Lessons

Awhile back, I posted about the fight that we'd had with the PA at Nicholas's neurosurgeon to get a prescription for a cranial band. And that we'd seen such success with it.

When Mike had had his appointment with the PA, he had been told that because of the severity of Nicholas's hydrocephalus, the best thing we could do for him as parents was to take him home and make him as comfortable as possible for however long he would have. We had already seen progress from him at that point and refused to believe that we had reached the end of the progress. While we weren't going to fight that fight with the neurosurgeon's PA, we didn't plan on not moving forward with the therapies that he was responding so well to.

Last week, Nicholas had his first follow up appointment at the neurosurgeon's office since that fight. And he was scheduled to see the PA that had originally denied us.

Mike brought Nicholas (and Emily!) to the appointment. When the PA walked into the office, Mike had Nicholas sitting up on the table - independently. The PA walked in and was shocked the Nicholas was sitting up on his own and mentioned it. Mike nodded and waited for the measurements to begin. Nicholas's asymmetry was at 4 mm. The PA re-measured and looked at Mike. He was in awe. He said, "It worked. It actually worked." He couldn't believe it.

During the course of the appointment, Mike found out that the PA had truly believed that Nicholas would be severely disabled and that we would likely not see much development out of him. As it turns out, the majority of the fluid from the ventricles was pooled in the front of his brain during gestation and had caused damage to the frontal lobes. The frontal lobes are primarily responsible for gross motor skills (such as sitting, crawling, walking), as well as the swallow function. It makes perfect sense, then, that Nicholas has difficulty swallowing without aspirating and also that he is delayed with his gross motor function. But he's catching up. He probably won't walk before he's 2, but he very well may crawl. He's sitting up, completely unassisted, for 30 minutes to an hour now, where previously we were lucky if he sat unassisted for more than 5 minutes.

The PA told Mike that he was wrong. And that he is amazed in the development he's seeing in Nicholas. That it is completely obvious that the brain is regenerating itself and that nobody can tell what Nicholas can or will achieve. He credited us for fighting back in every area that we could. For being Nicholas's advocate against even him (the PA). The PA ate some humble pie that day, and for future patients of his, I am eternally grateful that he had the self-awareness to realize he had misjudged and that he could learn from his mistake. I felt a tiny stab of retribution too, of course, but mostly I'm just glad that he could reflect on his analysis and realize that perhaps he doesn't have all the answers. For the rest of his career, he will think of the little boy who surprised him when talking to parents. The little boy who refuses to stop.

Success!

I remember getting the call. Mike was on the other line and he was so upset that his voice was shaking. Since he was just leaving a check up at the neurosurgeon's office, I instantly went on high alert.

"What's wrong?"
"The PA is refusing to prescribe a helmet for Nicholas."
"WHY?"
"He said he doesn't think enough fluid has left his brain. That there's not enough brain matter yet for a helmet to work."
"Turn around."

We had spoken to Nicholas's pediatrician. He had agreed that it was time for cranial band therapy. We had spoken to all of his therapists. They agreed it was time for cranial band therapy. Why would the neurosurgeon's PA disagree with everyone else? And what had he said that had reduced my normally even keeled husband to shake with anger and defeat? I told Mike that I was coming to the office and to wait there for me. He faltered - told me the appointment was over and it was probably too late - except that our next followup wasn't scheduled until after Nicholas was over a year old and by then it would be too late to start the therapy. I told Mike if I had to follow the PA or the neurosurgeon to their cars when their days were over I would sit and wait for them. I suspected that an upset mother is the last thing the physician wants in his waiting room full of patients, so we would be brought back pretty quickly.

I spoke to the receptionist and the office manager quickly came out to ask me why I needed to see the PA. I firmly told her that he was refusing to prescribe a helmet for my son and we needed to discuss his reasons. Not surprisingly, we were brought into a room fairly quickly and the PA walked in shortly thereafter. I asked him point blank why he felt that a helmet wasn't the answer for our son.

