dl.
Me too my baby was born healthy but i was shock after 5 days she was diagnosed kernicterus..
I’m so sorry about that. Check out Pic-k for a wonderful resource full of other parents who’ve also have a child with kernicterus. They’re beautiful people.
Quisiera férula para los pies de mi hijo ya q kernicterus dejó secuelas en él
My baby has his level at 15 right now thanks for the information. This Kenicterus won't affect my baby BOY. I SAID IT IN THE NAME OF JESUS.
Hi peter
My baby is also effected with kernicterus I just wat to know does babies effected with this can walk?? Plz help me
@@bhavyanaidu4421 Hey, My Babe is good now thanks God. Just follow what the Doctor say to you. Also, what is the level of Bilirubin on the body ??
My baby had billirubin level of 27. I freaked out. Normal now. Really hope there’s no damage
I was born with that level and nothing worked until they did an emergency blood transfusion... It had reach 30 by the time they did the blood transfusion and were expecting me to die. Luckily the only thing that I am aware of that I suffered from is hearing loss (look out for this in the coming years). So, hopefully your baby will turn out just fine as I was fortunate enough to have been.
@@jakefromsf7580 the photo therapy worked for him it just took longer than expected. He seems to be doing fine now being 1 month later.
@@Justin-Outdoors thats a relief
How is ur baby now
@@manteshhh doing great! Learning how to roll. Making eye contact learning how to hold things and laughs alot.
My newborn son is still in hospital and the first day he had up to 32 percent bilirubin in his blood . Today he is at 3 percent today. He underwent phototherapy for three days and was put on medication but I am still scared that he may have a disability despite the reassurance of the doctor. I need some more information
Hope he is doing fine ..please let me know did he get ultrasound and mri for his brain? As long as he has no seizures he should be fine
Please let us know how is your son...in same situation...right now .
😭😭
Can it happen in teenager
I am too a parent of a baby healthy born and suffered kernicterus
Thanks for sharing, Asma! Check out Pick for resources and to connect with other families who have a child with kernicterus.
Cute Angel so sorry
Quisiera saber que dice en español mi bebe tiene secuelas de kernicterus
Yo tampoco entiendo que dice y a mi hija le dió bilirrubinemia
I wonder how many got the vita k shot
Why?
Can some body help me can babies effected with kernicterus can walk?
She is very young.. Don't worry dear.. Every thing will be good soon.. All the best to nandaki.
i am also parent of a child that have kernicterus
Thanks for watching Rachelle, PIck is an excellent organization that provides education, support, and guidance to parents of children with kernicterus - I would check them out if you haven't already!
😊😊😊
at which month your child suffer from kernicters, my baby also suffer from hyperbillunbinia 21.63
@@MrsSingh-lr7be november 2014, my daughter suffered hyperbillunbia 39
My daughter was suffered from hyperbillunbia 30 she hit 30 in just 3 days and at 5 days she left this world.i tried everything to save her,i transfusion her blood even after doctor warns that is of no use now.