This is great news and a blessing, this child is in our prayers. Also
there are dark recesses in Hell waitng for Insurance company execs. hope
they enjoy their ill gotten gains.

Seems odd that the story mentioned that the child’s surgery was not covered by medical insurance. Perhaps the insurance the person has is not that great to begin with. I noted there was no mention if the insurance was personally purchased or company supplied or if the family had lost their insurance due to job change (pre-existing condition), or even a mention if there was an employment change that the person was not yet “vested”.

However, the mention of it, the plug, seems just another tid-bit to push universal coverage for folks by implying that the procedure would be free or covered. That is hogwash. There are loads of medical procedures that, for example, Canada does not cover or do quickly. I am also reminded that my Father got cancer here in the USA, got treated immediately, and survived whilst my uncle, who lives in England, had the same cancer, was forced to wait, and died. In my opinion, the doctors made a “battlefield” choice and let him die to give treatment to younger and more fit people.

My prayers go out to him and his family. It is totally disgusting that this surgery is not covered by insurance. The last thing anyone in a medical crisis should have to worry about is how to pay for something that possibly could change the quality of life. Our health care system must be completely overhauled!

Maybe the insurers should have to stay up for 3 years without sleep to experience what the parents experienced. They might approve the next surgery for this problem.

I also have Chiari and was decompressed 8 years ago. Prior to decompression, I suffered from extreme insomnia that was characterizeed as idiopathic. I would go days with no sleep at all. I now sleep only about 3 to 4 hours a day but I am fine and feel great. I rarely feel sleepy regardless of how active I am. It is documented in the medical literature by a paper published in 2004 by Mueller and Oro in a prospective study that 70%+ of the Chiari population studied presented with sleep disturbances including generalized insomnia. Insomnia is not generally recognized as a symptom of Chiari but it obviously is and the mechanisim of action is not understood.

Why would health insurance not cover that surgery? That sounds crazy to me.

The insurance company ought to be ashamed for not covering this procedure. God bless this family & little boy.

I am absolutely appalled that insurance would not cover this procedure. I would appeal that decision. I find myself crying over how many patients there are who need medical treatment or even just a medication to treat a condition and because of crappy and shady health insurance policies a lot of people are stuck receiving suboptimal care because of some beurocratic technicality, failure to cover brand name medications, or are only willing to cover a specific type of medication in a treatment regimen. Doctors are required by law to meet a standard of care, health insurance companies should too. My son is autistic. My insurance company considers it an untreatable condition and if I want to have my son get occupational therapy or speech therapy I have to pay out of pocket. We’ve managed to sidestep some of their red tape policies, but it sickens me to see people, especially children, get the shaft so the Insurance company can save a buck.

I am happy that this family was willing and able to have the surgery on their own and I wish you and your son the best of luck and a speedy recovery.

Unbelievable that medical insurance didn’t cover this treatment for this child. What was the insurance companies suggested treatment of a child who has never slept?

I had the surgery a couple of years ago. they removed part of my skull in the back and cut some of the tissue away. i am feeling great. the doctor said i have a 50/50 chance it coiuld come back again.
I no longer have headache of the nauseua. i ferel great.

Insurance covers fat people who wont stop stuffing their faces - but wont help this little boy - pathetic!

Nice story with a sad ending,did parents pay? Did they have insurance,,CHIP? I cant believe insurance would not pay this for this child. When are we as a nation going to put children before PROFIT?

A Chiari malformation is not as rare as the media would imply. We have seen several patients with this condition ( in varying degrees of severity ) in the last 5 years. All were discovered by a MRI brain scan.

The health care system is absolutely outrageous. Unfortunately, it seems for those of us who can actually afford to maintain halfway decent coverage, the insurance company will still find a way to find an exception in every case. What, if anything, gets covered?

My daughter had this condition and surgery in Fl. last July. I thank God for the miracle of the surgical procedure and amazing surgeons that skillfully are able to give back quality life. Florida Hospital’s Neuro Center is awesome!

