Friday, May 14, 2010

Another Road Block.......

Huntar Gustafson was born on October 18, 2008 in the Upper Peninsula of Michigan. He was born with a left hip displacement which was treated with a harness for the first seven months of his life. After the completion of this treatment, a bump was found on his lower back. After further examination and a multitude of medical tests, Huntar was diagnosed with an extremely rare spinal disorder. Due to the rarety of the situation, Huntar was referred to the Shriner's Hospital in Minnesota.

Huntar's spine is separated into two pieces and his spinal cord is tethered. The break in his spine is in the lower section, and this condition has only be documented two other times in the United States, nine times in the world.

Huntar has been travelling to Minnesota to meet with doctors at the Shriner's Hospital and at the University of Minnesota's Children's Hospital, Fairview. Unfortunately, due to the limitations of the health care insurance, the surgery he requires will not be covered merely because Huntar resides in the State of Michigan, and the only surgeon who has previously performed this surgery is in Minnesota. The insurance is only willing to cover 17% of the $150,000 if the surgery is performed out of state. If a doctor can be found in the state of Michigan, they will cover 80% of the costs. Unfortunately, a payment plan is not an option with the University of Minnesota, and we do not have the financial resources to cover the expenses. It is unclear that any of the facilities in Michigan have the necessary equipment or that any of the doctors in the state are willing or have the expertise available to complete the surgery.

What has been most frustrating is the fact that the state previously gave pre-authorization for his treatment in Minnesota, and have now reduced that authorization to a minimal percentage, only a few days prior to the scheduled surgery. Huntar is a growing boy, and it is estimated that the surgery must take place prior to his growth of approximately one more inch, or the possibility of paralysis may set in. Time is a major factor, and we are beginning to run out of options.


  1. Barb, I pray that a miracle will happen to help Huntar's situation! I believe that he will recieve the needed surgeries, and I will do all I can by passing this info on to others so that the right help will be found! Sending you and Huntar my love! God Bless!

  2. Gustufson family- I am a physician in Grand Rapids, MI and was forwarded this site by a friend. I spoke with a Pediatric neurosurgeon in Grand Rapids, Michigan willing to review Huntar's case. He would need a copy of the complete MRI from Minnesota and is willing to look at it before you would have to travel to Grand Rapids to see him. PLease leave contact information so I can speak with you about this if you are interested. I wish you the best of luck and hope things work out.

  3. My name is Steve and I live in Washington State. My mom lives in the U.P and directed me to your newspaper article. I am 48 years old and have a form of spina bifida that included a tethered spinal cord. I had surgery in 1996 to un-tether my cord and to remove a mass of fatty tissue on my spinal cord. My case is not rare, but unusual in that I had my surgery when I was 34 years old rather than as an infant. My surgery was performed at the University of Washington by a Neurosurgeon from Seattle Children's Hospital. There is a wealth of information available at which is a helpful website dedicated to spina bifida. My initial thought is that a Children's Hospital in Detroit must have Neurosurgeon's experienced with tethered cords and possibly the U of M or MSU may have medical schools that could perform the surgery and alleviate your insurance roadblocks. I would also caution you on dealing with just 1 neurosurgeon...I saw 4 different surgeons and got 4 different opinions as to the severity and urgency of my case. As with any disease, there are different hospitals with different specialties and I can assure you that there are numerous hospitals in the U.S. with the experience in handling your case if you can overcome your insurance issues. Perhaps one thing that may be comforting to you is that in my case, I did not experience significant pain as one of my symptoms. I do have some life-long issues that I would be happy to discuss with you in an email format if you would like. I understand the fear you must be facing and wish you the best of luck. I will check your website in a couple of days and periodically thereafter to see if you have made any progress. Best of Luck to Huntar - from his tethered cord friend in Washington!!!

  4. barb you need a lawyer, to back up your rights for hunter, check out legal services, you have the right to an appeal process on medical if you don;t agree...

  5. Thank you all for taking the time to read this. And for all of your support and thoughts.