Melanie Cole (Host): Welcome. Today, we have a panel style discussion and we are discussing two very important topics. Non-surgical craniofacial interventions, helmet therapy and ear molding for congenital ear anomalies. My guests today are Patty Engebretson and Marisa Foss. They are both certified nurse practitioners with Shriners Hospitals for Children – Chicago. Patty, I would like to start with you. What’s the prevalence or incidence of ear anomalies and positional plagiocephaly or brachycephaly, things that might require helmet therapy?

Patricia Engebretson, MSN, APN, CPNP (Guest): For ear anomalies you are looking at anywhere from one in six thousand which is approximately 19% of the population and for plagiocephaly and or brachycephaly, those results are varied roughly 46% and that’s at age seven to twelve weeks.

Host: Patty, what’s different today about what we know about these conditions?

Patricia: Ear anomalies are recognized early enough to be treated nonsurgically. In the past, they were often overlooked by primary care physicians and for plagiocephaly and of brachycephaly there is an increased incidence due to the Back to Sleep campaign where parents are recommended to put their babies on their back side to sleep in order to decrease the incidence of SIDS or sudden infant death.

Host: Marisa, as she mentioned that things like Back to Sleep have helped with SIDS and things, but how are they contributing to the diagnoses that we are seeing?

Maris Foss, MSN, APN, CPNP (Guest): Well infants heads at that stage of their lives are very pliable, moldable. They haven’t formed into a solid skull yet and so, they are very amenable to the positioning affecting the shape. So, we see fairly commonly that infants who are placed on their back to sleep will end up with a flat back of their head or if they tend to favor turning their head to one side or the other; they might have an asymmetry to the shape of their skull.

Host: Marisa, sticking with you for a minute, how important is time sensitivity for interventions for either one of these things?

Marisa: Well, for the EarWell molding, we prefer to start ideally by about two weeks. We have a window of about – until about six weeks of age where the babies still have their mother’s hormones in their system and so their cartilages are more pliable and so we have more influence over how the cartilage will solidify and so like I said, ideally, we would like to start with the EarWell by about two weeks of age and certainly by no later than about six weeks of age.

With the plagiocephaly and brachycephaly or the flat or asymmetric skull; we ideally wouldn’t start before six months of age because the prevalence is so common at that point and the babies are still developing and can potentially correct with their normal growth and development. So, we would not start before six months of age, but that said, if the problem is going to persist, we would want to treat before about a year of age.

Host: Patty, let’s start with discussing ear molding as we separate these two situations and conditions that little babies have. What are the most common ear anomalies that you see, and do we know really what causes them?

Patricia: As far as the cause is concerned. No. Sometimes we will see patients who have a sibling who had a similar ear shape anomaly and so you can see it running in families. But usually, it’s a change in the shape of the rim of the ear where it might appear more pointed or more rolled over in appearance and so those are a lot of the conditions that we treat with the EarWell mold.

Host: Patty, do these conditions put the child at risk for hearing loss? How do you reassure the parents about hearing and development with or without treatment?

Patricia: That’s a good question. I don’t know of any associations with hearing loss with these ear anomalies that we are treating with the EarWell molding. Certainly, all infants have hearing testing at birth and that is one of the questions we ask the families when they first come in is if the infant passed their newborn hearing screen. If there were any concerns such as the child doesn’t startle to loud noise, that would be an indication that we would refer them for additional hearing testing.

Host: Marisa, tell us a little bit about the benefit of early intervention for the ear deformities and do you hear parents say that they were told to wait to see if the ear fixes itself? What do you want them to know about that, if that’s what they’ve been told by a pediatrician and then I’d like you to tell us about the procedure. What is EarWell?

Marisa: Sure. So, that is a great question because many of our parents say exactly that, that their pediatrician advised them to watch and wait and that’s not bad advice because oftentimes as the baby grows and changes, there can be some resolution of the – whether it’s like Patty said folding or lack of definition of the ear. But it certainly doesn’t hurt to come in and get checked out and given that the ideal window of treatment is prior to six weeks of age; the earlier we can start, the more effective the EarWell treatment can be. So, we always encourage families to come in if there is any questions. Come in right away. We have seen babies as early as certainly within their first week of life and started treatment.

The side effects or the drawbacks of doing the EarWell molding are so mild that we feel that it’s worth giving it a try. Those side effects being the possibility for skin breakdown or the appearance of the EarWell molding. The EarWell itself, consists of a cradle that is adhered to the baby’s skin surrounding the ear. It is made out of silicone and then we have little pieces of silicone that wrap around the rim of the ear. We call these retractors and they are adhered to the cradle and hold the ear in the shape that is desired, and we always work closely with parents to have them look at the positioning of the ear before everything is – before they are sent on their way just to make sure that they are comfortable with the position that we are going for.