There is a question that begs asking. Was sleep attempted through the use of legally prescribed sedatives or tranquilizers? If not, why not? I am very sure that short -term use of xanax or phenol-barbitol could have produced sleep in this boy.

Not covered by insurance?! Are you kidding me?! That is preposterous! I hope and pray the surgery is a success and this little boy and his family can have normal lives.

Your insurance company Should be ashamed…………..God bless your son and your family.

Kudos to the doctors and the hospital for treating this boy with probably no guarantee of prompt nor full payment who already have seen drastic cutbacks in reimbursements and increases in regulation (not to mention the threat of lawsuits). This is true American spirit. Shame on the insurance industry awash in billions in reserve.

My 3 year old daughter had this surgery just two weeks ago. It was not considered experimental and covered by insurance. Our provider is a major insurance provider. She has bounced back wonderfully and quite quickly. I am praying that this child will as well!

I don’t believe that the last little comment about the insurance company needed to be mentioned. What revelance does that have to the story? Everyone blames the insurance companies but have you ever thought of blaming the person’s employer?? The employer is the one that chooses what plan their employees will have. I’m sure there is a plan that would have covered this surgery but the employer chose a cheaper plan. It happens all the time. YOU GET WHAT YOU PAY FOR!

i’m glad that the kid is doing good after the sugery.
i want to know what the insurance companies do with the money that comes out of my paycheck every week.

There you have it….Heather’s insurance company covered her daughter’s operation. I, too, have a fantastic health insurance plan. Quit being so quick to blame corporations for everything. If you want to gripe about unfairness let’s talk about movie stars, athlethes, being able to afford top of the line insurance policies because of the out of control money that they earn! CEO’s have at least contributed something.

I have pancreatitis, a tough illness, and I have enough trouble with my insurance. I can’t imagine what this boy and his family have been going through! Why bother having insurance? And we want National health care?!?!? Can you imagine how hard it would be just to go to the doctor for a common cold?!?! Auto-immune diseases run in my family and we can’t help that… Yet since Clinton was in office, it’s been harder and harder to pay those medical bills. We used to have insurance that would cover ANYTHING. And I mean anything. Now, you’re lucky if they will pay for an appendix surgery!!!

Is there any way to donate to help these people out with their financial need after the surgery?

That confuses me. I have Chiari and had that exact same surgery 8 years ago (suboccipital craniectomy, laminectomy). Experimental? Hardly. My surgeon has done hundreds of them! I also couldn’t sleep, and I was in college. I still don’t without sedation. I hope this little guy has a better outcome than I did.

One more thing - 8 years ago, my insurance company DID pay for my $75,000 surgery.

My daughter had corrective surgery over 12 years ago at the age of 18. Her whole childhood was spent to and from doctor offices for the headaches. I don’t remember any insomnia at a young age but even now after the surgery and all these years she still has sleepless or restless nights. 12 years ago no one seemed to know about chiari, or maybe it wasn’t as readily or successfully diagnosed. I’m glad for the children who now have more informed and skilled surgeons. I feel the pain of this family and their fatigue.

Get the name of the insurer out there in Bold Print so everyone knows just how sleezy they are. That poor little boy…I’m so happy for him now!

While many of you may have had surgery for Chiari, the reason the surgery was done was probably NOT to treat insomnia . There could have also been some surgical interventions in this case which were not typical of Chairi malformation surgeries. I have a medically fragile child (6 year old with a brain tumor and cortical dysplasia) and I have to say, even with GREAT insurance there is always a battle. I can’t believe this surgery wasn’t covered, but my assumption here is that it wasn’t covered because surgery to cure insomnia would not fall under the classification of medically necessary, and if the surgery was experiemental (IE not typically done this way) then they would probably have to appeal. Our system is a sad one .. and difficult.. I truly feel for parents when in a situation like this.. not only to have such a major issue but to also have to endure expenses. On a previous article I read that that parents had to give up jobs and such to tend to him.. maybe the add of the insurance not covering it was a way to appeal to the public to offer them assistance in covering the medical expenses for this little child.

