"Like all fathers, I thought we had the perfect baby. So when our son, Xavier, was a couple of months old, and my wife asked me, 'Does his head look flat in the back?' I rejected the idea. But the question was odd enough that it lingered. Within a week or so, after looking at his head from different angles, I changed my mind: There was a flat surface on his head ... Thus began our odyssey into a little-known but surprisingly common condition in infants: plagiocephaly -- literally, an oblique or misshapen head." -- James V. Grimaldi (Post, March 8)
Washington Post staff writer James V. Grimaldi tells his story and reports on the condition among infants called plagiocephaly in today's article, "Baby's First Helmet". Of the two kinds of plagiocephaly, positional -- or deformational -- plagiocephaly has skyrocketed among infants, Grimaldi reports. Since 1992, the number of infants with the condition has increased from one in 400 to as many as one in 10, according to numerous medical studies. The spike is probably because of the "Back to Sleep" program, begun after a 1992 proclamation by the American Academy of Pediatrics (AAP) that infants be placed on their backs when they sleep to prevent sudden infant death syndrome (SIDS). The program is considered a success, but as Grimaldi explains, it's not without consequences.
Grimaldi was online Tuesday, March 8, at 3 p.m. ET to examine the rise of plagiocephaly among infants.
Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.
Reading, Pa.: Just wanted to tell you I think that your article was wonderful and I think it is great that you are raising awareness about Torticollis and Plagiocephaly! My 7-month-old Daughter has Torticollis and Plagiocephaly and is in therapy and will be getting her Helmet Tomorrow (through Hanger Orthotics and Prosthetics).
So many people are unaware of this problem, and, because of that, it often goes untreated.
James V. Grimaldi: Thanks for your question, and welcome to the chat. The reason we decided to do this article for the Post was to share information with parents who might confront the same issues and questions we did. There isn't much out there -- at least not in Dr. Spock, or other parenting books. Good luck with your helmet and getting over the torticollis. We think the helmet helped solve the torticollis problem.
Fairfax, Va.: Mr. Grimaldi,
I found your article interesting and informative, however, I am concerned that it did not adequately stress putting your baby on his/her back to sleep. The follow-on article, Ways to Help Keep Kids Better Rounded, has several recommendations on placing a child on his/her side. Parents maymisinterprett this and put their child on his/her stomach. As a board member of the local SIDS MID-Atlantic organization, I am aware of the SIDS risk as well as thedevastatingg grief a parent faces when his or her child dies from SIDS. I encourage you to promote Back to Sleep as parents,care giverss and extended families need to be diligent. There can be no "gray area." As a bereaved parent myself, I do not wish other families to experience this type of loss.
James V. Grimaldi: Thanks for that reminder, which echoes my story and the recommendation of the American Academy of Pediatrics. Also, my sympathy for your loss. As the sidebar notes, "tummy time" emphasizes supervised play on the stomach and discourages lengthy and unnecessary periods on the back, such as keeping your infant in one of those portable car seats or an infant swing at home.
Colchester, U.K.: How did Xavier's torticollis end up? Did it ever completely disappear?
Our seven-month-old daughter also has torticollis, and we've been doing neck stretches under the guidance of a physiotherapist for several months. It seems to have caused a slight improvement, but she still can't turn her head as far to the right as to the left. I've started wondering if she will always be that way. She's getting stronger at resisting the stretches and I don't know how much longer we'll be able to hold her down!
James V. Grimaldi: I feel your pain. It seemed like the exercises weren't working for us and that they would never end. I encourage you to keep it up and eventually your child will get better. The stretches really help. Another trick is to remember to reposition your child in the crib. That will force her to turn her head in the direction against the torticollis, and inevitably stretch her head in that direction. When you enter and leave the room, she'll try to turn her head in that direction. Good luck.
Washington, D.C.: I think your article was great. And while I didn't have this problem, I did have a lazy eye as a child. Luckily my parents took me to aneye doctorr early enough and it was corrected. And yeah, wearing a patch on one eye wasn't the best ever, but I am so thankful that I don't have to wear glasses now. Wearing a helmet can also be compared to wearing braces. No one would think that they were harming their child by having him wear braces, would they?
James V. Grimaldi: I don't know about lazy eyes, but when we made our decision, we definitely made the analogy to wearing braces on your teeth. Orthodontia has largely a cosmetic element to it. We asked ourselves, would we put braces on our kids' teeth?
