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| Responses to People Magazine | |
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message from Kevin Kelly,
Plagiocephaly.org
Webmaster:To the Editor: While I applaud People magazine for drawing attention to the rising incidence of positional plagiocephaly, I believe that several key points have been neglected in favor of focusing only on the cosmetic aspects of the condition. For example, it is important for parents to know that if they have concerns about the shape of their child’s head, they should seek medical advice to rule out other conditions (for example, torticollis or craniosynostosis) that require other forms of intervention, perhaps even surgery. In addition, parents should be aware that if left untreated, children, especially those with moderate to severe deformities may experience other medical issues later in life (for example, problems with the TMJ, temporomandibular joint). Finally, it should be noted that the goal of treatment is normalcy, not perfection. However, even if one chooses to focus only on the aesthetic aspects of the condition, one should not understate the importance of simply “looking normal” to a child’s emotional and social development, particularly as children grow into their teens. These factors and others make positional plagiocephaly a much greater concern than was presented in the article. Kevin M. Kelly, Ph.D. Assoc. Research Scientist, College of Public Health, University of Iowa Webmaster, www.Plagiocephaly.org |
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Sent: Sunday, July 10, 2005 1:27 AM To: Kevin-Kelly@UIowa.edu Subject: Sent to People Mag Dear People Editor/Writer, I am also a proud parent of a daughter that had SEVERE abnormalities (brachy/plagio) in regard to head shape. Her head was literally growing UP instead of out in the back thanks to our ped telling us to keep our baby on her back at all time to decrease the risk of SIDS (back to sleep program). Her ears pop'd out like dumbo and she had no occipital lobe by 8 weeks! Strangers could point it out to us! She was banded at 4.75 months and stayed in her doc band for 9 weeks. We did not care about cosmetics and got 3 DOCTORS opinions - we cared about her face looking normal and that she would not have severe MEDICAL problems later on (headaches, ear infections) - clearly something we could prevent with the DOC band. As a writer/editor of a magazine you should know that their are two sides to every story. That is journalism. There is nothing worse than reading an grossly misinformed article about a subject that hits close to home for MANY families. How hurtful this was to our little community of concerned and caring parents. At best, you should have allowed the reader to hear both sides of the story and give them the links/tools to research themselves. You could have given parents tips on how to avoid the upsetting news of finding out that your child would need to be casted, banded for several weeks and months at a heavy cost. HOW ABOUT SOME TIPS on how to keep the head from getting flat (as in some, but not all cases, it is preventable!) Personally, if it was JUST cosmetic, we would have skipped this treatment. I could have thought of a much more fun way to spend $3000 of our hard earned money - that was about 2 mortgage payments for us. Get your facts straight so you can help people, not hurt them. Jessica Welch Escondido, CA |
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Sent: Friday, July 08, 2005 11:20 AM To: editor@people.com Cc: kevin-kelly@uiowa.edu Subject: "Article" on Plagiocephaly To the editor and staff at People Magazine: I know that you have already received numerous letters about your recent article on Plagiocephaly. I have read many of them on the Plagiocephaly website. Because you have heard most of the arguments before, I will not run through the lengthy list of medical issues associated with this condition. My son is seven (7) months old and has been in a DOC band for a little over a month. Great progress has been made, but we will likely need to have another helmet fitted before sufficient correction occurs. Please understand the pain you have caused. After explaining to family and friends about the medical concerns and reasons we were having to do this, they passed along your article as if they were questioning what we had been telling them. They did not mean to do that, but they assumed that your reporter had done SOME research and seemed puzzled that we would blow something out of proportion the way we must have. As a result of the lack of understanding of this condition, I had to struggle to get insurance to cover this in the first place, and I am going to face a real struggle to get insurance to cover the next one. When we take our son out in public, people look at us as if we have done something to him. The glances are awkward and unforgiving. Your article will only enhance that reaction. Untreated, many children with Plagiocephaly would likely suffer (among other things) vision problems, migraines, muscular joint problems in their necks, and potentially other neurological issues. It is beyond uncaring, it is cruel to report so callously about this condition. I beg you, for the sake of the many, many parents out there struggling through a terribly emotional ordeal, please RE-PRINT the story with correct facts and an apology. Reference the new article on the cover. A weak-kneed retraction buried in the magazine is insufficient. Neither is it sufficient to simply print a few (I suspect carefully chosen) letters from upset parents or doctors. As a magazine with your size and reputation, you have the unique opportunity in everything you do to influence this world. Here, you have done so poorly. With a well researched and accurately rewritten story, you have the power to educate the public about a very serious medical condition that even pediatricians are not as familiar with as they should be. Thank you for time and attention. Skip Perkins |
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Sent: Saturday, July 02, 2005 8:14 AM To: Kevin-Kelly@UIowa.edu Subject: MY LETTER IS BEING PUBLISHED IN THE JULY 18TH ISSUE OF PEOPLE! Just thought I'd pass some GREAT news on....I just got word that my rebuttle letter will be published in the July 18th issue. Below is what I wrote to the editor: Dear Editor: I was so excited when I saw the picture of the cute little boy with a molding helmet. I then continued on to read the story and was appalled! The article downplayed the medical need of this helmet!What about the medical part? The person who wrote this basically said it was a "cosmetic" issue. It's not! My son was 2 months old when we started noticing his head was flat. We took him to the pediatrician and they said to reposition him and it would round itself out over time. By 6 months it didn't change. He also had some facial bulging. His ears were out of line and his eyes drooped slightly. We took him to Dr. Arno Fried at Hackensack Medical Center. He was wonderful. Dr. Fried did a CT scan on our son and he was diagnosed with craniosynotosis. This is when the skull bones fuse prematurely. He said it was the bones that did not require surgery, in which most cases it does. He prescribed a DOC band (a molding helmet). Our son was casted for his helmet in December 2001. On December 31, 2001 he started to wear his helmet 23 hours per day for 4 months. His head is still not 100%, it's alot better than it was. When our son was released Dr. Fried gave us some great advice, don't give him crew cuts. Children who are diagnosed with plagio, craniosynotosis or torticollis can have problems with their jaws and some do have visual problems. It was also stated in the article