I really can’t believe all of you people that think this procedure should have been covered without knowing what type of policy or coverage these people have. Condemning the insurance industry is absolutely ignorant!!!! Most major corporations today are “self-funded”, and at some point, you have to pick and choose what will be covered. I have had medical professionals tell me that I need to take a vacation. Should that be covered also???

It is amazing what doctors can do for children and not charge a dime as long as that child is not an American!! Insurance companies do not want to spend a dime on nearly everything now days, but you better pay on time!
I am so happy for the little boy, but the doctors need help. Unfortunately American children need expensive life saving surgeries as well as children of less fortunate countries. What is wrong with writing the charges off for this child?

As much as I have issues with the insurance industry as I work in the health field as a social worker, I agree with those who indicate that there is too little information given about the insurance coverage for this family. Individuals and employers many times purchase insurance that is quite cheap with upfront knowledge that coverage for many procedures is either very limited or nonexistent believing nothing will ever happen to them. There are other instances where insurance companies’ decisions can be changed with presented evidence. If this insurance company has been given the impression that this is experimental surgery that is excluded when evidence exists that it is not, the family should keep appealing with the evidence. While insurance is expensive and avenues need to be explored to help lower the cost we all need to realize lower costs may well exclude or restrict many treatments and procedures. As others have cited in countries with national healthcare strict restrictions, exclusions, and long waits for treatment are common and at this time would not be tolerated in the USA. Unfortunately, if the insurance company receives documentation of evidence of accepted treatment and does pay for the surgery this will never make a headline. Thank God that this family has found a successful procedure for their precious child. I hope for the best health and life for this little one!

Can we set up a fund to contribute to the family? Most people don’t have $6,000 sitting around, let alone $60,000. Bill G., you make a good point, we don’t know the whole story about the type of insurance. It is unfortunate that it was not covered, but perhaps if people stopped using the ER as a primary care physician, insurance costs might actually start to come down.

I am amazed by the medical community sometimes when statements like “this ia a very rare condition” are made about a condition like Chiari malformation. There is a research institute on Long Island in NY that has done hundreds of these kinds of surgeries with great success. This is NOT a rare condition. The medical community needs to wake up and communicate. This is a very serious life threatening condition that affects hundreds if not thousands of people across the world. Just go to the web site http://www.chairipeople.org and you can read all about it. The people with Chiari being treated in Long Island at the Chiari Institute are being covered by insurance. There is a lady by the name of Juli Carter who runs a non-profit support group for Chiari people. You can contact her at the web site listed above. She has touched the lives of over 200,000 Chiari people around the world. Go there, check it out, we need to spread the word and raise the awareness level of the medical community and the insurance companies, but most importantly those who suffer from this incredibaly debilitating condition. There is hope, there is help.

This is not experimental surgery in the United States. This is not the entire story… I, also, am troubled about the manipulativeness of the plug for Universal Health Care. The person above who made the point about Canadian and European health care not covering anything and having outrageous waits, is too true. This is what Americans will have if we get Universal Health Care…

I wonder if the insurance company qualified this under “pre-existing condition” and that’s why they chose not to cover it. In any event, the cost of this surgery is irrelevant to the amount of joy and satisfaction the parents and child must be feeling right about now. Hopefully someone or a group of people will step in to help pay for these costs if the insurance company does not change their mind. The first step into taking care of that bill was to make this story public.

Thank God for doctors that care to try new things! My heart goes out to this family, and all of the doctors and staff that helped this little miracle boy!

Not covered by Insurance!! Figures, like every other monopolized industry-pick and choose-got to have lights- 1 company-got to have water…1 company- got to have phone..1 company.. got to have insurance ..or you pay

The illegal Aliens get free medical care but this boy and his family were refused coverage or help. America has no justice for all.

Illegal Aliens get free medical care and Americans are left dangling. America has no justice for all.

WELL IF THE FAMILY DIDN’T HAVE INSURANCE THAT COVERS THE SURGERY THEN THATS NOT THE INSURERS FAULT THE FAMILY SHOULD HAVE GOTTEN INSURANCE ON THIS SURGERY BEFORE IT WAS PERFORMED……….I PRAY THAT EVERYTHING TURNS OUT OK WITH THIS LITTLE GUY!!!!!!!!

