Parents of Infants and Children with Kernicterus, PICK, is a parent run non-profit on a mission to kick the K.
Understanding our organization means understanding that Jaundice can cause irreperarable harm.
Mismanaged Jaundice caused the K (kernicterus).
This one word forever altered us from “just parents” to:
Parents of Infants and Children with Kernicterus.
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.
In doing this, in illuminating the K, we can move toward being “just parents.” We can kick the K! Will you join us? Tell the world. Jaundice can do that, and it doesn’t have to.
We are small, but our voice is strong. Our entire organization is volunteer only. We are parents struggling to balance life with the K and a strong desire to help the world understand just how seriously jaundice needs to be treated.
Very few know what is at stake until it happens to them.
There is no THEY in this equation…only a WE.
We have an incredible resource in all of the families pouring heart and soul into this very worthy cause!
Sue Sheridan speaks of our beginnings here:
Our families connect for support and ideas in our private facebook group: Affected by Kernicterus.
I would like more information about the current organization. I can’t find the english version of web site. I had Kernicterus in 1949.
Podemos nos conhecer melhor? Sou brasileiro meu filho tem kernicterus? Qual seu skype ou facebook?
Linda, have you seen this site at http://www.pic-K.org. Also, please join us over at http://www.facebook.com/groups/kernicterus
I would love to help spread the word about Kernicterus. I find that because this is a “rare” occurrence, there is not much information about it online OR in medical books (I’m a former nursing student) or journals. I feel that this is just wrong and inconsiderate to those of us affected by The K. My daughter was diagnosed with jaundice at the hospital prior to discharge, and it was suggested that I sit with her in the sun a few hours a day. Unfortunately, the day we were discharged, there was a severe snow storm…hence, NO SUN! The end result was a bilirubin level of 36mg/dec, the highest her physician had ever heard of! She suffers from developmental delay til this day. I was online looking for some type of support group or information to help me understand the damages that have been caused and the long term effects, but to no avail.
So, in short, that is my story and I would love to raise awareness for all those others who may be in my predicament.
I am a 67 year old woman that had Kernicterus in 1949. I have moderate to severe hearing loss in both hears. I do have some balance issues too. About 5-10 years ago I wanted more information about the disease and I couldn’t find any. I finally learned about PICK. I also learned that the problem was solved for awhile. Now that the mother and baby are going home before the jaundice shows up. The parents aren’t told to watch for it so the condition gets worse before the parents know is going on. By that time some of the damage is done. I agree the medical staff need to educate people about Kernicterus so other children don’t to suffer.
PS I don’t Facebook.
Linda, thank you for contacting us! We will be having a conference in Kansas City in October 2018 and would love to see you there! We will be sure to email you the details as they become available!
Tamyka, I hope you found our group http://www.facebook.com/groups/kernicterus. We would love to have you over there!!! So sorry to be late in seeing your post.
Hello world,
My 51year old son developed kernicterus(bilirubin 32 after 4 days) in St Mary’s Teaching Hospital,Manchester.Not a day passes without me replaying those days of watching my child going more and more yellow and no one was interested !!!!!!!The levels were 7 day after birth(small transfusion) 16 the next day(small transfusion),32 hours later the bilirubin level was 32 – another incomplete transfusion – finally at a further count of 20 it was cleared.UNBELIEVABLE.I so often want to talk to some one and there is never any one there who could understand my sadness and anger.
Pat
Patricia, we are both saddened by your story and thankful that you found us! Our families with kernicterus are over on fb at http://www.facebook.com/groups/kernicterus We would love to have you join us! Miriam
Sent from my iPhone
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Hi pat. We’d love to have you join us over in our family group. So many great resources and listening ears for this difficult road!
You can find is at facebook.com/groups/kernicterus
Hello,
The g6pd Deficiency Foundation is establishing a CME course to prevent Kernicterus in newborns. Close to 30% of kernicterus cases are deficient with the enzyme G6PD. We are looking for organizations that would be interested in promoting this course to the medical community. We thought your organization would be a perfect fit. 🙂 Our mission is to bring forth awareness of G6PD deficiency to health providers and the public.
I hope you will consider this. Best always, Keely Harris (president/founder g6pdDF)
Hi Keely,
This is a wonderful idea! We’d love to hear more about it. I’ve sent you an email.
Miriam