And then the cradle has sort of a cap on it and so that holds the retractors, holds the position that we’re striving for. Those typically will stay in place for about two weeks. Again, there’s a little bit of variability there based on if the child is particularly sweaty, but generally about two weeks. Treatment time will vary based on the individual. Generally, we are seeing the kids back at that two week mark and we will assess at that point how the ear is looking and whether we feel a second or even in some cases, a third EarWell mold is warranted and would apply at that point if so.

Host: And what have you seen as far as outcomes and satisfaction? What have parents said to you Marisa?

Marisa: They – the satisfaction rates are high. Parents at the very least, even in cases where we don’t see that much change; they are happy that they at least tried something. And overall, for the most part, we do see positive change, so they are happy in the changes that they see in their baby and that they hopefully potentially avoided a surgery down the road. That’s certainly the main benefit of trying the EarWell therapy.

Host: Patty, now we are going to talk a little bit about helmet therapy. We’ve all seen those adorable little babies with the helmets on and we mentioned that Back to Sleep has contributed as the babies’ heads are growing. Tell us a little bit about helmet therapy, the best age for a baby to begin wearing that helmet, the initial process. Tell us a little bit about it.

Patricia: Sure. So, the way the helmet works is it fits snug to the areas of the head accept for the area that is flattened where it has a little bit of a pocket there for the head to fill out. So, it doesn’t actually change the shape of the baby’s head as much as it guides the growth of it. And so, since the head is rapidly growing in the first year of life; the ideal time to start this is at about six months. And so, babies that come in at that age, if they have already tried some positional changes for example more time spent on the tummy while awake, less time spent in the infant carrier or the bouncy chair, those types of things and the parents have not had any success with improvement in the head shape; then we will likely do what’s called a Star Scan which is an outline of the baby’s head that determines if they qualify to receive a helmet. And so, six months is the ideal time for that, although certainly, we’ve had infants as old as 12 months.

Host: Marisa, does this baby need to wear the helmets all day? Is it uncomfortable for them or is it more uncomfortable for the parents watching their baby wear a helmet?

Marisa: That’s more the case. The babies we find end up getting very comfortable in the helmet to the point where when it’s removed to bathe or get dressed, the parents report to us that the babies will reach for it. The babies are – we try and have the – encourage the parents to keep them in the helmet 23 hours a day or so and just remove it for bathing and letting the head air out and cleaning the helmet. It can get sweaty in there and so that’s probably the biggest complaint with the helmet is that the babies heads get quite sweaty and it can get a little stinky. But otherwise, the babies tend to be quite comfortable and parents even that start off a little hesitant, they find that they kind of come to like the helmet as well. They get nervous when the babies are starting to walk and don’t have their helmet so, overall the helmets tend to be very well tolerated.

Host: Patty, tell us how an orthotist fits the baby for the helmet and how can a parent tell if it’s working?

Patricia: So, I mentioned the Star Scan which is the scan that gives us an outline of the head shape and that is what the orthotist uses in order to create the helmet and we repeat that scan every four to six weeks when the baby returns to the office and that’s a really good indicator that the helmet is working per se, because you will see an improvement in the flattened area of the head. And so, it’s something that we can all take a look at to see that this is helping. And also, we rely on the parents view of the child and they see them everyday and can see that the head shape is improving.

Marisa: And Melanie, I would like to just add that the Star Scan, parents worry about exposing their child to radiation and the Star Scan involves a laser, kind of give us a picture of the surface area of the skull. It does not involve any type of radiation so, it’s very safe.

Host: Thank you for pointing that out Marisa, so, I’m going to give you the first last word. What would you like parents to know about these nonsurgical interventions that are available for whether or not the kids have plagiocephaly or brachycephaly or ear anomalies. What would you like them to know about coming to Shriners Hospitals for Children in Chicago to get that opinion to find out what can be done?

Marisa: I would just like to remind parents that when in doubt, bring your baby in. The appointment is quick and painless and it’s always better safe than sorry. We are happy to see kids and if the child doesn’t need the treatment, then great. If they do, then better earlier than later. So, when in doubt, bring your baby in.

Host: Patty, last word to you. What would you like parents to know about these interventions?

Patricia: These are recommendations so the families can come here to get the information from us about what is available and what we would recommend for the child, but ultimately, it’s the family’s decision and we certainly have families who choose not to proceed with helmet therapy or EarWell molding and that’s okay too. We are here to provide them with the education and the recommendation that they are looking for.

Host: Thank you both for joining us today and explaining these types of interventions that are available and clearing that up for parents. Thank you again. This is Pediatric Specialty Care Spotlight with the Shriners Hospitals for Children - Chicago. For more information, please visit www.shrinerschicago.org, that’s www.shrinerschicago.org. This is Melanie Cole. Thanks so much for tuning in.