that "the insurance company covered most of the $2,400 cost." Did they get paid right away or did they have to fight for it? I'm sure it took some time. Most insurance companies do not want to cover his helmet. They consider it "cosmetic". Some insurance companies do cover it with no questions asked. I was one of the unlucky ones whose insurance company did not want to cover it. It took me over 13 months to get reimbursed $2800 of the $3000 we had to pay. By not showing the medical end of it, insurance companies will continue not to pay if they are led to believe that it is purely for cosmetic reasons, as stated in your article. In my opinion the couple in the article who had the split decision were looking at it in a purely cosmetic manner! This article should have went farther in depth to show the medical necessity that sometimes occurs due to plagiocephaly, craniosynotosis or torticollis. I suggest your log onto parentpaper.com and look at the March 2005 issue and read the story written by Dr. Arno Fried so that you understand the difference between the "cosmetic" and medical needs of this helmet! You may also want to go to cranialtech.com and read the comments on the parents discussion board regarding your article. They're not too happy either! Sincerely, Kristen Peterson Midland Park, NJ 07432 |
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Sent: Friday, July 01, 2005 10:40 PM To: Kevin-Kelly@uiowa.edu Subject: Copy of letter to People Magazine editor Dear Kevin, Thank you for posting our comments regarding the article in People magazine. I personally am very upset and disgusted as how this article was written. Below is a copy of the letter I wrote and I'm even sending them pictures. Lauren Dear People Magazine, I am writing regarding your recent article from this month’s magazine relating to the DOC band helmets. I am absolutely appalled by the content of this article. It shows that it was written without thorough knowledge of the medical conditions that necessitate an infant to wear this device. Your article never mentions the severity of other related medical conditions such as Craniosynostosis and torticollis. Your article gives a false image of the parents of infants wearing these bands because you mention that parents are doing it for strictly cosmetic reasons, which is absolutely not the case. Prior to having my twins, I was unaware of Plagiocephaly and what the condition was. I had seen other children wearing helmets and never realized what they were for. When your readers read your article that have no knowledge of the medical condition, they will automatically be judging parents as vain. Furthermore, your statement that insurance companies cover most of the cost is misleading. My daughter is currently wearing her 2nd band and insurance has denied the claim. Do you think I would spend $6000 ($3000 for each helmet) just because I want her to have a perfect head? I don’t think so. I have been on several discussion boards where parents find help and support for plagiocephaly & torticollis, and craniosyntosis and all of these sites have messages from parents regarding how disappointed and upset they are about your article. I think that as a reputable magazine (maybe not anymore) you should reconsider writing the article with more thorough knowledge of the medical conditions that require the helmets. My twin daughter’s head was mis-shaped due to constrictions in-utero and she developed severe plagiocephaly, which was noticeable after birth. As you can see from the pictures attached her head is severely misaligned and she had developed facial asymmetry. This is a serious condition which left untreated could have lead to further complications. The severity of her condition could obviously not been treated by strictly positioning. My daughter additionally developed neck problems due to her condition, which we had to administer physical therapy for during the time she wears the helmet. After just 3 months in her DOC band, she has shown a lot of progress. I hope that you consider rewriting the article to inform the public of medical necessity and the give your readers the truth about why children are wearing these medical helmets. We are not parents that are going the extra mile and having our insurance companies spend thousands of dollars just so our children can have perfectly shaped heads so they won’t be teased in school. On the contrary, we are concerned parents do all we can and use the medical devices available so for the health of our children. Lauren Alin (Disgusted reader of your magazine) |
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Sent: Friday, July 01, 2005 8:22 PM To: editor@people.com Subject: Disgraceful article on Plagiocephaly Dear Editor: I am writing to express my extreme disgust and disappointment in your article entitled "Help! My Baby has a Flat Head!" What a glib, superficial, and callous piece of "journalism" regarding a serious medical condition. I do understand that your article was not meant to address certain medical causes for deformities of babies' skulls, causes such as Torticollis (tight neck muscles causing babies to look only toward one side at almost all times), Craniosynostosis (premature fusing of one or more sutures on baby's skull), or intra-uterine constraint (cramped quarters for baby before birth). However, Plagiocephaly caused strictly by adhering to the Back to Sleep campaign is no less serious a condition and carries with it the same potential effects later in life...chronic ear infections and migraine, TMJ, jaw misalignment, and vision problems, among others. Your article implies that if a parent adheres strictly to the advice of the Back to Sleep campaign, strictly enough for it to cause a flattening of the head, then it is not a medical condition but a cosmetic one, and that if parents seek out band/helmet treatment for it, they are "going too far in their quest for the perfect baby." All we, as parents of children with plagiocephaly, are on a quest for is physical and psychological health for our children. In addition to treating the physical manifestation of Plagiocephaly, correcting the deformity also gives our children a better chance to have a healthy self esteem and a sense of fitting in with their peers which no one can deny is an integral part of growing up nowadays. Many, if not most, pediatricians are still under the impression that plagiocephaly, no matter how it was caused, will round out on its own. And we parents are conditioned to trust the word of our doctors over our own maternal instincts. Your article has done a disservice to all parents. You have ridiculed and questioned the decisions of the ones that decided to use band/helmet treatments to correct their children's head shape. And you have deepened the level of self doubt felt by many parents just starting out on this medical journey. If only one child is sentenced to a life of ridicule and low self esteem because your article caused a parent to leave their child's condition untreated for fear of seeming to be on a "quest for the perfect child," then that is one child too many, and the fault falls squarely in your lap and the laps of your careless writers. Sincerely, Rebecca Scalise Mother of a plagio baby Former People Magazine reader |