He gave reasons. Some of them were probably valid. I trust my son's neurosurgeon and his staff immensely. The neurosurgeon has literally been inside my son's brain, and the likelihood that he'll be there again before Nicholas ages out of pediatric neurosurgery is high. But they don't live our life. They get to go home and leave brain surgeries and other related issues behind them. They get to sit down to dinner and talk about things like school and the new HOA rules and what they're doing this weekend. So while the office is staffed with amazing people, their passion will never equal ours. It simply can't. I understand that. So while I have literally trusted them with my son's life, I was not going to sit by and let them make a decision lightly that had the potential to impact Nicholas's life forever.

His reasons included that there's little literature or research on hydrocephalus patients and cranial band therapy success. That it would likely be unsuccessful because the shunt was still working on the tedious job of draining his overfilled ventricles. That, sure, we would move the skull but liquid moves a lot easier than brain matter and so it would probably just move back. That he just didn't think it would work.

I looked this PA in the eye and asked him if it would hurt Nicholas. If it could hurt him. He said no, of course not. So I asked him why not just try? He said we could try when he's older and his ventricles are drained back to normal sizes. That he could have a cranial reconstruction surgery at that point. And, haha, he just happened to know a great neurosurgeon. We stared at him. I asked him why we shouldn't try something that didn't require surgery and that Nicholas would never remember and instead jump directly to a surgical procedure, further recovery time, and possibly something that would traumatize him as he's older.

Obviously you've all seen the pictures, so you know that we walked out of that office that day with a prescription in hand. That the next fight was with the insurance company to get coverage. That we won that battle too and that Nicholas's skull has been gradually been re-shaped by the helmet and a dedicated orthotist who shaves out pieces of the helmet and adds pads to help Nicholas's head become less flat and more symmetrical.

I previously posted that Nicholas was at 26 mm asymmetry when this journey started. That his was the worst case that the orthotist had ever seen. That the challenge of taking on a hydrocephalus patient was almost too overwhelming. And that it's working. The helmet is reshaping Nicholas's head to be less asymmetrical. While some of our goal was to fix his head for vanity reasons, the vast majority was that he was having developmental difficulties because of the head shape. He was having a hard time sitting up because one side of his head was heavier than the other. He was having trouble rolling over because he had a giant cone in the back impeding him. Last month's measurements showed Nicholas at 9 mm asymmetry.

Nicholas met with his orthotist today and measurements happened. Accounting for some human error, Nicholas's head now sits at 5-6 mm of asymmetry. A head is considered to be within "normal" ranges of asymmetry when it's under 5 mm. It worked. It worked exactly like we hoped it would. And without surgery. Without a traumatic procedure. Sure, he had to wear his helmet a little longer than the average therapy length of 3 months, but so what? He'll never remember that time. Clearly this was a fight worth fighting.

Cranial Band Therapy: The Beginning

We always knew cranial band therapy (or helmet therapy) was a possibility for Nicholas. Because he was born with such a large head it was incredibly difficult for him to move it and so he spent a vast majority of the first several months of his life on his back with his head in the same spot. This created a pretty significant flat spot on the back of his head. Beyond that, because he had so much fluid inside his head and it's less dense than brain matter, his skull bones that are not fused yet were able to be moved around more easily based on where his fluid was. Once the brain matter started to push in and take over the areas the ventricles had previously occupied when the shunt started to significantly drain the fluid, the fluid that remained had to go somewhere and began to push out of the back soft spot. This created a point at the top of the back of his head. The shunt was turned down (which actually increases the amount of fluid it drains) and most of that fluid has been successfully drained out of his head. The point, however, remains because the bones have been pushed into that position.

It was a fight to even get the cranial band on Nicholas's head. We started with a fight with the PA at the neurosurgeon's office, then a fight with the insurance. We pushed on both fronts and won. The cranial band therapy started with getting a mold of Nicholas's head so that the band would be perfectly fitted to his head. He wasn't terribly appreciative of this process but it was a necessary part. The mold was then left to sit for 24 hours to dry and then sent to Arizona where the actual band would be made. We were told it would be ready for fitting in 2 weeks. We ended up not being able to get the fitting completed until three weeks after the mold due to our travel.