Its ashamed that corporate thought processes (all in the name of saving or even better stealing money form well payed plans) control the fate of people like this family and lil boy daily hanging in the balance. However they grant rich people breast implants and tummy tucks daily because it impairs the self esteem. I bet you the worm that call them selves human that work at the insurance company sleep good at night and probably get free meds to help them do so. IF they would grow a conscience the wouldn’t need there pills. This isnt the America I joined and served 20 plus years for where did we loose that one?
Semper Fi
Gunny

Has an account been set-up for the boy’s bill? Can the parents Handel the expense on their own?

I saw this family on Good Morning America last Saturday. The little boy was extremely irritable, agitated. He was hitting his mother out of frustration. It was all due to lack of sleep. He had already had the surgery, but had not yet been to sleep. I’m very glad to read today that he and his exhausted family have slept.

They said that due to a job change, their insurance company would not cover a pre-existing condition.

Insurance = legalized extortion. What a bunch of crooks! Pay for it, you cowardly fat cats!

There is absolutely nothing experimental about posterior fossa decompression surgery (removal of the skull- which typically includes surgical laminectomy of the upper vertebra).
If the insurance company failed to pay, it was for some other reason. Posterior Fossa Decompression is the gold standard for symptomatic Chiari Malformation.

This story is poorly written and lacks even an iota of research. This was only put to print for the lame wow-factor of 3 year sleep deprivation (which is clinically impossible).

Shame on FoxNews for not doing their homework when they re-reported this non-story.

How about, instead of bashing the Insurance companies, we set up some fund for this family to help cover the costs, I’ll put the first $100.00 dollars down.

I’m so happy for the boy and his family, insurance companies are pathetic, and even more pathetic than insurance companies is the media and the twists and turns and manipulations that splash all over place.

I have had surgery for Chiari as has many people, please google Chiari Malformation and you will see many support groups. The World Chiari Association is great and you will find much info that will amaze you that this is Not that rare. I have a niece who had the surgery also.
CK

I forgot to add that my insurance paid for the surgery and most insurance companies do pay.
If your insurance did not pay, find out why.

That’s some great news! What a shame that insurance doesn’t cover this!!! Isn’t that what insurance is for? We really need some insurance and malpractice reform in this country. NOT nationalized health care… if we had this, the kid might be 23 by the time he waited in line to get this done.

If the job change is true, the parents should have forseen the pre-existing circumstance and paid for COBRA, which allows you to pay for heath care between jobs etc so you do get ‘pre exisiting condition’ restrictions. Although I think pre existing conditions should be banned from health care because it is unjust.

I also feel although our health system is flawed, Americans get the best health care in the world. In socialized countries, you have to wait months for treatment, if you get it at all. Older people are discriminated against due to their age. In America at least, health care is not denied due to age.

May God Bless the three of you! I became frustrated because my son didn’t sleep much the first 6 weeks. Luckily, his doctor decided to begin cereal, as he weighed nearly 10 pounds at birth. I hope that all 3 of you, live happily ever after. Diane

My son has a Chiari, it is not as “rare” as they are saying. My understanding from what they said at Stanford, is more and more of these are being found. Due to the use of MRI scanners, they can find them more often.
When we found out about it it was due to my son haveing a headache for more then 20 days, everytime I would bring him to the DR. they would just tell me he had a headache nothing they could do. The third time I brought him to the hospital, they filled him up with pain killers, and they tried to send us home. I screamed I would not leave until they found out what was wrong with him. (he had open heart surgery @ 5) They finally did a MRI and found the malformation. He was sent to Stanford and there we got told they WOULD not do anything UNTIL it became TOO large, and caused “more problems”. They said he had .5cm before it “impinged”, into the bone. The insurance would not cover it until that happened.
Once it does impinge the wonderful things he gets to look forward too, problems breathing, lisping his words, and more headaches. Oh yeah and alot more vomiting. As for the sleeping well he gets maybe 3-5 hours a night now.