Washington, D.C.: I had one question. The helmet restrained growth of the skull in some places and encouraged growth in other. How does this effect the development of the brain? Would it restrict a part that is important?
James V. Grimaldi: No one really knows how the helmet will affect the development of the brain. That was a little scary. But no one knows the opposite, either: How does having a flat head affect the brain. In other words, by letting him sleep on his head, we already were reshaping his head by making it flat in the back. One study seemed to show a link between deformational plagiocephaly and attention-deficit hyperactivity disorder. (That study was conducted mostly over the telephone and the author acknowledges methodologic imperfections.) So, if we didn't reshape his head, would we be exposing him to ADD?
In the end, we could determine no harm from using the helmet and potential harm if we didn't. We decided that not fixing his head would likely affect his socio-psychological development (ie, he would likely be teased). In talking to other parents, concern about psychological well-being seems to be a key factor.
Portland, Ore.: Does a baby's misshapened head have any brain damage connected to it, or is it strictly cosmetic?
My grandson who is almost eight had a flat head. As he gets older, his skull is becoming much more rounded and with HAIR on his head, the flatness is barelynoticeablee except to those of us who remember him as an infant. By the way, he's in the top three students in his 2nd grade class, has an attention span to rival most adults, has been a computer nerd since he was two and nobody has EVER made fun of his head.
In the Pacific Northwest, there was a tribe of Indians, known as the 'flatheads' ... their foreheads weredeliberatelyy flattened as infants and apparently stayed flat throughout their lives. They were also of normal and above normal intelligence. Just a little trivia, I thought I'd throw in the mix.
Babies ought to be put on their stomachs when they are awake as a matter of exercise for their backs, arms, stomachs. Putting them in an 'exersaucer' at a few months is also good. Even before they can sit alone, they can beproppedd up with a blanket relieving some of the stress of laying on their backs all the time.
James V. Grimaldi: There is absolutely no evidence of brain damage from plagiocephaly. And there is evidence that people with deformational plagiocephaly have been very successful in life. I read a few papers on the "flathead" Indians. Many cultures have been known to deliberately reshape children's heads.
Washington, D.C.: How long does the baby need to wear the helmet? Would surgery be required for baby with torticollis?
James V. Grimaldi: The length of time for wearing the helmet depends on the age and how much of the first-year growth spurt is left. Generally, it is no longer than six months.
Surgery is not required for torticollis.
There is a form of plagiocephaly that requires surgery, but it is very rare. It occurs when the bone in the head closes too soon. Modern-day molding helmets were pioneered in Seattle by Dr. Sterling Clarren as treatment following the more severe plagiocephaly (called craniosynostosis).
Herndon, Va.: Were you concerned at at initially about hydrocephalis?
James V. Grimaldi: Nope. We had a good pediatrician who ruled that out. But we were referred to a specialist to make sure he did not have craniosynostosis.
Reston, Va.: My son also had plagiocephaly. We met with two well-respected neurosurgeons (one at INOVA Fairfax, one at Johns Hopkins) and were strongly discouraged from banding. Both surgeons cited recent research showing that at age two there is no difference in head shape between plagio children who had been banded and those who had not been. Their opinion was that the improvements touted by helmet advocates would occur naturally anyway, and therefore banding was unnecessary. Are you aware of this research and if so, how do you respond to it? By the way, we decided not to band our son, and at age 12 months his head shape has improved substantially, but is still noticeable by a practiced eye.
James V. Grimaldi: Yes, I referred to this research in my article. The studies differ, frankly. One study was written by a pediatrician at Harvard who showed that children who use the helmet see more correction that those who try only repositioning. This decision is an individual one that should be made in consultation with your pediatrician. Also, from what I've read, and from my interviews, the helmet is only recommended for those moderate-to-severe cases. I believe that correction through use of the helmet is less successful for the mild cases. I do not advocate one decision over another and would never question another parent's choice on this topic. It isn't an easy one. We hope that walking through our decision-making helps others make a decision, too. But we were not trying to say there is only one "correct" answer.
Washington, D.C.: Forgive me, but when reading your piece, I couldn't help wonder -- how much was this for the future comfort of your son, and how much was to achieve that oh-so elusive perfection that our society so values? It seems this is not a recent phenomenon as much as our culture's demands for physical perfection -- even in infants.