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Sent: Friday, July 01, 2005 8:54 AM To: Kevin-Kelly@UIowa.edu Subject: People Plagio. Article Dear Kevin, Following is what I wrote to the Editor at People magazine. Thank you for posting the comments. Hopefully some of these People readers will get real information from the comments. Peter Bertling father of Hannah, July 2004 DOC Band grad Dear Editor: I was excited to hear that People magazine was writing an article on plagiocephaly. I thought that the article would raise awareness in people about the problems of leaving children on their backs, as recommended by the American Academy of Pediatrics in the SIDS Back To Sleep campaign. Unfortunately, the spin that was put on your article made me feel hurt and angry by your magazine. You failed to mention all of the ways that a child can develop plagiocephaly such as back sleeping, prematurity, torticollis (a tightened neck muscle), in utero constraint, multiple births (twins, triplets, etc.) to name a few. Dr. Joseph Madsen at Boston's Children's Hospital, who was interviewed for your article, diagnosed my daughter, Hannah, with the worst case of cranial asymmetry he had seen. She had an asymmetry of 20 millimeters, which was caused by in utero constraint. Prior to Hannah, Dr. Madsen stated that the worst he had seen was a 16 millimeter asymmetry. After hearing about how untreated "plagio" could lead to the development of TMJ, chronic ear infections, and head and facial deformity we opted to begin 15 months of driving 3 hours, each way, to Connecticut every week or two to have Hannah fitted properly for the 3 helmets she ended up having to have because of her severity. We felt the heartache of having to fight our insurance company twice to pay for the helmet, because they stated it was a cosmetic issue, as opposed to a prosthesis to correct a problem. They have since changed their policy and how this treatment is classified. We constantly had people ask if Hannah was "retarded" or if we were just overprotective parents preventing her from hurting her head. Others would bless her because she "had something wrong with her." Others would stare themselves, but direct their innocent children, who asked what was wrong, not to stare because it was rude. In the end, we would simply laugh at the ignorance and try to educate these individuals as to what the helmet was actually doing, RESHAPING her head, not preventing it. Would I have preferred to not have had to go through the whole process? Yes. Do I regret doing it to help my child have a normal shaped head? No. And I would do it all over again. Even though Hannah has been out of her helmet for about a year now, I see that we are still educating the ignorant. Please do proper research and include all of the facts next time you decide to report on something such as this subject. Peter J. Bertling Cape Cod, MA |
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Sent: Wednesday, June 29, 2005 12:12 PM To: Kevin-Kelly@UIowa.edu Subject: Response to article in People Magazine "Help, My Baby Has A Flat Head!" Dear Editor, I am writing in response to your article in the July 4th issue "Help my baby has a flat head!" I would like to say that I am appalled at this story and was completely taken back. My son is 10 months old and was diagnosed with Craniosynostosis of the sagittal suture at almost 4 months old. He has been under the supervision of a pediatric neurosurgeon at Johns Hopkins Hospital in Baltimore, MD and is scheduled for surgery next week, July 6th. The surgery that he is having is an extensive surgery that involves cutting bone out of the top of his skull to allow his head to grow naturally and to prevent possible mental retardation and other serious health risks. I wish that we would have been able to treat our son with just a helmet. I wish that he did not have to go through this major event in his life at just 10 months old. There is a chance that he will be required to wear a helmet after the surgery to which we will oblige. My next door neighbor, he is 10 now, was diagnosed with Craniosynostosis at 5 1/2 or 6 months old. You can ask his mother about how his brain had started to erode parts of his skull due to the fact that his head could not grow normally. I'm sure they wish that they had been able to fix him with just a helmet as well. Two surgeries later he is doing fine and has no developmental delays, but if this had gone undetected he surely would have serious issues today. PLEASE, try to tell us that this was for cosmetic reasons and that we are in search of the perfect baby. My baby is perfect with his football shaped head. Your story was inaccurate without checking ALL of your facts first. I wish and hope that you will do your homework and print a retraction or write another article fixing your mistakes. I feel awful for the parents out there who read your article and are now second guessing their child and the shape of their head thinking they are just being vain about it. You should take a look at www.capps.org an organization and support group trying to get awareness out there and help others like me going through this rough time. Also, check out www.jorgeposada.com and see what his foundation is doing to promote awareness. I was a big fan of people, but now I'm not so sure - How many other articles have I read that have been reported incorrectly? Sincerely, Megan R. Travers |
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Sent: Tuesday, June 28, 2005 7:55 PM To: kevin-kelly@UIowa.edu Subject: plagio article Here's mine... Dear editor, I am writing in response to the article, "Help! My Baby Has a Flat Head!" in your July 4 issue. I am extremely disappointed that you would print such a biased and incomplete article. By belittling the effects of positional plagiocephaly by stating that parents are "turning to helmets to deal with what they perceive as a problem", you have had a negative impact on the awareness of this condition as well as craniosynostosis, which is an actual fusing of the bones of the skull. The only way to treat craniosynostosis is through invasive surgery which at times needs to be followed with helmet therapy. It was totally irresponsible to run an article on plagiocephaly without mentioning the fact that only a specialist can diagnose this condition or that a CT scan is the only definitive way to discern if it is plagiocephaly or craniosynostosis. I wonder how you feel knowing that your article may deter families from seeking medical advice or treating one of these conditions out of worry that others may look upon them as vain or on a "quest for perfect babies". There is no quest for a perfect baby. Your baby is perfect from the moment he or she is placed in your arms. As parents, there is nothing more painful than hearing that there is anything "wrong" with them. My son was diagnosed with craniosynostosis as an infant and had surgery at 10 months old. He did not require helmet therapy, but if he had, we would have gladly put that helmet on him every single day. We considered ourselves lucky that his condition, unlike so many other children, was cosmetic and could be improved. Perhaps the most insensitive piece of this article was that it was included in your "Trends" department. Capris, flip-flops, and Livestrong bracelets are trends. How dare you imply that treating a condition that if left untreated could lead to lifelong developmental and psychological difficulties is a "trend" or that parents would enter into these decisions lightly. I expect that you will do the right thing and print a follow up article that includes all of the facts. Included in this article should be resources where parents can turn for support from other parents who have faced the same issues. Given the damage that you have done in regards to the general public, parents facing these conditions will need support from people who have been there and will not judge them as you have judged us. Lauren Luscombe Massachusetts |
