We Have Been Approved!

September 29, 2009

Anthem Blue Cross

Preauthorization Department

Fax: 1-888-656-5721

RE: Benjamin Garrett

Dear Blue Cross Anthem Preauthorization Department:

I am writing to you in regards to a request submitted by Dr. Charles Mace and Dr. Douglas McNeal for Benjamin Garrett to receive services at St. John’s Hospital with Dr. Sami Khoshyomn. Anthem Blue Cross has denied coverage because St. John’s Hospital is out of my HMO network.

Dr. Mace performed Benjamin’s first brain surgery at Cox Hospital when Ben was fourteen weeks old. However, Benjamin’s skull has closed again and he requires an additional surgery. Dr. Mace is not a pediatric neurosurgeon, and because second surgeries are so uncommon, we have sought treatment with a pediatric neurosurgeon.

Dr. Khoshyomn is the only pediatric neurosurgeon in the region. Over the past two and a half years, Dr. Khoshyomn has performed over forty surgeries in children who also have craniosynostosis, Benjamin’s condition. His method involves inserting absorbable plates and screws to keep the bones apart, followed by three to sixth months in a molding helmet. Dr. Khoshyomn has had such positive results with this method, that no children have required a second surgery. Cox does not have a pediatric neurosurgeon on staff.

Benjamin needs this surgery soon. If we wait beyond his first year of life, his bones will not be able to regenerate and fill the void created by the needed surgery and he will need artificial bone grafts implanted later, as a young child. This surgery is necessary for Benjamin’s skull to open to provide adequate brain growth, in order to prevent the possibility of seizures, blindness, and major developmental delays.

Additionally, Benjamin is facing living with a physical deformity and I truly believe it is too much to ask of him that he simply live his life with this deformity and its complications when there is a proven medical procedure available to correct it.

For these reasons, we are seeking Blue Cross Anthem to make an exception in Benjamin’s coverage, to include surgery performed by Dr. Khoshyamn and all of the associated hospital and medical expenses through St. John’s Hospital in Springfield, Missouri. Should you need any additional information, feel free to contact us at XXX-XXX-XXXX. Thank you for your time and assistance in this matter.

Sincerely,

Josh and Lara Garrett

Enclosures:

A record of phone conversations between Mr. and Mrs. Garrett and Blue Cross Anthem representatives (5 pages).

A patient story of Dr. Khoshyomn's that explains the procedure he has also proposed for Benjamin. This article also covers the possible complications of Benjamin's condition if left untreated.

Copies of St. John's Pediactric Neurosurgery website and Dr. Khoshyomn's credentials.

A news story about Dr. Khoshyomn and Dr. Shah's method of craniosynostosis surgery.

Referral letters from Dr. McNeal, Ben's pediatrician, and Dr. Mace, Ben's original surgeon.

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That letter, those documents, and an extensive phone conversation between Dr. Sami Khoshyomn and Blue Cross Anthem were enough to persuade the insurance company to cover Benjamin's surgery and provide us with in-network level coverage. They are still denying coverage of the helmet due to its "experimental" nature, but in the big scheme of things, that's a minor issue. We are so relieved to have won our appeal and, as Josh said earlier today, now we just have to get through brain surgery. Our next appointment with the surgeon is scheduled for October 12th, and we will be setting a surgery date at that time.

Making Progress

The title is deceiving, but I feel that we are at least a tiny bit closer to feeling ok about Ben's next surgery. Today we met with Dr. Sami Khoshyomn at St. John's. He made us feel so incredibly comfortable with his ability and methods. His specialty is craniosynostosis, he is the only pediatric neurosurgeon in the region, and he has never had to complete a do-over surgery, out of over forty similar operations during the past three years. His method involves using plates and screws that dissolve after a year of holding the bones in place. This is in conjunction with a molding helmet that Ben will wear for 3-6 months.

This video shows Dr. Sami (as he is known), discussing the procedure. Oddly enough, this video aired on the 10:00 news, the same day and time that Ben was born.