James V. Grimaldi: Believe me, we thought about this long and hard. We really don't expect our son to be "perfect." As my father taught me, the only perfection is in heaven. We also knew that we would get people fired up about this topic (something else I thought long about before exposing my family to the media spotlight). But, again, we asked ourselves if we would put braces on our kids' teeth. In another age, orthodontia would be seen as extravagant. My son's head to this day is still not perfect. In fact, no one's head is. It is less flat than it used to be. Now, let's hope his teeth are straight.
New Market, Md.: Hello -- I enjoyed reading your article. My 11-month-old daughter should begin wearing her DOC Band in two weeks. We went through Cranial Technologies in Annandale. What were the reasons for going with the other company mentioned in the article? Thank you for raising awareness on this issue. We did not receive much encouragement to get the band from the medical community. We heard many positive experiences once we talked to parents.
James V. Grimaldi: We were lucky to have a smart pediatrician who knew what the American Academy of Pediatrics recommends: Several months of therapy, and, if that doesn't work, consider the helmet. I can't help but think it was because our doctor is younger. On the other hand, a helmet is not necessary for every child. Some pediatricians are worried about scare tactics by the helmet makers. That's a legitimate concern. In our case, where our son ended up -- after wearing the helmet -- is where many plagiocephalic kids are without ever wearing the helmet.
Newport News, Va.: My son has severe congenital muscular torticollis (CMT) and he is now nine months old. We have been doing extensive PT with him for the last seven months, but he still has severe plagiocephaly, a severe head tilt, and the neck muscle is as tight as ever. We are now considering a helmet as one option. Did you continue to do PT with the helmet and, if so, was it difficult? Also, do you recommend going right to Terpenning or having a helmet made where we live??
James V. Grimaldi: Yes, we continued to do PT with the helmet. PT was tough both with and without the helmet. We do not advocate any helmet maker over any other. We encourage you to do your own research and make your own informed choice.
Georgetown, Ky.: Mr. Grimaldi,
I want to commend you on a very informative and broad-reaching article on diagnosis and treatment of positional plagiocephaly, wonderfully woven in with your own personal experience. I was particularly impressed with your mentioning of studies comparing repositioning with helmeting. As a parent who successfully treated our daughter's plagiocephaly with aggressive repositioning, it's extremely helpful to have accurate information on outcomes of various treatment protocols so that one will make a decision with an eye to appropriate outcome expectations. I wanted to write and commment on the study you cited that showed similar outcomes between repositioning and helmeting -- yes, this study concluded as such, but it may be worthwhile to mention that the rrepositioningregimen took three times longer, or an average of one year, to get those same results. If parents were to wait an entire year to see if repositioning delivered the desired results, and found that they lacked correction, the optimoptimism for helmeting would have largely passed owing to the babies advanced age.
Thank you so much for writing your story and increasing plagiocephaly awareness; I continue to be distressed to hear of parents who are not informed of the helmet option by their pediatrician or specialist for consideration. Plagiocephaly is aptly named "Deformational Plagiocephaly" because it is a three-dimensional deformation of the skull, skull base, and sometimes facial asymmetry. There is nothing wrong with parents' choosing to correct their baby's head shape during the small window of time when malmalleabilitykes this possible.
James V. Grimaldi: That encapsulates the real dilemma. If you keep trying repositioning and you don't see correction, it is too late for the helmet. Again, from what I've read, helmeting is preferable for severe cases, not mild ones.
Rockville, Md.: What a neat juxtaposition: 3 of the top 4 most emailed articles are about parenthood, yours, "Too Perfect" and "A Young Father's Rare Choice." Yours reminded me of "Too Perfect." Did you ever consider that there are worse things in the world than having a lumpy head (like everyone else in the world) that your child could go through? Isn't this just another obsession with perfect children? The neck muscle is one thing - it's an actual problem - but come on, who has a perfect egg-shaped head? Maybe you should read about the teen single father, count your blessings and spend all that time, energy, emotion and money on chilling out. What more are you going to subject your child to in the name of perfection? As you can tell, the whole thing gets me pretty fired up. I actually feel bad for your son that he just can't be okay like he is.