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Sent: Tuesday, June 28, 2005 6:27 PM To: Kevin-Kelly@UIowa.edu Subject: Response to People Magazine article re: Positional Plagiocephaly Kevin, The following is a comment I sent to People magazine's editor today regarding their article on Positional Plagiocephaly. To whom it may concern, As the mother of a son who had Positional Plagiocephaly due to congenital reasons, I was extremely saddened to read your recent article on this issue. I am amazed that a story regarding a serious medical condition would be printed in the "Trends" section of your magazine. For my son, having Plagiocephaly was related to a medical problem. Our decision to treat it was not so we could be a part of a "trend", nor was our family, as you describe it, on a “quest for the perfect baby.” In my son’s case, in addition to his "flat head", his ears were misaligned and he had marked asymmetry in his facial features, including a bulging right cheek and bossing (protrusion) on one side of his forehead. Due to congenital Torticollis (tightening of the neck muscle on one side) my son could not turn his head to the right. Therefore, I was not able to simply reposition him and prevent further deformation. I waited but his head did not "round out" as he got older. It was heartbreaking, as a mother, to see my child's face become more disfigured over time, as his facial bones, on one side, pushed farther forward. Getting a shaping helmet was the only intervention available to help prevent this severe problem from getting worse. When we got the helmet for our son, it was because, as parents, we would do anything to help him. Is doing everything you can to prevent your child’s face from becoming more disfigured, as you put it in your article: “going to far”? Your article presents only one perspective, that of Positional Plagiocephaly being merely a trivial cosmetic issue involving "vain" parents. From my perspective, as a parent who has been there, I can tell you, it was far from a trivial issue and vanity had nothing to do with it. Cheryl Clift San Ramon, California |
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Sent: Tuesday, June 28, 2005 1:57 PM To: Kevin-Kelly@UIowa.edu Subject: My Letter to the Editor Dear Editor, As a first time mother, the decision to band my 7 month old son did require me to think of "cosmetics". I thought about how my baby would look wearing his band and all of the looks he would get from people who didn't understand the treatment of Plagio. These thoughts almost made me decide NOT to band my son. Thankfully, our Doctor told us the FACTS of Plagio and all of the MEDICAL issues that can occur if left untreated. I am very glad we went ahead with the band and currently 6 weeks into treatment we see great improvement. I know we did what was best for our son and I only wish your article would have done a better job raising awareness of the medical issue of Plagio. Now, I fear that we will get even more looks from people as they think that I am "Forcing" my son to wear his helmet in pursuit of a "perfect baby". I would appreciate your Magazine taking another look at this issue and printing more accurate information. Sincerely, Carrie Smith Charlotte, NC |
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Sent: Tuesday, June 28, 2005 1:41 PM To: Kelly, Kevin M Subject: Here is a letter I sent to people magazine as well My son was recently diagnosed with plagiocephaly and has had his helmet for 2 weeks now. My in-laws gave me a copy of the People magazine article the other day and I almost fell on the floor from shock that someone not only wrote the article but that it actually made it past the editor and put in print. Here is a copy of the letter I sent to the editor of People magazine: I am not only disappointed in People magazine but outraged as well! After reading your article "Help! My baby has a flat head" I was appalled that you merely talked about the cosmetic aspect of plagiocephaly and made it sound as if us parents that have our child wearing a molding helmet are simply vain people that want a cupie doll for a baby. My son was recently diagnosed with a moderate case of positional plagiocephaly. Your article neglected to mention that most babies like my son have much more than just a flat spot on the back of their head, but there is usually asymmetry of the face and ears as well as bulging of the forehead. You also neglected to mention there are health dangers related to untreated plagiocephaly such as as persistent flattening and asymmetry, recurrent ear infections, TMJ, and migraine headaches. I can't understand why you chose to leave that out of the article. The teasing by other children or the possibility of my son shaving his head when he gets older were not even a thought in our minds---our son's health was what came first and foremost in our decision to get him a molding helmet. I am a first time mom and throughout my pregnancy and even afterward the risk of SIDS and the Back to Sleep campaign were shoved down my throat. The hospital and pediatrician all told me I needed to have my baby spend 10 minutes a day doing tummy time. Not once did any of them tell me I should actually be spending lots of supervised tummy time from birth with my son or that I should alternate the end you place your baby's head at in the crib and on the changing table or when bottle feeding, be sure to alternate which side you hold your baby on during feedings or limit use of swings, bouncy seats, car seats, etc. Instead I found out the hard way AFTER my son's head had flattened to the point that the aggressive repositional therapy we tried beginning at two months of age did nothing. My son was born a month premature making him even more susceptible to positional plagiocephaly. Our son has had the molding helmet for a week now and we can already see improvements in his face and head. He wears the helmet 23 hours a day with an hour break for bath time. He acts exactly the same as he did before we put the helmet on him and continues to act as if it's not even there. So no my husband and I are not going to far in the quest for a perfect baby by having our son wear a molding helmet. We are simply doing everything we can to keep him healthy and happy now and in the future. Everett's Mom Garden City, Michigan |
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Sent: Tuesday, June 28, 2005 12:36 PM To: editor@people.com Subject: Response to HELP! My baby has a flat head! I was so taken back by the fact that you actually let this article get published in your magazine. I used to think of "People" as not your ordinary tabloid rag but now I'm convinced that your just like the rest. And then to put it in the "trends" section was the worst part. Like this is just a faze or fashion statement. What were you thinking, obviously not, when this went to proof for print. Your writers didn't research the most common and serious of reasons for parents to get head banding treatment for their children. All they needed to do was search the Internet for a whole world of websites focusing on this issue. I speak from experience and I'll tell you how I know. My daughter, Viola, was born with Congenital Plagiocephaly (flat-sided head shape). She was delivered by c-section in my 42 week. There was no more room in the womb for her so she got squished and so did her head. Not only that but she also had Congenital Muscular Torticollis (twisted neck syndrome) which was diagnosed 1 month later. She could only turn her head one way, thus encouraging the flatness. Our pediatrician assured us that with physical therapy for her neck, that her head would eventually "round itself out". That didn't happen. In fact her head seemed to get worse. After being referred to specialists, (maxillo-facial, speech, ENT, and a pediatric neurosurgeon) we made the decision to get our daughter in head banding treatment. It was the only way to prevent future medical problems, such as speech, TMJ, and