I still feel we have an uphill battle to climb, trying to get our insurance appeals process completed in order to allow for Benjamin's medical expenses to be covered through my HMO. Dr. Sami said he will help us with that process in any way that he can, but right now we are waiting to hear from Anthem Blue Cross. If we are initially denied coverage, then we are prepared at this point to get legal representation involved.

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For a little stress relief, mom, Ben, and I went to the zoo yesterday and the picture above is just after Ben stuck his finger in the goat's nostril. Benjamin also had his first experience with hand sanitizer yesterday.

The Insurance Nightmare Continues

From the last post until now, I have probably made 70 phone calls related to problems with our insurance company. After hearing we were denied coverage at Johns Hopkins, our surgeon referred us to a surgeon at Barnes Children's Hospital in St. Louis. I called to once again, make sure we would have insurance coverage at this appointment and was confirmed that our insurance was accepted at Barnes Children's. We made our appointment and I prepared to miss school to go. I had all of Ben's paperwork transferred from the surgeon and pediatrician's office.

Within hours of finishing that, we were called saying we would not receive HMO coverage at that appointment either. We could receive out of network benefits and would have to pay the first $1000 out of pocket, in addition to a large percentage of Ben's care after that. I cancelled that appointment, then asked the insurance company where could we go to get a second opinion about Ben's head.

Blue Cross Anthem said we could go either to Cardinal Glennon in St. Louis or the Cleveland Clinic Neurological Institute. I hadn't heard of Cardinal Glennon prior to this, but we were given the name of a specific surgeon we were told by the insurance company to see, so we made an appointment with his office earlier this week.

This morning we had our appointment at Cardinal Glennon. From first impressions alone, the facilities at Cox South in Springfield are so much nicer. When we checked in, we had to fill out paperwork and time-stamp it, then put it in a basket. After that, we were called up to one counter where we were told we had no appointment on record and they didn't know who we were. I explained our situation and they asked who I talked to. I didn't write down the appointment desk lady who I called several days ago, and I became worried about this experience.

Quite a bit later, we were told there was a note they found somewhere about our visit, but they had us down as a cleft palate case. Quite a bit later, we were escorted to another desk where we turned in insurance paperwork and while moving from station to station, the staff seemed generally surprised we would drive all that way to go to Cardinal Glennon. We silently concurred.

Ben was weighed and measured (16 lbs and 25 1/2 inches) and then we were escorted to another room. After about a half an hour later, a nurse peaked in, then walked off saying "Oh, I forgot about..." Over two hours after we arrived, we saw the surgeon and another medical staff person that was not introduced.

Dr. Carstens is a pediatric plastic surgeon who agreed that Ben needed surgery, but proposed a major cranial vault remodeling with the front of Ben's skull. This included removing, sculpting, and repositioning his forehead. We are incredibly uncomfortable with people rearranging Ben's face. The back of our head and opening the skull for adequate brain development are our major concerns. I brought this up with the surgeon, but this was dismissed because in his opinion, the appearance of the face is the most important. He also said Ben had a "toaster-shaped" head, which annoyed me.

After this overall negative experience, I called the insurance company with our list of reasons why Cardinal Glennon is not a good fit for our situation. I called the surgeon and he agreed.

He and our pediatrician are now going to write referral letters for us to see Dr. Sami Khoshyomn at St. Johns. He is the only pediatric neurosurgeon in Southwest Missouri. Dr. Mace (our first surgeon) is a neurosurgeon with pediatric experience, but not strictly a pediatric specialist. Dr. Sami's children attend the school where I teach, and we will have a consultation with him on Monday.

St. Johns is not within our network, but we are going to try desperately to appeal to the insurance company to get HMO coverage with this surgeon to avoid the incredible travel expenses associated with traveling to Cleveland. We should find out tomorrow if our appeal is approved or denied. Based on that decision, we will either start this process again in an effort to go to Barnes Children's Hospital in St. Louis, or we may be flying to Cleveland as soon as this coming Wednesday.

A Day of Bad News

This morning, my HMO (Blue Cross Anthem) called and said they were denying Benjamin's medical coverage at Johns Hopkins! I was pretty devastated, but called and cancelled our appointments and travel arrangements.

