CBS/AP/ November 2, 2012, 8:51 AM

Nickolas Coke, boy born without brain, dies at 3

PUEBLO, CO. Nickolas Coke, a Colorado boy who survived three years despite being born without a brain, has died.

The boy from Pueblo, Colo., was born with anencephaly, a condition that caused him to only have a brain stem.

The National Center for Biotechnology Information says most babies born with anencephaly live only a few days. The center says it occurs in 1 out of 10,000 births but the exact number is unknown because many of these pregnancies result in miscarriage.

Nickolas' grandmother, Sherri Kohut, tells KOAA-TV that she believes Nickolas came down with a virus. She says he had difficulty breathing Wednesday and eventually stopped. She says three attempts to revive him failed.

Relatives say Nickolas survived without special medical equipment but required several kinds of medicine.

Kohut says Nickolas taught his family how to love and about the strength of family. She recalls him laughing as he played among pumpkins recently.

"He was our hero because he showed the strength if I can do this anything can be done," Kohut told KOAA-TV. "He will always be remembered."

The exact cause of anencephaly is unknown, according to the National Institutes of Health, but possible causes include environmental toxins and low intake of folic acid by the mother during pregnancy.

The NIH says there is good evidence getting sufficient levels of folic acid could reduce chances of neural tube defects like anencephaly by 50 percent.

© 2012 CBS Interactive Inc. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed. The Associated Press contributed to this report.
41 Comments Add a Comment
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NHIE10101 says:
The family was doing what they wanted. They couldn't let go of the idea of having a son. Even if that meant that the child was disabled or sick. They were selfish people who only wanted to be martyrs in their own heads. Their suffering was a gift from "God."
Modernization has killed evolution. Instead of leaving the weak to wane away & prevent more illness, society cradles them & allows them to procreate. Bipolar disorder, ADHD, Schizophrenia. All of these would have been eradicated in pre-society. Instead of guarding the gene pool, we allow disease to survive, creating "compassion." Instead of keeping small populations, we spew forth more that we cannot support & when 1 child dies, we forget the starving, cold homeless people & animals. We forget about the wars we are constantly fighting, & the hurricanes people died in & worry over 1 family with 1 child doing just fine.
Abortion should be mandatory for hard drug users, individuals with genetic disorders passed down to their kids & the generally useless. We wouldn't need a March of Dimes if people would decide not to perpetuate illness as righteousness. Remember, cleanliness is next to godliness. So keep your nose clean...
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rlhiggins replies:
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This is the downside to social media. It provides a forum for idiots to demonstrate their stupidity to the world and to spread their hate. All of his other illogical "points" aside, anencephaly is NOT a genetic disorder. In fact, the cause is unknown at this time.

I have a suggestion for you NHIE10101, rather than curse the darkness why not try to light a candle. Since you don't seem to be too bright let me spell it out for you. Spend some of your energy trying to help the people you accuse others of forgetting. There are plenty of people in need of help but no one needs the BS that you are offering.
Petra-Slovakia replies:
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NHIE10101: You are absolutely right! I hope more people would be so enlightened. Those who can not see the truth, just speak about "stupidity and hate"... Science is the light!
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fluorazapam says:
My daughter lost her first baby to anacephaly earlier this year. Yes God can be an *******. NIKOLAIT you are also an *******. Your are just a meatbag, with a brain.

My daughter chose to terminate her preganancy. It was not an easy decision. She loved the baby. But the problem was severe and obvious on the ultrasound images. There is a serious risk to the mother's health in attempting to carry an anacephalic fetus to full term. I supported her in the hardest decision she ever had to make. If she chose to go full term, and the baby survived however long it could, I would have supported her in that decision.