visual, and hearing issues. Our daughter is in her last 3 weeks of wearing her "helmet" and she has improved greatly and even though I had to fly back and forth in the same day from Jacksonville, FL to Miami, every other week for 4 months, it was worth every crazy moment. Our story is only one of many. There are children with more serious reasons for the treatment such as Craniosystosis (which can be life threatening), and Brachycephaly )which can sometimes require major surgery). If you don't know what those conditions are, look it up! This article is such a huge injustice to the public and this misinformation could cause some parents to think twice about bringing up this serious medical issue with their child's pediatrician. I hope you are willing to carry the burden that there will be some children that could suffer greatly from your poor excuse of media. You should print a retraction or some kind of explanation of the truth behind this serious subject. It makes me physically ill to think of all the children and parents effected by this. I'll never buy or read your publication again. I'm so disgusted, I don't even know how to sign this letter. Sincerely ?, Robin Barquilla Proud Mother of a flat headed child. |
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Sent: Tuesday, June 28, 2005 10:44 AM To: Kelly, Kevin M Subject: My letter to the editor of People re: plagiocephaly article Kevin, Thank you for putting our response letters on your website. People online has a link to plagiocephaly.org right next the the plagiocephaly article title, so I know there will be lots of traffic to your website. Hopefully our letters to the editor will educate parents curious about plagiocephaly treatment, unlike the People article. My letter to the editor follows: To Whom It May Concern: Please tell me I was hallucinating when I saw that you had placed an article on medical treatment for infants in the "Trends" section! Your article, "Help! My Baby Has a Flat Head," treated the very serious issue of Deformational Plagiocephaly as if it were a fashion debate. I am flabbergasted that a condition flagged by the American Academy of Pediatrics as being deformation of the infant skull, and worthy of correction by repositioning, physical therapy, and helmets or bands, would be watered down to an inexcusable allegation of a parent's quest for perfection. Deformational Plagiocephaly, Brachycephaly, and Scaphocephaly are not minor, cosmetic variations in infant skull shape; they are serious head shape, facial, ear, and forehead deformations that are WAY outside the normal, anthropometric range of what is considered a normal head shape. Your alleged "quest for perfection" and "vanity" accusations are, in reality, a hope that ANY improvement in skull shape could be achieved through treatment with repositioning or helmets and bands. The laziness and incompetence of the article authors are mind-boggling. Helmets and Bands CORRECT plagiocephaly by redirecting growth to desired areas - they don't PREVENT plagiocephaly! In addition to the obvious concern of craniofacial deformation clearly outside the norm, research is emerging that shows that marked asymmetry of the skull shape indicates misalignment on the inside of the mandibular, ocular, auditory, nasal areas as well, leading to an increased risk of problems. Another well-regarded study concludes that plagiocephalic babies end up having grade-school learning issues. I would have expected a simple, online search of medical journals on the subject of Plagiocephaly to be a bare minimum expectation of any journalist covering a medical issue. Sadly, I strongly suspect that the editor's bias toward this treatment as being "Trendy" was already present when this story was assigned. Your magazine's insensitivity and incompetence when giving Deformational Plagiocephaly it's highest mainstream platform to date has done irreparable harm to the very important crusade of plagiocephaly prevention and treatment. Surely some parents will swallow your pill of this condition being a "cosmetic" and "vanity" issue, and sadly seek no further information on treatments available - this is a consequence with which your magazine leadership will have to live. I strongly suggest you publish a properly researched follow-up article immediately - show some respect for the babies being treated for this skull deformation by not putting the article in the "Trends" section, please!!!!!!! No longer a reader of People, Christie |
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Sent: Tuesday, June 28, 2005 8:47 AM To: Kelly, Kevin M Subject: Hi Kevin, here is my letter to the editor: I am extremely disappointed in your article on positional plagiocephaly. I can not understand why an upstanding magazine like People would publish an article that appears to be based on the writer's opinion rather than actual facts. Positional plagiocephaly is not something to be taken lightly. Contrary to what the article states, it is not always just "a cosmetic issue". A misshapen head can lead to facial asymmetry, vision problems, torticollis, or breathing problems. In addition, there is no mention at all that a child with a misshapen head may have a condition called craniosynostosis, something that is often mistaken for positional plagiocephaly. The article leads people to believe that these helmets are torture for the child, right from the line that says "But are parents going too far in the quest for perfect babies?" In my opinion, it has nothing to do with the quest for a perfect baby, but has everything to do with what is best for a child in the long run. I would put my child in a molding helmet any day versus letting him live a life of being teased and having low self esteem. One last point I would like to make is that these molding helmets are not new as stated in the article, they have been around a while and are FDA approved. A follow up article with proper education on this condition, as well as Craniosynostosis would be greatly appreciated by many. Thank you for taking the time to read this. Sincerely, Katie Garner www.craniokids.org |
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Sent: Tuesday, June 28, 2005 12:58 AM To: Kelly, Kevin M Subject: Re: People Magazines Article about Plagiocephaly Kevin, Here is a copy of the letter I sent to the editor Editor, I was so excited to hear from my sister there was an article in People magazine about Plagiocephaly and how common it was becoming because of infants sleeping on their backs for the prevention of SIDS. My husband rushed right out to buy your magazine to read the article. I was very disappointed in the lack of real information of your article. It angered me to read your magazine feels we parents who support the treatment of plagiocephaly are doing so only for cosmetic reasons and to have the perfect child. Your article is saying for our own vanity we will put a band on our children, 23 hours a day for months! Are you a parent? If so, would you make choices for your children simply for your own vanity? I'm sure the answer is no. My son Adam has severe plagiocephaly along with severe torticollis and delayed gross motor skills. My son has been going to physical therapy, sometimes twice a week, and my husband, family, and I work with my son 2-3 times a day. My little boy works very hard and I can tell you it is not for his cosmetic appearance!! My insurance covers treatment of Plagiocephaly 100% but doesn't cover plastic surgery or any type of breast surgery. What does that tell you! Insurance companies are realizing the treatment of Plagiocephaly is NOT for cosmetic purposes but for the health and well being of our children! Your magazine was always the 1st magazine we would buy for a plane trip or for laying out in the sun. I will never buy your magazine again & will email everyone I know to boycott your magazine until you write an article that does justice to Plagiocephaly and any other topics you have misreported! Sincerely, Greta Verd Mother to Adam |