I asked about our other options, and Josh spoke to our surgeon here in Springfield. He referred us to Dr. Park at St. Louis Children's and we made our appointment there. I cancelled my substitutes for next week and prepared for us to go to St. Louis.

By lunch, Blue Cross called again and denied our coverage there too! So we asked, where in the United States could we go that would be covered by my HMO. They said we can only go to Cox South in Springfield, where we had the first surgery. I emphasized why we need a second opinion in our case, and even our surgeon is in favor of a second opinion.

We were granted "special" permission to go to Cleveland Clinic Neurological Institute to get a second opinion and have our HMO coverage. I asked for this statement in writing before I go through everything to arrange a visit and travel accommodations. They said they would fax it to my pediatrician along with the referral paperwork he needed to fill out.

After school today, I stopped by the pediatrician's office and they hadn't received anything. My pediatrician doesn't even know why they would want to talk to him, because he can't really give his assessment on our situation from a neurosurgery perspective, and they should really be talking to our neurosurgeon instead. Either way, the pediatrician offered to call in the morning, try to help us get an appointment, and explain our situation as best he could, but they will most likely want to talk to our surgeon as well.

That's all fine with me. I just want this to be over with! I called the insurance company back and said they would re-fax the letter to the pediatrician's office as well as to my work tomorrow morning. After that, and after we have an appointment, then I will start with the travel arrangements.

My husband called Cleveland this afternoon to talk about what was going on, and they were very hesitant to schedule a consultation, pre-op and surgery date in one visit, so we will most likely be traveling there two to three times over the next couple of months.

I just don't know what to think now. My pediatrician said that if we don't have a letter stating Anthem Blue Cross will cover the Cleveland Clinic Neurological Institute by tomorrow at 5:00, then we should probably get a lawyer.

I feel like I'm on such a roller coaster right now. We've gone from leaving for Baltimore on Saturday and having a surgery date in two weeks, to having no idea if and when Ben will even have a surgery.

I know that everyone I know has heard me repeat this numerous times over the past week, but we are the reason health care needs to be reformed. No matter your opinion of President Obama, something needs to change with our system. An infant shouldn't be denied the best possible care, especially when it is involving brain surgery. This is all so terribly unfair, and could be easily prevented with the right legislation.

This is such a big blow. It is making it really hard to be a good mom, wife, teacher with all of this rattling around in my head. I hope I have really positive news to post soon, and know a little more about what's going on.

Ben is Having Another Surgery

Some of you might have heard some slight mention of this possibility, but unfortunately Ben is having another surgery. The first surgery went as planned, but the bone grew back and fused again, much quicker than what was expected. We knew there was a very slight chance of his needing another surgery. We had sought second, third, and fourth opinions on Ben's condition, and have decided to travel to Baltimore, MD to Johns Hopkins Hospital for Ben's surgery. They are one of the top pediatric neurosurgery teams in the US, and we feel good with our decision to travel so far for Ben's treatment. Most of the teams in the midwest had not performed a second operation of this kind on an infant under the age of one.

Our pre-op appointment is on September 30th, and the surgery date is scheduled for October 7th. We will be in Baltimore from September 29th through October 14th.

During the week between the pre-op appointment and the surgery, we plan on seeing Washington D.C. (40 miles west of Baltimore) for a few days. It will be our first family "vacation" - granted under less than ideal circumstances, but we might as well make the best of it. We will also have to return to Baltimore more over the coming year. I will be sure to let everyone know how things go and anything else I find out between now and then. Thank you all for your love and support.

Maybe Not a Helmet?

Ben's helmet fitting was earlier today, and after seeing Ben, the orthotics place said they won't give him a helmet. The clinic said that typically, when a baby has the same head condition but undergoes the endoscopic methhod of surgery, they will immediately be fitted with a helmet. We had considered that type of surgery, but thought a worse surgery was worth not having to deal with the helmet. I now regret not making that decision before, because I believe we would have had better results.