Does it make sense to me? Not really I understand them not wanting to cut into a persons head but do I want to see my son that sick? NO. Now he is 18 do you know what he does? fakes it he does not want anyone to know he is sick so he acts like nothing is wrong. He feels like the Dr.s’ do not listen to him so why bother going anymore.
Chiari is not something to mess with but they do not want to do anything about it. Until it can be TO LATE.

It is very unfortunate that this surgery was not covered by medical insurance. Part of me blames the parents for this. If they were smart they would claim to be illegal immigrants from Mexico and then they would not have to pay.

WHY wouldn’t this surgery be covered by insurance?

Since this was the first time for an experimental process , how did the medics come up with a very precise $ 60,000.00 price tag on it ??

It is notable the insurance company would not cover a catastrophic incident. What are people buying insurance for if not to cover catastrophic health issues. Those are the ones that bankrupt you.

This is TYRANNY at it worst. It’s time for rebellion folks. Plain and simple. It may not be King George III sitting at the throne but it is certainly a CEO/VP hiding behind myriads of nameless approval/denial procedures written for the specific purpose of delaying most payouts until the customers give up because they don’t have the resources to do battle with these corporate giants who have exercised every available means to avail themselves of any legal and moral responsibility what-so-ever. Not to mention dealing with their unwitting but complicit employees rewarded for delaying obligatory payouts is simply nerve-wracking. I’m not patient enough to think that they will burn in hell. I would rather settle the issues personally. And if one of the insurance company head honchos got roughed up a bit, ear pulled off, eye gouged out, maimed, etc. so be it. As long as they were not reimbursed for their medical expenses. Now wouldn’t that be ironic.

This story seems sensationalized. Chiari malformation is common occurring at least 1 per 1000 births. The surgery is not experimental but performed numerous times per year at the hospital where I work. The child has not been sleepless for 3 years–the world record for persistent wakefulness is 11 days. Insurance companies routinely cover the surgery for symptomatic individuals. As a medical professional reading between the lines, I would guess that the child had some insomnia but certainly had periods of daily sleep. The insurance dispute may have arisen if the child was not experiencing hydrocephalus, seizures, hypertension or other more serious and verifiable side effects from the chiari. The vast majority of patients I see with chiari have no symptoms and is found on mri/ct when screening for a traumatic brain injury. True, persistent insomnia would be a possible reason for surgery and it could easily be verified by a sleep study.

I would have preferred information about where I can donate money to help the family with the costs, rather than simply hear that the procedure wasn’t covered by insurance.

My wife and I saw this family on Good Morning America last week and it broke my heart to witness the frustration this little tot was experiencing from lack of sleep while his parents were trying to accomodate the interview.

I’m a 48-year-old father of three, nearly grown, healthy kids, and watching what this family has had to endure made me cry. I’ve got tears again after reading this article, but this time, they are tears of joy, in addition to the compassion.

Please Fox, follow up with an address where we can help this family defray their cost if they are in need of financial assistance.

I know what you and your family is going through. My little boy had this surgery 4 years ago in San Antonio, Texas and it saved his life. The process to even find out what was wrong with him was pure Hell. It took us 6 months for him to be diagnosed properly and that was only after being held in a Children’s Hospital for 4 weeks for doctors from every discipline to try to figure out what was wrong. He is now a happy, healthy, normal 6 year old! God works miracles and my son is proof! I wish you all well in this little one’s recovery.

When was the opperation? The reporter failed to indicate how long the boy had been awake.

I have Chiari Malformation as well. This little boy is one of the “fortunate few” that get this diagnosis at such an early age. The average age for diagnosis is 29 years old. As far as giving a child barbituates to sleep especially with this malformation this is insane. There have been no studies done but most deaths related to Chiari are connected to use of sleep meds. This is due to the part of the brain under pressure is also in control of vital stats. including sleep and even body temp regulation.
I don’t believe this is a plug for National Health Coverage (but it does make sense). Many Chiarian sufferers are working in Congress as speak to get a National Day of Recognition (We need it tentative Sept. 20, 2008 “Chiari Walk Across America). There are some studies show as many as 1 in 10,000 suffer from this “rare” condition but others say as many as 1 in 1,000 (300,000 US alone). This wide difference is because there is no consenses in the medical community as to what really qualifies as Chiari. Research funding falls very short and most neurologist/surgeons are so undereducated in this area they consider this “experimental” this may be where this is coming from.