Nicholas was brought into the orthotics/prosthetics office and the band was placed on his head to insure it fit. What surprised us was that the band was not fitted perfectly tight against his head. It's loose and sometimes moves around. This makes sense because we're trying to change the shape of his head so his head needs some space to grow into. The first week there was no padding added, the fit was just checked and we were given a schedule to ease him into wearing the band full time. The first day he wore it for an hour and had it off for an hour. Second day, on for two hours, off for one hour. So on and so forth until he was wearing the band 23 hours a day by day seven. Yes, he even sleeps in the band. He gets an hour off to take a bath and for us to check for pressure sores. Poor dude is so sweaty when we take the band off. And stinky. We have to check his entire head for red spots and monitor them during the hour he has the band off. If the spots don't fade within the hour the band is off, we are to not put it back on and to contact the office the next morning for re-fitting. We don't want him to get any pressure sores from something that's supposed to be helping him!

The second appointment was a week after the fitting. The specialist looks at Nicholas's head and determines where the growth should be limited and where we want the growth to happen more. He does this by placing pads in specific places inside the band. This basically stops the head from growing more in the area where the pads are and promotes growth into the open spaces in the band. By doing this, we are hopefully encouraging growth from the flat spot in the back of his head that will help round out the head. Nicholas continues to go back and pads will continue to be placed.

True to his character, Nicholas has accepted the band with little fuss. He was uncomfortable on the first day but now that he's wearing it 23 hours a day, it's just another part of him that is helping him - much like his Mic-key button for feeding. He remains a happy baby who loves laughing at his big brother, chatters whenever he's awake, and smiles at anyone he meets.

A Helmet for a Warrior

After we won the fight with the insurance company, the prosthetic company quickly scheduled an appointment for Nicholas to get fitted with his helmet. The longer the wait to get the helmet on his head, the longer he has to wear it because head growth does slow down after a certain age and so the helmet needs to be on longer in order to be effective. His appointment was scheduled for a Tuesday afternoon and we were asked to have his hair cut before the appointment. Because his hair is so long, they were worried that the plaster would stick in his hair and create some issues.

The Saturday before his appointment, we took Nicholas to the barber that Mike and Zachary use. Ironically, the barber is named Nick. He is amazing and we are very excited that we found him. He's originally from New York and his father moved here to retire and opened the shop. Nick took over the shop and according to Mike, it is exactly like a barber shop you'd find in NYC. Nick exclusively cuts Zachary's hair and Zachary asks constantly if it's time to go see Nick and get his hair cut. When we told Nick that we were there for Nicholas's first haircut in order to prepare him for his helmet, Nick smiled and cut Nicholas's hair with buzzers. He saved Nicholas's first curls for me and refused to charge us for the cut. It was hard to see Nicholas's adorable hair go away, but if it would assist in any way in helping him move forward with treatment, it was worth it.

The following Tuesday, Mike packed up all the kids while I went to work and off they went to the prosthetic office. Nicholas's head was covered with plaster (he wasn't very happy) and his helmet was sized. The plaster mold needed to sit for 24 hours and set and then was shipped off to be made. It takes two weeks for the helmet to be made and sent back to the local office, so it should be back soon.

The helmet works by creating space where they want the head to fill and a solid place where they either want the head to stay the same or change shape. He is checked by the prosthetic company on a fairly regular basis and they shave off parts of the helmet to encourage growth. We aren't sure how long he'll be required to wear the helmet, but we're guessing it will be several months. We also aren't exactly positive that this will work - that was part of the fight we had getting the neurosurgeon's office to prescribe the helmet, but we are hopeful for positive results.

We also found several companies that make decals for the helmets to make them cute and decorative. Zachary helped pick some and soon Nicholas will look like R2D2 thanks to his big brother.