The orthotics place said they had never heard of giving a helmet to a child with already fused plates, and three months out of surgery, and with the type of surgery Ben had. They said that without any CT scans, they cannot issue a helmet because they cannot determine if the plates have re-fused. So they refused providing a helmet- on the premise that giving him a helmet could cause major brain damage and restrict further head and brain growth all together. At the end of the appointment, they said they are going to bring our case before a national panel via conference call, and see if there are any other cases nationally, similar to ours.

From this point, I am becoming increasingly concerned about our options either causing Ben to need another surgery down the road, Ben forever having a severely misshapen head, or Ben having brain damage from a helmet that restricts brain growth. We will hopefully hear back from the orthotics place next week sometime, but they indicated we will probably hear that they will not provide a helmet in this case.

I emailed a pediatric neurosurgeon in Columbia, MO and he (Dr. Muzzafar) said it seems like Ben's procedure wasn't done well - not that we need a helmet. He actually said a helmet wouldn't do anything, and waiting won't help anything either. He said the only option is another surgery and it needs to happen as soon as possible.

So now I feel like I am at such a loss. I am considering going to Johns Hopkins or Mayo, because they are two of the highest rated pediatric neurosurgery teams. I feel like all over the midwest, everyone I have contacted has told us something different.

Springfield - wait and see
St. Louis - helmet
Kansas City - no response
Little Rock - no response
Dallas - surgery
Columbia - surgery

Still waiting to hear from another surgeon in Springfield, but I just feel like we need to get out of the area to go to one of the best hospital possible for our situation.

This is all so frustrating and I am really obsessing about researching hospitals, surgical teams, and research about our situation.

I know that overall, his head shape isn't terrible now. However, I fear that if it doesn't change much, or even gets worse, that he will look dramatically different from others by the time he is school-aged. I am prepared to handle that, but I hate to think we had a way to prevent any problems like that and we chose not to.

Labor Day

A photo story of Ben on Labor Day, now able to sit all by himself.

Ben Is Crawling!

Ben is crawling. Well, scoot - crawl - fall - ing. He's definitely mobile, however. Everything in the room is fair game at this point, so we are going to need to seriously think about how baby-proof our living room is. He hasn't ventured beyond it yet, and I can't even imagine what it will be like when he can get all over the house. He's still slow enough we can catch him before he gets into too many cords or DVDs or books. We have a large wooden coffee table that might prove a problem, and then the primary feature of the living room - the wall-sized rock fireplace, is a hazard all itself. I really don't have any great baby-proofing ideas as of yet. I only look around and see danger. I have friends who swear by baby corrals, and we still haven't used the bottom half of the Pack N Play as a playpen just yet. When Josh is caring for Ben during the week, he needs to be able to leave the room every now and then - at least to go to the bathroom, and with Ben's mobility, it will be interesting to see how this week goes.

We still have not heard from the orthotics place regarding Ben's helmet appointment. I am still dreading when he has the helmet, but I know it's for the best. I emailed Dr. Fearon from Dallas Children's Hospital and he agreed that Ben needs a helmet as soon as possible. I feel much more confident, now that we've received second and third opinions on the matter, and I'm sure we will be even more sure of our decision after it is all over with.

Contacting St. Louis Children's Hospital

As of our last meeting with Ben's surgeon Dr. Mace, we have felt uncertain about Ben's future head shape. The large opening that was cut during Ben's surgery has already closed, and the doctor has little hope in his head shape changing much from what it looks like right now. I had mentioned helmet therapy or another surgery, asking if that would be a possibility. Dr. Mace wanted to wait another eight weeks to determine what should happen next. Josh and I weren't comfortable with waiting that long, so I made some new connections on a craniosynostosis message board, Cranio Kids. Through that website I was referred to Dr. Matthew Smyth. I emailed Dr. Smyth and have posted our correspondence below.