James V. Grimaldi: This is just the kind of response we worried about and thought about. We know there are lots of worse things that could happen to our children and we count our blessings every day that we have healthy, beautiful children. We were not looking for perfection. But, given the choices, if we could make one small thing a little bit easier for our child (and the insurance company agreed that it should be covered), then why not?
Boston, Mass.: Do you know if there has been any investigation into how to prevent the flattening while still putting the baby to sleep on his back?
Would regular "tummy-time" from birth prevent it?
James V. Grimaldi: There is a doctor at Children's Harvard Medical Center who has devised a pillow that might actually prevent positional plagiocephaly. He's told me that he has a patent pending, but does not intend to make money off of it. He just wants to help parents.
There are a number of techniques mentioned in the sidebar to my article.
New Market, Md.: Thank you for responding earlier. My main question was about how you chose the star band over the DOC band at Cranial technologies? Was there something about your appointment at Cranial technologies that left you with concerns? What information did you receive to determine which band your son received. Thank you so much for response.
James V. Grimaldi: No, not really. We had a nice visit. We saw them both as being equally prepared to meet our needs, and both clinics seemed to have evidence of success. The one we chose was a bit cheaper, and we could have afforded to front the cost if the insurance said no. (Insurance said yes.) And time was of the essence. If we had waited for approval on the more expensive helmet, then we would have lost critical time. And, finally and frankly, Annandale was too far from our house.
Teeth: I applaud your doing what you and your doctors thought best. At the age of about 7, our daughter wore a dental brace for just a few months that noticeably realigned her lower jaw with the upper. Her face is a different shape and she is saved the potential for temporomandibular jaw disorder in later life. Who wouldn't save their kid problems?
James V. Grimaldi: Your case sounds more serious, but there is parallel thinking here. We didn't see any down sides to our decision.
Newport News, Va.: Just a response to the one reader who was outraged -- this is just more than a bumpy head. There is considerable facial asymmetry involved. One eye is smaller and much lower, one ear is smaller and much lower, the mouth and nose can also be completely out of balance. The symsyndromen also cause motor difficulties due to the lack of balance ...
James V. Grimaldi: It is true that our son's head had a bulge on the forehead and his ears were out of balance. The helmet made steps toward correcting these anomalies. However, I don't know of any studies that indicate plagiocephaly can cause motor difficulties due to the lack of balance.
Washington, D.C.: I know we can't force our children to be perfect and the fun is sometimes in the imperfections, but I think some people are taking this too seriously. It really reminded me of braces -- except this didn't sound nearly as painful! (anyone who's had a monthly tightening knows what I'm talking about) People shouldn't get quite as fired up about decisions other people make for their children.
James V. Grimaldi: We wrote this story to share with people how we made our decisions and hopefully help other parents. I learned a long time ago not to question other parents' decisions about their children.
Wilmington, Del.: Wow! This story surely hits home. My son, ten months old, got his StarBand helmet one week ago. Our story is so similar to the one written. Often we wonder if we are doing the right thing. He is adjusting beautifully to the helmet, a lot better than his parents. We think that it will be worth it in the long run. Thank you so much for telling your story. The part about Charlie Brown gave me a good laugh.
James V. Grimaldi: Good luck with your Charlie Brown.
Washington, D.C.: Can you go into a bit more detail on the physical therapy Xavier received? I've been doing exercises at home with my baby for three months to help alleviate his torticollis, and it's somewhat better but still there, and his head is still lopsided. But so far, my pediatrician has not recommended outside treatment, so I'm wondering how much it helped you. And to the casual observer, does your son's head look totally normal now?
James V. Grimaldi: Physical therapy was incredibly helpful. We went to a wonderful clinic near Sibley Hospital. It helped make sure that his neck was being stretched out -- but also helped train us on how to do it properly at home.
And, yes, to a casual observer, his head looks totally normal now.
West Chester, Pa.: My son wore an orthotic helmet for nine months. I agree with your comment that it was hot and smelly. We are so happy that we had him wear it. Michael was born with a perfectly shaped head, but his head was very soft and after a few months was very misshapen. His head was shaped like a diamond with the right front and left back as the points. Now, at 17 months, he has a perfect head. We felt very lucky because our pediatrician sent Michael for an evaluation when he was only four months old and he got his helmet at 4 1/2 months. Pediatricians need to be aware that the earlier they send children for screening, the better the result will be. We also have friends that did not choose to have their sons head reshaped and they are sorry now that it is too late. Thanks so much for bringing this to the attention of the public, and, especially to more pediatricians.
