You'll find hundreds of files on cleft lip, cleft palate here on

This one is about: Working With Insurance Companies & Getting Them To Pay

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Here's our insurance story...

Two years ago my husband and I were both working in Houston for companies involved in Space Station/shuttle work. Since layoffs and hiring come and go at the whims of congress we decided that Mike should find a job in another industry. Our main concern was finding a company that would cover Jeffrey's pre-existing heart and cleft conditions. About a year later Mike did find a job in the chemical industry that would cover Jeffrey's cleft associated problems, heart problems and my pregnancy.

Six months after Mike changed jobs Jeffrey needed ear tubes again. Dr. S., an ENT on our insurance list, put in the ear tubes. Six weeks later, at a cleft palate team meeting, we were told that one of the tubes was out and his ear drum was already retracting. The cleft palate team surgeon who put in Jeffrey's first set of tubes used a special kind of tube that was like a rivet and stayed in his ears for over 1.5 years. I asked Dr. S. about using a different type of tube the second time around since the t-tubes didn't seem to work for Jeffrey. Dr. S. wouldn't consider it. Five months later Jeffrey's ear drum burst because one of the new t-tubes had become clogged, a condition we later learned isn't uncommon with t-tubes along with more scarring than is found with other types of tubes.

In between the ear tube surgeries we had the fistula in Jeffrey's palate closed. Jeffrey's cleft palate team surgeon, who does about 40 palates a year, was not covered by our insurance. I called the three plastic surgeons on the list. Two of the surgeons did about 3 palates a year and the surgeon we went with did about six palates a year. Dr. R assured us that he could close the fistula. However, about 4 days after surgery, the fistula started leaking again. Now, 7 months later, the whole fistula has reopened.

After the second set of t-tubes messed up, my husband and I had had enough. We were going to use cleft palate team doctors if we had to spend the rest of our lives paying off the bills!  Mike called Judy at the insurance company, who had precertified Jeffrey's previous surgeries, and asked her what we could do to use the ENT and plastic surgeon from our cleft palate team and have it covered by the insurance. Judy told Mike to write a letter to her documenting what had happened to Jeffrey and she would see what she could do. About two weeks later Judy called me at work to tell me the good news that we could use the ENT and surgeon from our team and, as an added bonus, they could operate at the hospital we wanted since there wasn't a children's hospital on the insurance's list of hospitals.

Following is the letter that did the trick for us...

Dear Judy,

Our son Jeffrey, who is now 3 years old, was born with cleft lip and palate, ASD and a cleft in his mitrol valve. Due to the palate defect he is susceptible to ear and sinus infections. Jeffrey has had ear tubes since he was nine months old. We have had problems with the last three surgeries performed on Jeffrey by surgeons who are not members of any cleft palate team.

Dr. S put P.E. tubes in Jeffrey on June 21, 1995 which came out six weeks later. Dr. S replaced the tubes on August 23, 1995 and those tubes lasted about 4 months. Dr. S used T-tubes and, even though the first tubes came out in six weeks, he would not even entertain the thought of using a different type of  P.E. tube. Jeffrey's first set of P.E. tubes, put in by Dr. M, an ENT on the Herman Hospital cleft palate team, stayed in for over 1.5 years. This week Jeffrey's right ear drum burst for the second time. He now needs another surgery to have another set of P.E. tubes inserted. Jeffrey must have P.E. tubes. Without them his ear drums retract and he has a noticeable hearing loss.

On August 4, 1995 Dr. R attempted to repaired a small fistula in Jeffrey's hard palate. The fistula reopened about 2 weeks later. Jeffrey will now need another palate surgery and an obturator in the mean time.

The above doctors do not specialize in children with cleft palates. We had much better success when Jeffrey was seeing doctors from a cleft palate team in Houston. Besides the stress of redoing these unsuccessful operations the cost to the insurance company is not insignificant. The three surgeries totaled over $10,000.

We would like to use Dr. M as Jeffrey's ENT and Dr. T as Jeffrey's plastic surgeon in the future. We strongly feel that Jeffrey's conditions are best treated by professionals who are used to treating cleft affected persons. We also feel that using these doctors would result in a cost savings to the insurance company who would be getting the best doctors for the money and hopefully avoiding more unnecessary surgeries.


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