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Sent: Monday, June 27, 2005 8:22 PM To: Kevin-Kelly@UIowa.edu Subject: Keep the fires burning! Dear Editor: You obviously struck a nerve. Do a little research and re-write. Robert M. Johnston |
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Sent: Monday, June 27, 2005 3:13 PM To: kevin-kelly@uiowa.edu Subject: Copy of Letter to the Editor I have reviewed your recent article on ONE family's experience with a child suffering from plagiocephaly. However, I am completely disappointed by your lack of education and ethical judgment. My son was diagnosed in May with both plagiocephaly and torticollis. His condition also included facial asymmetry. If your reporter had taken more time to review the medical evidence, which is simply to locate on various websites (cappskids.org; cranialtech.com), she would have found that despite what the particular parent interviewees told her regarding the condition being cosmetic, that the condition is a medical condition, covered by many insurance companies, the subject of various appeals and Court actions. Further, I am informed and believe that your reporter spoke to many other parents who informed your repoter of the medical aspects of this condition, but it is clear that she simply choose to ignore them. It is unfortunate that you choose to take this avenue of reporting, which has now subjected many parents of Plagio kids to endless, unsolicited comments about us trying to make our kids "perfect" when that is not the case at all. As all parents do, we are looking out for the best interest of our children and addressing medical problems early in life to avoid many medical issue later in life, but not limited to, respiratory and vision problems, migraine headaches, difficulty chewing, TMJ, and increased ear infections, as well as psychological consequences. I suggest that in the future you take some responsibility for your reporters to ensure they are reporting on the true story and not just one parents opinion. Amy L. Smith-Compos |
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Sent: Monday, June 27, 2005 1:46 PM To: Kevin-Kelly@UIowa.edu Subject: "People" Article Comment Hi Kevin, I'm glad you decided to post comments about the "People" article on Plagiocephaly. I am a moderator over on the Yahoo! Positional Plagiocephaly group (http://health.groups.yahoo.com/group/Plagiocephaly/) and have put countless hours into trying to educate people about plagio over the last couple years. What a giant step backwards this article is! I was also interviewed for this article and was really excited about the idea of plagio finally getting some good national coverage. What a HUGE disappointment. I'm very glad my daughter's story was not included in such a poorly reported article! I really hope no baby suffers with being left untreated because of this article. Sarah Dear Editor: Your article on Plagiocephaly really saddens me as you have done a huge injustice to babies and parents everywhere. Babies get flat heads for many reasons: back sleeping, prematurity, torticollis (a tightened neck muscle which requires physical therapy to correct), inutero constraint, and a very serious condition called Craniosynostosis. My daughter was born with a flattened head from the way she was positioned in utero and it was made worse by her back sleeping. We saw Dr. Joseph Madsen at Boston's Children's Hospital (who was quoted in your article), who described to us the dangers of untreated Plagiocephaly as persistent head and facial deformity, TMJ, and ear infections. He told us the only effective way to correct my daughter's severely flattened head was with a helmet, and I'm proud of my choice and was thrilled with my daughter's correction. These helmets are by prescription only and are FDA approved. I did not "force" my child to wear a helmet to "ensure a perfect head." I wanted to give her the head she should have, and while it is still not "perfect," she looks normal will be able to wear sunglasses and bike helmets like other kids. Most parents wouldn't hesitate to get their child teeth braces--why is that more acceptable? Why would I leave my daughter with a severely misshapen head if it could be fixed in such an easy, painless, and non-invasive way? Furthermore, your article stated that helmets PREVENT flatness, which is not the reason behind their design--they CORRECT flatness. Now you have thousands of parents all over the world who will be self-conscious of their helmeted babies because the audience of People magazine has been told it is a trend and parents are vainly on a "quest for perfect babies." You should be ashamed that your article may scare parents away from seeking this easy and effective treatment for their babies. If you want to speak poorly of anyone it should be the medical community for not following the American Academy of Pediatrics’ guidelines on Plagiocephaly and not educating parents properly about how! to prevent and treat flatness. Sarah Bertling Cape Cod, Ma Mom to Hannah, severe plagio corrected with 3 DOCband Helmets http://hannahsnoggin.typepad.com |
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Sent: Monday, June 27, 2005 1:39 PM Subject: People Article: My letters to the editor and interviewer. These are the letters I wrote to the editor and the interviewer that contacted me. I am so unhappy about this article, it hurts to know that someone could let this junk be written as I'm sure it does anyone else who has gone through this. Subj: How could you print that article on Plagiocephaly????? Date: 6/25/2005 10:35:39 PM Eastern Daylight Time I cannot believe after all the information your people were provided by informed educated parents and doctors that this is what you came up with. How dare you say my son's plagiocephaly treatment is a quest for perfection. How about a quest for my child to NOT be delayed in gross motor skills, how about a quest for my son to be able to turn his head correctly, eat correctly and develope the muscles in his entire body correctly. I gave my story as many other parents going through this nightmare did to your so called interviewer with the understanding that she actually cared about the FACTS, but boy was I wrong. Your article is wrong plain and simple, it has incorrect information in it and only contains facts that would help with the angle you wanted to portray. I can honestly say I was willing to give People Magazine a chance and not believe it to be the rag so many said it was, but again I was wrong. Once again I say,HOW DARE YOU!!!!! Carol Gatto Mom to Dominick 8 mo,plagio/muscle imbalance Doc Band #1 Feb.10th-April 7th 2005 Doc Band #2 April 26th - present also Anthony(14),Frankie(10),& Carly(5) Subj: How Dare You Do That Date: 6/25/2005 10:42:39 PM Eastern Daylight Time Giovanni, When you spoke with me in detail about my son with plagiocephaly, I was under the impression that you were going to do a medical article, not the crap that was printed in this issue. What happened to all the information you were given, what happened to the facts??? How dare you let them do this when you spoke with us and knew what this was like for all of us. We shared our stories about this nightmare and you let them do this. I cannot believe that you could let them print this article with so many medical facts being left out and absolutely wrong. You should be ashamed of yourself, but I'm sure you really don't care as long as it sells magazines. Carol Gatto Mom to Dominick 8 mo,plagio/muscle imbalance caused by plagio Doc Band #1 Feb.10th-April 7th 2005 Doc Band #2 April 26th - present also Anthony(14),Frankie(10),& Carly(5) |