The Fight

After the prescription for the cranial band was written, I called Cigna to make sure that the equipment would be covered under our plan. Cigna has been overall fantastic during this entire process. They didn't blink at paying for a twin birth, never once questioned paying for Nicholas's NICU stay or surgeries. They set us up with a nurse case manager who was there to stand in and help us with any hospital procedures that we had. He can interpret what we're being told by hospital staff or pediatricians. He helps answer any questions we have. He is a liason between us and Cigna. After every hospital stay, we can expect a call from Ray.

When I called Cigna, the customer service rep informed me that she would contact the prescribing physician and determine the procedure and diagnosis codes to make sure we were covered. Since I called her at 5:30 p.m., she told me she would call when she got in the next day and call me back around 1 p.m. She called at 2 the next day with good news that the procedure and diagnosis codes made the equipment medically necessary and directed me where to go that was in network. We made the appointment I blogged about previously and started the process. The prosthetics company made the authorization request and we were told it could take up to 30 days. Ray happened to call us and told us he would try and expidite the process so Nicholas could get started on his treatment ASAP.

About 2 weeks went by and we received a call from the prosthetics company. Our authorization was denied. The reason was that the procedure code for the band was excluded from Mike's company's plan. They had a loophole - if Nicholas had skull reconstruction surgery they would cover it as a recovery item. This made little sense to us - we could potentially fix his issue with a $1500 piece of equipment when he was young enough that he wouldn't even remember it. Or...we could wait until he was over 2, continuing to hold up his development as he's having a hard time rolling over and holding his head up because the weight is not evenly distributed, have a traumatic and expensive surgery and THEN use the $1500 piece of equipment?

We went into fight mode. The first thing that happened was that we escalated the request to the "mis-quote department." Since we were originally told the equipment was covered, there was a possibility that they would cover it because they told us incorrect information. That would take 10-15 business days to be reviewed. While that was happening, we were requesting letters from all of Nicholas's providers - his neurosurgeon, pediatrician, speech therapist, occupational therapist, and physical therapist. Mike researched and found several journal articles published in scholarly journals proving that cranial band therapy is not only effective but among the best treatment for plagiocephaly. Mike also called his corporate HR office and sought their help. They began their research and promised to get back to us. I began work on a letter and we prepared to use their surgery loophole against them since Nicholas had already had brain surgery and this was actually partially the cause that created the need for the band. We commissioned Ray to go to the medical director at Cigna again to pressure an in house appeal.

Insurance in this country is fundamentally broken. I have seen it in my career - watching physicians have to scramble to prove their prescription is medically necessary to payers such as Medicare and Medicaid. I have experienced it now in my own life, having to fight to get a medically necessary procedure to help my son. It is a sad commentary on insurance coverage when a physician prescribes something and the insurance company gets to decide whether it is medically necessary for the patient. I agree completely that insurance should not have to cover something that is a convenience item or if the patient chooses to upgrade an item, but if a physician deems something medically necessary, that should be the only requirement. Insurance must be fixed. I'm not commenting on if I feel the ACA addresses this or not, because this isn't about a political debate here, but insurance needs an overhaul. It's not good for patients. And I say that with a typically amazing insurance in my pocket.

With all these irons in the fire, we were preparing to send in our appeal, which would go to a third party impartial physician. We were certain that the appeal would be granted or we would fight harder. The prosthetic company was amazing and told us that should the insurance company fail to cover the equipment, they would provide it to us at the price they would charge Cigna and that we could make payments. We kept this in the back of our mind in the event that Cigna was going to take too long and we would need to pay up front and seek reimbursement. Last Friday Mike got a call from his HR representative. His amazing company agreed with us and planned on contacting Cigna and telling them to move forward with authorization for the cranial band. She said she assumed we should receive a call within the next business day. Meanwhile, Cigna had taken a look at the policy they were denying the authorization on and discovered that no such policy existed in the plan Mike's company paid for. Under the original policy that we (and the original agent I had spoken with) had researched, Nicholas qualified and Cigna should pay. The prosthetics company called with an approved authorization and congratulations and Nicholas was scheduled for his fitting. Mid-July he will have his fitting and hopefully have the band soon after.