Let’s just keep this little boy in our thoughts/prayers.

If anyone would like more info e-mail me grimm.kelly@yahoo.com and I will send it to you (more than you would probably like

Kelly North Dakota

I wish there was a way for people to donate to help his family cover the expenses.

Sleep at last! Happy to hear it!. The writer neglected to include the detail that the parents had changed insurers, and the new insurer had no obligation to cover a PRE EXISTING condition. If insurers had to cover pre existing conditions, no one would buy coverage until they needed a pay out.

In any case, as a mom, I would pay 60K for sleep, after 3 cranky years.

I want to know why something like this would not be covered by insurance. We pay SO much into the insurance companies. I have a 2 1/2 yr old grandson - I can’t imagine him not being able to sleep. This seems like such a medical necessity for the child’s life. Insurance or not, I’m so happy they could do something for this little guy.

My son was also diagnosed with chiari malformation and had surgery at UTMB in Galveston, TX. The surgery sounds very similar to my son’s surgery, which while rare, is not “experimental.” It was covered by our insurance. I am shocked to find out that this poor family has been denied benefits. My son was also a poor sleeper, and didn’t sleep through the night until he was 3. He was diagnosed at age 5.

I hope that this little boy will have some normacy in his lief… it’s ad about the famlies lak of insurance coverage… but here is the sad part….had this little boy been an illegal his hospital bill would have been nonexisting…if an illegal immigrant was to come here to American pregnant and had this child here, first the child would automaticalyy become and American citizen and the hospital cost would have also been paid by the state…$o dollars from the illegal immigrant, regardless of the procedure….Yet again an American citzen is left with mounting bills to pay…..this system needs to be revamp…

Of course, at fist glance, the fact that the surgery is not cover by insurance is tragic; however, as others have pointed out there is some imbalance in the reporting. Insurances will typically only cover well tested procedures with favorable outcomes. There is a high level of uncertainty with the outcome; and though we all hope that this works well and blesses the life of this little boy and his family, there are many experimental procedures that we DON’T hear about that are borderline reckless or ineffectual and if they were to be covered by insurance our costs would dramatically increase.

Our system is not perfect and there is certainly a need to rethink how our medical/insurance/legal system works.

I had always heard that if you didn’t sleep you would go insane. I even saw a show on the History Channel about the human body that said so. Can anyone explain how he kept his sanity?

My 15 year old son just had his 2nd surgery in six months for Chiari. The others are right. This surgery is not experimental, but there is not 100% agreement in the medical community re: what specific things need to be done in the surgery (some just remove bone, some remove bone and small portion of covering of brain, etc.)

For the record, our insurance covered both surgeries.

Perhaps the reason the insurance company denied the claim is that they are calling this an “experimental surgery”. The surgery described has been used for years to correct Arnold Chiari malformation and is proven to work. My daughter had decompression surgery 3 years ago and it was completely covered by her insurance.

i would love to never sleep, bullfrogs never sleep. i would stay up all night and read fox news.

Why would insurance not pay for this? That is completely wrong!

The story is a very profound success story of a child whom without medical attention would not have a nomal quality of life — with that said, Shame on the the insurance companies for their stance of not covering this type of medical issue — would they feel the same way if it was their child that was suffering!

anonymous

My son had surgery when he was 3 for a type 1 Chiari malformation. That was 10 years ago. The surgery was covered by insurance back then and not considered experimental. He is doing great. He never had any problems with sleep. His was caught when the noticed him having Nystagmus(rapid eye movement). Our doctor told us that the chances of it recurring were very slim. He has had a CAT scan done and everything looks great. While an MRI is the best way to monitor this condition, he has a pacemaker and MRI’s can’t be done. I feel very comfortable with what the doctor told us since he is very well known for doing this type of surgery. Many people have brought their