YOU, YOUR DOCTOR, AND YOUR HMO
By Cliff and Rosa Kinney
This is written for the new parents of a diastrophic child. The first thing parents must do is to love their child. You have been blessed with a wonderful gift and this child now makes you a part of a larger community that you never could have gotten into otherwise. Then you need to sit down and educate yourself about your child's dwarfism and its related orthopedic complications. Diastrophics have a specific set of orthopedic complications and these are what your child and his/her doctor will have to deal with over the years. Also, you need to talk to other DDs and to parents of DD children who have gone through the corrective surgeries with their children. This will give you a more realistic picture of your child's medical needs, more so than talking to your current doctors.
If you are dealing with an HMO, you need to find a doctor who takes care of the "special" children in your HMO system. This doctor must be sympathetic of your child's needs and be willing to answer all the questions (and more questions) that you will ask. With the knowledge you have gained from educating yourself, you will be able to force this doctor to send your child out of the system for orthopedic care. You need to ask this doctor the hard questions: How many diastrophics has he/she ever operated on? NOT other types of dwarfism, but diastrophic dysplasia specifically. The answer will usually be none.
The first time that we were sent out of the Kaiser system was for our daughter Angela's neck surgery. Our daughter's Kaiser orthopedic doctor was the one who takes care of the so-called "special" children, those with unique problems such as spina bifida and Downs syndrome. We went to see this doctor to get a second opinion because we didn't feel that our daughter's first Kaiser orthopedic surgeon was the right person for her.
Our first impression of this new doctor was that he was a very fine person. He spent over an hour with us and didn't talk down to us. He admitted that he had never before seen diastrophic dysplasia, even though he came from the Children's Orthopedic Hospital in Los Angeles, but he had started to read about this particular condition.
We were first discussing our daughter's feet and how to fix them with this doctor, but one concern was the neck and if it was stable, so he ordered an MRI since x-rays could not tell the total story. After the MRI was completed, we went in for consultation and could see that something was wrong. The doctor talked about doing a fusion, but we told him we didn't think he was the right man for this type of delicate surgery since he had never even seen the inside of a DD neck.
We decided to make an appointment with Dr. Bassett, who just happened to be at Children's Hospital in Los Angeles. We had read an article that he had written about back and neck problems in dwarfs in LPA Today (the newsletter for Little People of America, a social organization for dwarfed individuals). We made an appointment with Dr. Bassett and retrieved her MRIs from Kaiser. As we were getting ready for this appointment, my wife got a call from the orthopedic surgeon at Kaiser requesting copies of the MRIs to send to a doctor that he knew at Children's. I decided to take the package to this Kaiser orthopedic surgeon myself and while we were waiting for copies to be made, I had a talk with this doctor. When I informed him of our appointment with Dr. Bassett, he told me that Kaiser would not pay for it. My exact words to him were, "SO WHAT?! I didn't ask Kaiser to pay for it. I made the appointment and I will pay for it." The cost was around $100-125. The question I will ask you parents: Is your child worth a little money?
We went to see Dr. Bassett and discovered that our daughter's MRIs had already arrived, so he had already made a diagnosis and was prepared to discuss our daughter's case. We were told that she did need surgery, that it was risky, but that it could be done. Shortly thereafter, we were informed by the Kaiser doctor that he would approve a consultation with Dr. Tolo from Children's Hospital.
We learned from our friends in LPA that Dr. Tolo was just as good as Dr. Bassett, and had, as a matter of fact, worked at Johns Hopkins Hospital with Dr. Kopits. Dr. Tolo informed us that Angela needed the surgery and that it needed to be done as soon as possible. We would, however, have to wait until she was at least 15 months old since the skull of a baby was too soft to hold the pins necessary for a halo brace.
Angela's neck surgery was performed by Dr. Tolo at Children's Hospital, with the approval of Kaiser since none of the other doctors within the Kaiser system wanted to take on the job once they were informed of just how delicate it would be. Even her own Kaiser orthopedic surgeon said that while he could perform this surgery on an adult or an average-sized child, he would not even attempt this surgery on Angela.
To allow your child to get out of your own HMO system, the first step is to convince your doctor that a surgery for your child is way out of their league. The next step is to have your HMO doctor send his/her recommendations to the committee for approval of the surgery. Your HMO will only cover what is put on paper, so make sure that all that needs to be done is down in writing. This way, you will not have any balance to pay and, to tell you the truth, most of the time there are deal made between HMOs and outside hospitals on charges.
Lastly, to follow up on what we said previously, EDUCATE yourself about your child's dwarfism and its orthopedic complications. That way, no doctor can tell you that he/she can treat these things if they can't really do so. The knowledge that you gain makes you a threat to your doctor and he/she cannot tell you what is best for your child. Would you put your child in the hands of someone unskilled in the DD anatomy? Not us!
There are people who can help you with finding a doctor in your area or be able to tell you that your surgeon is well versed enough to be able to do it. We know that even the best have made mistakes, but you still need to try to go to the ones who have the most experience, since you do not want your child to be a medical experiment. Also, an orthopedist who specializes in treating dwarfism can teach you even more about your child's condition. For instance, we learned more about the DD knees through our experiences. Our HMO doctor took x-rays and then sent them to a specialist (Dr. Tolo). We learned that there is so much cartilage around the knee that can't be seen on x-rays and that an ultrasound (similar to one that your wife may have had during pregnancy) needed to be done.
Remember YOU are your child's best advocate. A child cannot, at his/her tender age, make the necessary, tough medical decisions. Our daughter Angela has been sent out of the Kaiser system three times. Two of those times were for her neck and, at the present time, she is being treated out of the system for her knees. She will be sent out again for correction to her feet when the time comes that it can be done. The only thing that we can add is that you must be prepared to leave the system and pay some money if you want the best care for your child.