James V. Grimaldi: I hope pediatricians read this, too, and refer to the guidance from the American Academy of Pediatrics, which issued a bulletin advising therapy, repositioning and consideration of helmeting for severe cases that do not respond to repositioning.
Washington, D.C.: Our son was diagnosed with mild plagio and, after consulting with a plastic surgeon who specializes in evaluating such cases, decided not to get a helmet or band. But I think about that decision every day. I still think we made the right choice for our son, but I confess to staring at people's foreheads, looking for assasymmetriesd admiring the smoothness of some people's noggins. Thanks for bringing this to light and sharing your family's experience.
James V. Grimaldi: With a mild case, it sounds like you made the right decision to me. But, yes, you'll never look at another person's head the same again.
James V. Grimaldi: I got a message that I will edit here because I don't know the insurance company's side of the story. But here is what one reader from Falls Church, Va. writes:
"I thought I'd post a few things my wife and I got upset about during our experience with getting a band for our daughter:
"1. Our daughter was preemie, weak (i.e., slept all the time for the first two months), and stuck in a funny position in the uterus, and pretty much immediately had torticollis. In short, most of the warning signs for plagiocephaly. Why didn't someone tell us in advance? We could have done a bunch of things with placement those first few months, but by the time we noticed the plagiocephaly it was too late.
"2. Insurance: We started the physical therapy first, and within a month sent in requests to our insurance concerning it. It took them five months to rule that they weren't going to cover it -- by that time our daughter was nine months, already reaching the point where bones were fusing. They wasted a lot of possible fixing time. How can that time get fixed?
"3. Insurance 2: ... [The insurance company] ended up not paying for it -- we paid the $3000 for the Cranial Tech band ourselves. [The insurance company's] ruling was that it was not quite severe enough -- our measurement was 11 mm off and they needed 12 (I think your son measured 13). But one eye looked off to the side and her ear stuck out by 30 degrees -- e.g., things that were really out of the ordinary and not acceptable. I mean, we had to do it, there wasn't any choice. I think that the insurance business has to have a more realistic description of the rules for paying.
"How do you think some of these things can be changed?"
I'm sharing this edited email because this is part of the decision-making process that parents go through on this procedure. Our company adopted a reasonable process that echoed what the AAP recommended. How to battle insurance companies is the topic of another debate.
Vienna, Va.: Excuse me while I scream! I am an RN who has 27 years of experience in NICU and am now involved in various perinatal issues one of which is doing home visits for families who have lost babies to SIDS. I just attended a National SIDS conference this past weekend. Babies MUST be placed back to sleep, never on their sides. NOTHING should be in the crib but the baby -- no soft bedding, blankets, pillows and certainly not any head positioners, head supports, wedges etc. I appreciate the info on plagiocephaly in the fact that I facilitate many new parent support groups. However, we cannot condone side lying positions, head pillows, etc., without increasing deaths due to suffocation and SIDS. Please check the AAP guidelines on Back to Sleep.
James V. Grimaldi: Thanks for your comment. Anything you do should be in close consultation with your pediatrician.
Boston, Mass.: You said that you were "running out of time." What age is too late to fit an infant with a helmet? My son is eight months old.
James V. Grimaldi: It depends on your child. It is not too late for you. Generally, most of the major growth spurt occurs in the first year. That's the optimum time for use of the helmet.
Covington, Ky.: I wanted to let you know that my first husband (non deceased) had Sagittal Craniosynostosis. However, he was born in the early 1950's. The solution then was to cut the sagittal suture out. It did the job however, his head developed a blunted football shape that followed him all his life. When he was young his father forced him to wear a burr haircut making everything visible. When he was older (and the 70's happened) he grew his hair long which helped to mask a great deal of the symptoms (but not all).
We were high school sweethearts, and he was one of the sweetest kindest people I have ever encountered. It was a constant source of embarrassment to him, however. I want you to know that what you did for your child was defdefinitelyblessing for him in many ways.
Time marches on, as does technology, thank god.
James V. Grimaldi: Thanks for sharing your story.
Centreville, Va.: As the parent of a child who had surgery to correct a skull deformity caused by craniosynostosis, I would have liked to have seen a little more information on that condition. Mainly so that parents are more aware of the condition. When my daughter was born, I simply thought her head was misshaped due to travelling through the birth canal. It was not diagnosed until several weeks after her birth.