These decisions are highly personal. Cost should not have to be a factor. I work in the hospital where she was diagnosed. The day we got the news I walked through the huge crowd on the sidewalk who gathered there because there is no smoking on the hospital grounds. As I walked past all the pregnant women, and cardiac and cancer patients, chain smoking cigarrettes before their medical appointments, I thought about how unfair life is. Then I got over it.
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princessbinas replies:
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I feel really bad. No one should ever go through this. I hope one day they could find the cause of this and hopefully correct it before it's too late.
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shawnamarie223 says:
All I can say, one, I am so sorry for the loss of this or any other child. During pregnancy or after. After miscarrying more times that I would ever want any person to go through, this is the hardest thing any parent must go through. And second SHAME ON ALL OF YOU that use this forum to spewt this political rhetoric! What business of your if these parents chose to care for these children, who paid for what. Maybe you should direct this to a Nadia Sulamen's page. THAT is where I don't want my taxpayers money to go to. I would much rather help parents in need who deserve nothing but the best and hope that they will someday have their children to love and nuture with out the fear of when they will eventually watch their child pass. I applaud parents like this. God gave them a precious gift. It takes a special person to care for any child with a disability or life threatening disease. RIP babies....
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princessbinas replies:
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I am actually quite annoyed at the fact people think this poor boy isn't human. I actually feel really bad for him. It's just so sad. He never got to see this world. Never got to know what we know or do what we do. And I say a human is a human if the human has a brain or no brain. It's like saying a person with mental disorders like Autism/Aspergers isn't human; someone who is missing an arm. >:( I'm sure no one would want to know what it's like to not be able to feel, smell, see, hear, and taste. Those are wonderful senses that we all take for granted. Think of it please. He never did anything to harm us.
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LOVEURCHILD says:
I have a baby with anencephaly.... he will be 18 weeks old tomorrow and is alive and well.... he lives at home with me and my husband... he doesn't attend hospital or clinics. He has exposed brain tissue to which we apply a dressing twice a day. He takes a bottle feed every four hours. We buy his food. We buy the dressings for his head. We buy his clothes. We buy his medication. Can one of you people making negative comments tell me how this is costing the tax payers money?? Instead of hiding behind a username making comments about something you obviously know nothing about, go and read up on this condition. Stand up and face somebody who has had a child that has died whatever the reason and tell them their child wasn't worth it. I was dare anyone to tell me that my son's life isn't worth it... I can and will continue to do everything in my power to keep my son alive regardless of cost!!! And that cost is to me not you!!!!
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hattikat replies:
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Loveurchild you are to be Blessed for your decision to love and cherish your baby for as long as he is with you. I wish you strength and for your husband too!!Take a lot of pictures! My daughter died far to soon and I have no pictures at all, even tho I carry the face in my mind and heart, after forty two years I wish now I had asked at the hospital. Enjoy your son, laugh, hold and cherish him.Blessings.
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jackbrooklynny says:
NOT TRUE. YOUR INFORMATION IS INCORRECT:

I JUST SAW JOE BIDEN ON CSPAN AND HE LOOKS ALIVE AND WELL!
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bethani2012 says:
i had a little girl born with anecephaly altho she only lived for 15minutes it was the most magical 15mins of my life try avin to choose between killing your baby thru abortion or give them the choice to a life like any other disabled/poorly baby i had 2 miscarriages before bethani was conceived i seen a baby dancing round a screen with a healthy heartbeat i dont regret my decision to keep my brave little fighter 1 bit i bet nobody else on here has had a baby with anenecephaly so until you av how can u judge? you av no idea the pain you go thru knowing either way abortion/birth your guna lose youer baby i went into it with my eyes shut was abit naive thinking they got her diagnosis wrong she was truley beautiful ill always love her an i guarentee little nikolas family is exactly same av some respect!!!
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myownperson says:
i dont see how any body could watch that video and not if almost come to tears. this really breaks my heart, to have and have loved for 3 years then have it taken away from you. and notice there was no feeding tube, just medications, mainly for seizures. my heart goes out to this family. and for thse of you who are worried about how much money they "wasted" on keeping thier baby alive make me sick. unless youve been there no matter the stiuatoin you have no room to talk period. think about if it was one of your parents on the verge of dying, or a sibling you love dearly, what length would you go to keep them here and be as comfertable as possible? think about it but just remember if you have been there then you really dont know the true pain that comes with this
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hattikat replies:
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Beautifully said!!
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itgranny says:
http://www.youtube.com/watch?v=WMlVNFpzKNI
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nursedeb49 says:
I think you people first should learn to read, second learn to keep your mouth shut, it clearly says no medical devices were used, just medication, should we stop using medication on alzheimers patients, anyone with disabilites, what about diabetics who refuse to follow a diet or obese or whatever??? You people are heartless and did not live with the child so you don't know what the family saw!!! Obviously he head more brain material than most with the condition or he would not have lived 3 years, so keep your mouth shut and show a little compassion
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itgranny replies:
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Just nursing home care is 3 to 5 thousand a month. Add on top of that whatever feeding (stomach tubes or IV's or whatever). Then medications which we all know can be outrageous. I'm not sure how much (if any) this little person felt, but many end of life directives include no feeding-hydration and as a nurse, you should know why.

You tell us to show compassion, I wonder how much compassion you show when you see a homeless person or hear of a homeless family on the street. Or how much compassion you've shown with your pocket book during the aftermath of Sandy or Katrina. Or how much money you've sent to Ethiopia or Somalia because the only thing most of those kids need is 3 squares to thrive.

There are a lot of really sad things going on all around us. Hopefully one day we can take care of them all rather than trying to sort through case by case to pick and choose the worthiest of them.
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nursedeb49 says:
I think you people first should learn to read, second learn to keep your mouth shut, it clearly says no medical devices were used, just medication, should we stop using medication on alzheimers patients, anyone with disabilites, what about diabetics who refuse to follow a diet or obese or whatever??? You people are heartless and did not live with the child so you don't know what the family saw!!! Obviously he head more brain material than most with the condition or he would not have lived 3 years, so keep your mouth shut and show a little compassion
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