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Sent: Monday, June 27, 2005 12:03 PM To: Kelly, Kevin M Subject: Plagiocephaly article Here is a copy of the letter I sent to the editor: I was initially excited to see an article in People dealing with Plagiocephaly, but after reading the article am thoroughly disgusted at the way it portrayed parents who choose to use a helmet or band for their child. Not only did the article portray the parents in a bad light, it also lacked journalistic integrity. The reporting was one-sided and implied that parents were being selfish and subjecting their children to uncomfortable treatments in the pursuit of "perfection". Not only is this untrue, it is irresponsible of your magazine to print such drivel. The article did not mention the many doctors who don't consider plagiocephaly to be only a "cosmetic" problem. The facial and ear asymmetry that can result from plagiocephaly were not discussed, nor were levels of severity, treatment options or how the helmets work. It also did not mention torticollis, a muscular condition of the neck which is commonly associated with plagiocephaly. My son Connor, who was in physical therapy for 10 months due to torticollis, wore a helmet for 3 months. He didn't mind wearing his helmet one bit and the results were very good. We weren't striving for perfection, only to make his head look more normal and to decrease the chances of further problems down the road. It's articles like yours that spread misinformation and prevent parents, whose children could benefit from such treatments, from making informed decisions. Your article is a disservice to children with plagiocephaly and the parents who love them. Sincerely, Andrea Gagen |
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Sent: Monday, June 27, 2005 11:44 AM To: Kevin-Kelly@UIowa.edu Subject: People Magazine article. Kevin, Please find attached the letter I wrote to People magazine.... Dear Editor, When I first saw the headline that you had an article about plagiocephaly ("Help! My Baby Has a Flat Head, July 4, 2005") in your most recent issue, I was very excited that People was raising awareness about a major issue that affected my family. However, when I began reading the article, I was extremely disappointed that your magazine portrayed the shaping bands as something that overzealous parents do in a quest for the perfect child. In our case, as in may of the parents we encountered at Cranial Technologies (where we got our daughter's DOCband), our daughter was born with a condition called torticollis (a tightening of the neck muscle on one side, which limits the baby's range of motion, thereby flattening the back of the head on one side). The bands do not cause any pain or discomfort for the child - they aren't "forced to wear a helmet" any more than they are forced to wear a diaper and a t-shirt - the bands only weigh a few ounces. Torticollis and Plagiocephaly are medical conditions that require treatment, including physical therapy, and are not simply an aesthetic issue for a boy who may shave his head or go bald in later life. This is evidenced by the fact that insurance does cover these shaping bands (and wouldn't cover breast enhancement or a face lift!). Sincerely, Kerri Wolfe |
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Sent: Monday, June 27, 2005 8:25 AM To: Kelly, Kevin M Subject: disapproval letter to people magazine. I also was not happy with the people magazine article, thought it spreads awareness it does not do it in an appropriate or helpful way. Here is my letter to the editor. Dear editor, I was deeply upset when I read your article in the July 4 issue of People magazine, “Help! My baby has a flat head.” Positional plagiocephaly is not a condition to be taken lightly aside from causing facial asymmetry, vision problems, hearing problems, torticollis, and developmental delay, did you know that a flat head can also mean that the skull bones may have closed to soon, a condition called craniosynostosis? Your article made no mention of this potentially life threatening condition that can be mistaken for placiocephaly, I know because my son has got four of the six main skull bones fused and he was misdiagnosed as having placiocephaly. Because of this misdiagnosis my son is now 2 years old and has the development of a nine month old and will be undergoing and invasive surgery in a few weeks to relieve the excess pressure from his brain pushing on his skull, a surgery that because of his age will have to be done multiple times as he grows. Craniosynostosis can only be corrected by an invasive surgery where the child’s skull is literally cut open and reshaped to prevent further problems or hopefully stop existing problems and it has the best results when it is caught early from us moms who want our “flat headed” babies perfect as you put it and ask the doctors about it, you know what? My flat-headed baby is perfect but without this treatment he could die or have severe brain damage. Without treatment of craniosynostosis a child can suffer from many things including brain damage, damage to the eyes affecting eyesight, damage to the ears affecting hearing, developmentally delay, and potential death. Did you know that the only way to diagnosis this condition is to ask your doctor about your child’s “flat head” and have at CT scan done. Your article not only makes this condition seem trivial but will also make more parents who notice something funny about their child’s head shape not ask their doctors about it because they are afraid to look like they want a “perfect child” as you put it. Did you also know that the molding helmets that we are forcing our children to wear are also used after an endoscopic craniosynostosis surgery to mold the head so that the child does not have to undergo the more invasive surgery would you say that is going to far in the quest for the perfect baby? A person does not know from the outside why the child is wearing his helmet and those of us who are using it for post op molding are facing the questions and stares from strangers who read your article and feel we are trying to make our baby perfect. If you had done any real research for your article you would have known these things. Any flat headedness needs to be pointed out to the child’s doctor so it can be investigated fully. I feel that a retraction of your bias article is needed and an article portraying the true facts of placiocephaly and craniosynostosis should be written. Angela Norris, mom of a perfect flat headed baby with craniosynostosis and I wouldn’t trade him for the world. Member of www.cappskids.org spreading awareness of placiocephaly and craniosynostosis. |