James V. Grimaldi: This is an important story about looking at your child's head shape. The first question is whether the infant has craniosynostosis, a rare but very serious problem that must be addressed quickly.
Kansas City: I never realized why pediatricians and their nurses take such care to measure the heads of infants until my second son was diagnosed with craniosnyostosis at four weeks. It is a shock to think that your child could end up with a distinctly misshapen head, even if brain function wouldn't be affected. We were lucky that our pediatrician diagnosed the condition early enough to schedule surgery at 12 weeks, followed by a DOC Band for six months. Apparently, some doctors have in the past urged a wait and see approach -- if the condition is caught early enough, you gain time with molding the head during the critical growth months of the early years. While an anxious time, I feel blessed that this condition is correctable and normally without long-term side effects. We loved our helmet!
James V. Grimaldi: The current thinking is to try repositioning -- placing your supine child with the head on different sides of the crib -- and "tummy time" to see if that corrects the problem. But, yes, the sooner you start treatment, the better. Still, a helmet makes sense primarily for severe cases.
Raleigh, N.C.: I am concerned, as others have mentioned, at essentially the cosmetic nature of the procedure you described for plagiocephaly. I would suspect that Xavier is your first child though I saw no reference to that in your article. After watching several children grow and develop at different rates I would tend to agree with the doctors that believed the flattening will disappear over time. Both of my children had this problem as infants and grew out of it over time. Although I agree that under severe circumstances including early fusion that intervention is necessary, you do not know that Xavier would not have the same head today with or without the treatment. I do not agree that insurance should support this practice for cosmetic reasons. The pursuit of perfection is just being carried to the next level.
James V. Grimaldi: Xavier is our second son. Studies are mixed on what works best. You're right that we don't know the "what if" here. But at least we sleep better at night. I do not discount your point of view, however. That's what makes it a hard choice for parents.
Los Angeles, Calif.: The measurement differential for your son was 13mm. My son's was around 7mm. We elected not to go the helmet route because a difference of 3-4mm (what they said they could correct it to) is so TINY. I totally respect your decision, however. I think at the smaller measurement ranges, it's OK not to pursue the helmet. Two years later, I don't regret it.
James V. Grimaldi: Thanks for your comment. Now comes the tough part: Getting through the Terrible Twos.
Carlisle, Pa.: Our six month old has recently started rolling in his crib, and now immediately rolls to his belly when we put him down to sleep. No matter how many times we try to roll him to his back, no matter how deep of a sleep he's in when we try to right him, he's on his belly again in an instant. He's not good at rolling from belly to back, though we do encourage tummy time during the day and he pushes himself up with locked elbows. Should we be overly concerned with the latest development or be comfortable that he is out of the two - four month SIDS "danger zone" and be glad that he finds it more comfortable to be on his belly? If we swaddle him, he doesn't flip, so sometimes we swaddle him when we go to sleep for the night, but I'm worried that if he does manage to flip while swaddled, he'll have reduced defense against suffocation.
James V. Grimaldi: SIDS is a very real danger. You should pose your questions to your pediatrician. You should not risk the danger of SIDS to have a better-shaped head. However, you can have SUPERVISED "tummy time" with your child.
Washington, D.C.: I believe you that this is a widespread phenomenon, but why then aren't there multitudes of people walking around with oddly shaped heads? I understand that you didn't want your son to be teased, but I can't remember once in my 33 years ever hearing of a person being teased about the shape of his or her head, let alone having social or romantic problems because of it. Maybe I'm just ignorant of it, but if teasing, etc., was really a significant potential problem, wouldn't I have at least heard of it before?
James V. Grimaldi: The reason you haven't heard about it before is because it is a recent US phenomenon. The increase is generally linked to the American Academy of Pediatrics' SIDS warning in 1992 that children should sleep on their backs. Since the "back to sleep" advisory, the studies show an increase in deformational/positional plagiocephaly from 1-in-400 to 1-in-10. Most of those 1-in-10 are not severe cases. Severe cases are probably more like 1-in-40; but precise numbers about the severity of plagiocephaly are hard to come by because there is still a lack of awareness and because there are varying standards for taking the measurements.