Dear Dr. Smyth,

I found your name on a message board discussing craniosynostosis. My son was diagnosed when he was two days old with a completely fused sagittal suture. At 12 weeks old, he underwent open sagittal correction with Dr. Charles Mace, at Cox hospital in Springfield. We are now 14 weeks after surgery, and Ben no longer has any soft areas that can be felt. His frontal fontanel is fine and wasn't a problem before either. We met with Dr. Mace last week and he expressed some concern about Ben's head closing early, and said we probably won't see a great deal of difference in head shape from this point on. He also said anything further would purely be cosmetic and he wants to see him again in eight weeks to see if anything has changed.

I am writing because I would like a second opinion. We didn't have any problems with Dr. Mace or Cox hospital for the first surgery, but I'm not sure if we are ok with his head staying as narrow as it is right now indefinitely. I think as a baby he looks fine, but his head is so elongated, I can't imagine him ever being able to wear a bike helmet, or play t-ball or any of the other normal kid things that might require something on his head. I also worry about his teenage years with the protrusion that he still has on the back of his head.

Prior to surgery, his head was very severe. His forehead protruded and the back was almost like a football point. He also had strong indentions at his temples.

I am sure it is difficult to provide an assessment without us visiting your office, but I have included links below that include before and very recent after pictures. My main questions are: Is helmet therapy an option at this point? Should we continue with the "wait and see" approach? Should we have more scanning done? (We haven't done any since he was 2 days old.) Is it really just cosmetic at this point, or could too much pressure be put on his developing brain?

Other medical related things: He contracted staph infection on his incision with the first surgery and was on 5 weeks of antibiotics but is fine now. He is tiny - 10th percentile for height and weight, but has met all of his developmental milestones at an average rate. He has horrible reflux and has been on Zantac since he was two weeks old. Other than that, he's a pretty healthy and happy baby.

Here are some before pictures (scroll to the bottom, I made a website to explain the whole deal to my friends and family):

http://ozarkmountainblog.blogspot.com/2009/03/questions-about-bens-craniosynostosis.html

Here are some after pictures I took last night. I honestly believe it's worse in person, but it was hard to get the right angles to show it. I think Image 3605 really shows the flat spot and the knob, as I affectionately call it.

http://www.flickr.com/photos/41276639@N06/sets/72157622166728816/

Thank you so much for taking the time to read all of this. I genuinely appreciate it. The person I spoke with on the phone in your office was also so incredibly friendly and empathetic.

Thank you again.
Sincerely,

Lara Garrett

Dear Mrs. Garrett:

I have reviewed your email and the images, and also discussed Benjamin's case with my colleague in pediatric craniofacial plastic surgery (Dr. Alex Kane, with whom I perform craniosynostosis surgery at our center at St. Louis Children's Hospital). It appears that Dr. Mace performed an open strip craniectomy. At our center, we perform a similar operation, but we use an endoscope (small camera on a stick) to make the incisions smaller, and perform more extensive bone removal with lateral releases of bone in addition to the removal of the fused sagittal suture. We then use a custom molding helmet until age 12 months or so. There are multiple approaches to sagittal craniosynostosis, and they vary from center to center.

Given Benjamin's current situation, I might consider a molding helmet. It may help with rounding the head shape somewhat over the next few months. If you choose to go with a helmet, then the sooner the better because he is still in a period of rapid head growth with more effectiveness of the helmet.

If the cosmetic result is sub-optimal after a course of helmeting, repeat surgery could be considered, but usually we don't end up re-operating in these situations unless the appearance is severe/unacceptable. Given the subjectivity, that can be a tough call, obviously.

Dr. Kane and I would be happy to meet with you and Benjamin so we can better evaluate him and advise you. We would not jump to a scan at this point, rather we'd review what scans are already done, the operative report from Dr. Mace, and his current clinical exam.

Please let me or my office know if we can be of further help.

best regards,

Matthew D. Smyth

His response was so warm and friendly, that I would have really liked to have worked with him. However, because he is out of network and I have a horrible HMO, it isn't the most realistic option. We took this information and asked Dr. Mace again about helmet therapy, and have been referred to an orthotics clinic to have Ben fitted for a helmet.

In the picture on the top of the page Ben is in another one of my brother's outfits from when he was a baby.