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Sent: Monday, June 27, 2005 8:10 AM To: Kelly, Kevin M Subject: Re: article in People Hi Kevin, It took me awhile to digest what really came across in this article, and I am still in shock. I did send a response to the editor as well. So, here is a copy of my letter, from a mother whose child had to have surgery to correct the plagio. To say that I am disappointed in this article is a complete understatement! I am FURIOUS! Not one time did you mention what can happen to children left untreated with plagio. If the person that wrote this article is truly a reporter, they would have found out ALL the facts about plagio prior to writing an article like this! My son, Jaxson, who is now almost 2 years old suffered from severe plagiocephaly. He had torticollis as well (is that cosmetic, too??). Jaxson received a CranioCap from Gillette Childrens and wore that from the time he was 5 months old to the time he was 9 months old. Little correction happened. The CranialFacial surgeon that seen him said he was one of the most severe cases he had ever seen. Cosmetic you say?! Because my son was so severe, his brain shifted to the left, where it pointed outwards on the left side, the right completely flat. We had to take him to a neurosurgeon, who said surgery was the only option. If you think THAT is cosmetic, why would my insurance pay for it? More importantly, why would I put my son through a major surgery where the remove his skull to correct the shape? That is completely insane. He had 84 stitches across the top of his head, suffered for weeks with pain, and months without sleeping. He will have a scar for the rest of his life. But yet, you say cosmetic. How about telling the real truth behind Plagio. The truth of what may happen if left untreated. The truth of children who were never diagnosed now suffer with insecurities of their shape. The fact of children who HAVE to have correction done in order to have a life that should come to them automatically. Tell the truth about doctors who dismiss plagio as nothing, just as you did. I have to say, I was an avid reader of People until this article. I am so disgusted by it, that I will never buy another one of your magazines again, and I will make sure I speak to my entire family and my friends about this... hoping they will no longer receive your magazine either! Kim Seguin - mother to Jaxson, 23 months who had SURGERY (non cosmetic) to correct severe plagio Duluth, MN |
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Sent: Sunday, June 26, 2005 1:36 PM Subject: re: people article Hi Kevin, Just wanted to pass along a copy of my letter to the editor of People... I commend Plagiocephaly.org for helping to create healthy debate... Thanks! ~Jen Dear Editor, While your magazine is a tabloid, I would've expected just a little bit more accuracy in your recent article on plagiocephaly. Not only were many of your facts incorrect (ie. that helmets "prevent" flatheadedness; they actually correct it), but you did not accurately portray families who have struggled with plagio and the subsequent treatment. I am sure that the number of letters that you receive in response to this will be many, so mine will be brief. I urge you to reprint some corrections and a large apology to all of the parents and CHILDREN that you have offended. This article was not only offensive, but does nothing to assist that other families never have to go through an ordeal like plagio. My daughter's plagiocephaly is correctable. I am giving you and your magazine the opportunity to correct your flaws. Regards, Jennifer & Nicholas Civello Disgusted by People Magazine and parents to the lovely lopsided head Alyson- 7.5 months old Carthage NY |
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Sent: Sunday, June 26, 2005 1:05 PM Subject: plagio article dear kevin i will attach a copy of the email i sent to the editor dear editor i am writing to you in protest at the article in this weeks people magazine, your article was the most insensitive and downright condescending article i have ever had the misfortune of reading. How can you justify trivialising such a condition as plagiocephaly, it is completely out of order and you and your features editor should be thoroughly ashamed do you even realise that there is a condition very closely linked to plagiocephaly called craniosynostosis which is a potentially life threatening condition plagiocephaly cannot be distinguished from craniosynostosis without proper evaluation by 3d ct scan. this was not once mentioned in your article, why not? your decision not to mention this possible link has probably ensured that lots of babies with this condition could now go undiagnosed. do you also realise that many small babies who have undergone extensive cranial vault remodeling surgery to correct their craniosynostosis also have to wear a helmet after surgery to ensure adequate correction of their cranium....would you suggest that this is also 'going to far in the quest for a perfect baby' as well??? people on the outside have no idea if a baby is wearing that helmet for positional plagio or post-surgical correction so now, are we the parents of cranio babies going to be forced to answer the questioning stares of members of the public who are wondering why we are 'forcing our babies to wear a helmet for 23 hours a day'? you need to and MUST post an article on craniosynostosis as the other side of plagio to right all the wrongs that you have made with your article..........if you need any assistance with this articles you will find a wealth of information and families willing to assist you i await and expect your reply with the utmost anticipation sincerely Natalie secka |
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Sent: Sunday, June 26, 2005 8:45 AM Subject: Article in People Magazine I am appalled that an article like that would be put in People magazine!! There is absolutely no mention of Craniosynostosis and the chance that having a "flat spot" may be caused from Craniosynostosis, not just Positional. These helmets are not just used for "Cosmetic Purposes" only!! My daughter has Cranio, and I was shocked to see the lack of actual information supplied in this article. Making a child wear a helmet for 23 hours a day is not a decision any of us take lightly. Our children's lives, well being and self esteem are some of the many considerations that are made before making such a decision. It is not a decision made out of Vanity!! These children need to be checked for Craniosynostosis and I am just baffled that you would put such an article in People magazine. "Poor Diego" Poor people having to read such an ill informed article!! A retraction is definitely needed or another article mentioning the possibility that what they think is Positional may be Cranio. [People Magazine is] putting peoples lives in jeopardy here and with no mention of the Cranio, [they] are setting back all the work other organizations such as CAPPS KIDS have done to make people aware of this disorder. Not a fan of People Magazine anymore and really disappointed that this was printed and made into such a trivial matter. A letter has been sent to the Editor of People's Magazine as well about my disappointment and anger about this article. I am also stupefied that [Plagiocephaly.org] would actually have this article flashing on the Plagiocephaly Site!! It's nothing to be proud of and gives little valid information. Tracey Katz Ontario, Canada |
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Date: Sat, 25 Jun 2005 13:22:26 -0700 (PDT) Subject: Re: [Plagio] Re: People Magazine I think the author did a terrible job on this. Like most of you stated, it is not simply a cosmetic procedure. We are seeing a nuero and a plastic surgeon for tort. I guess that's just cosmetic too, since I don't want him to look like he is twisted around. Its disgusting to me that they could take a serious medical condition and distort it like that. I am overweight and dieting. Do I do it for cosmetic reasons? NO. There are health issues associated, just like with plagio. And for a lot of our kids, its a side effect from something else (tort, etc). I will definitely be writing the editor on this one. Crissy mom to Eli, 8 mo with tort & plagio. See the Nuero Monday! |
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Sent: Saturday, June 25, 2005 12:02 PM |
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We want to know what you think about the
article! Send your response to Kevin-Kelly@UIowa.edu. And make your feelings know to editor@people.com Thank You! |
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