Fairfax, Va.: My five-month-old son also has plagiocephaly. We were referred to a physical therapist and to Cranial Technologies for assessment six weeks ago, and decided to wait a couple of months to see if repositioning and exercises would help. His head has rounded out significantly in the last six weeks and we are going to re-evaluate. I must say I was surprised at the agressive approach taken by Cranial Tech. Even after I made it clear that we were going to wait a bit before making the decision to use banding therapy, they got approval from my insurance company to pay for the band, resulting in LOTS of back and forth with the insurance company on benefits we aren't even sure we need to use. I really got the impression they were pushing the bands, regardless of the need for them. It's a tough position to put parents in.
James V. Grimaldi: I can't really speak to your story. I do think that this is something you should discuss with your pediatrician as part of a careful analysis.
Bethesda, Md.: For the person in Boston, please read this about products related to infant sleep position.
Should parents or caregivers use products that are designed to keep babies on their backs or sides during sleep?
The American Academy of Pediatrics does not recommend the use of such products. Some of the devices are designed to keep babies on their sides, and there is now good evidence that side sleeping is not as safe as back. Other devices are designed to keep a baby on the back or to prevent re-breathing. But none of the devices have been studied sufficiently to demonstrate a decrease in SIDS risk. Furthermore, no studies have been published that examine the safety of these products; in fact, there have been some anecdotal reports of babies being trapped against bedding while strapped into products that keep babies on their sides.
Babies who sleep on their backs are very unlikely to roll onto their stomachs during the age range most associated with SIDS; therefore the use of products to prevent babies who are sleeping on their backs from rolling onto their stomachs is unnecessary.
James V. Grimaldi: Thanks for your comment.
James V. Grimaldi: Rockville, Md., asked if there are any guidelines or published studies for Pediatricians to follow?
Yes. The best summary I saw was an article in Pediatrics magazine, published by the AAP in July 2003 (vol. 112, no. 1) entitled "Prevention and Management of Positional Skull Deformities in Infants."
Springdale, Md.: I think your article was GREAT and very informative. My preemie son just had an appointment at Children's yesterday for torticollis. The RN and therapist concluded that he didn't have it -- just a STRONG preference for holding his head one way but emphasized that we should continue with his stretches and exercises (which he hates). They didn't mention anything about his head shape but this article just gives me another thing to be vigilant about, just in case. He was on a ventilator for almost two months so his head was always in the same position; when he first came home I thought he was fascinated with the ceiling fan, turns out looking up and back was just more comfortable for him. He has since improved slightly but it is definitely a day by day process. Thank you to you and your family for being brave enough to share and pay no attention to those who criticize when they haven't walked in your shoes!
James V. Grimaldi: Good luck with your son and PT. Our son hated it, too. (Think of that picture of him on the jump page in the paper today.) Because your son was in ICU, he is a strong candidate for positional plagiocephaly. Good to be vigilant.
Burr Hill, Va.: I, like you, have had the misfortune of having to deal with the heart break of plagiocephaly. I thank you for making the issue public, but I take offense to the description of Cranial Technologies in your article. I researched every angle and made the choice to use CT in Annandale because they are the best at what they do as far as I was concerned. Parents have to make their decisions by what is right for them, whether it be a DOC band or other orthotic. I think I put a little more thought into who would reshape my infant's head than what kind of Latte I want. You help by informing people so they can make the best possible choice for themselves not by making cheap comments about the one you didn't use.
James V. Grimaldi: There was no intention to put down CT. The Starbucks comment referred to the company's opening of numerous locations.
Gaithersburg, Md.: My son was diagnosed with craniosynostosis at six weeks which is almost too late to obtain good surgical results because the skull is growing so fast, but we did do the surgery and the result was not considered successful, but now that our son is a handsome 21 years old, with a full head of hair, its hardly noticeable. Unfortunately if and when he starts losing hair -- that will be another story!
My point is, therefore, is it necessary to go to drastic measures in those cases when its not medically necessary. When these children are small, everything is more noticeable, but as they grow, some things are overtaken by others. It's a tough call, we opted for the surgery and it was traumatic, but each parent has to make their own decision.
James V. Grimaldi: Thanks for your thoughts.
James V. Grimaldi: Thanks for the participation in this chat and strong feelings expressed. Good luck to everyone who faces this choice. This is really a case where there is no right or wrong answer. We hope that our article -- and this chat -- makes it a more informed decision.