The Cranial Therapy Centers Blog

Interview With a Parent Of a Baby With Plagiocephaly

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I have read and heard interviews online with mothers of helmet babies, however, until now I have not had the privilege to speak to someone, I know well whose baby wears a cranial helmet. When my sister told me that her daughter, my niece Rachel was in the process of having her baby, Mikey, fitted for a helmet, I was enthusiastic about the possibility of actually hearing the side of the story of a close relative. After texting Rachel and getting the go ahead we set up a time for a phone interview. Here it is and I hope that any parent who is in the helmet buying process will find this conversation useful and reassuring.

Does your baby wear a DOC Band® or STARband helmet?

The STARband helmet is what Mikey was fitted with. It fully covers the baby’s head except for the top where there is a large circle cut out.

Why did your therapist choose the STARband helmet over another type like the DOC Band®?

There are several different products available for reshaping the condition called plagiocephaly or flat head syndrome. There must be adequate control over the bulging while at the same time the helmet should be able to have enough room for growth in the area where the head that is flat. Since the STARband helmets cover more area than other helmet brands for example, the DOC Band®, my baby’s cranial specialist recommended only the STARband Helmet. The STARband is a full helmet with a space on top of the head. The DOC Band® is lighter and smaller, however, for a moderate to severe condition, the STARband is the way to go.

Was your baby born with this problem or did it develop later?

My baby was not born with plagiocephaly. Mickey was in the hospital for three weeks after birth for a correction of a heart issue. My husband, Morty, was the one who noticed the flatness initially, when he remarked that the baby’s head looked flat. A few weeks later I also noticed he was starting to hold his funny. This happened at two months of age. At our monthly doctor checkup, I mentioned and showed it to the doctor who took measurements and he said we should wait until the next month. Each month his head was measured, and we were not advised to do anything until he was four months old and the doctor sent us to the Hanger Clinic where Mikey was fitted with a STARband helmet.

Where exactly is the plagiocephaly located?

The flatness is in the back of the head on the right side.

What was the diagnosis in terms of severity?

There are stages of plagiocephaly severity, mild, moderate and severe. Mikey’s plagiocephaly was on the lower end of severe. I do not know in terms of exact numbers what it measured.

Was it challenging for you to put on the helmet the first time?

No, surprisingly it was routine.

How did the cranial therapist fit your baby for the helmet?

A stocking type of covering was put over the baby’s head and ears. He was seated in a Bumbo® Floor Seat and the scan began. The scanner is like a supermarket scanner and the results popped up on a screen in 3D. Then someone measured his head with a wooden ruler type of instrument like a clamp.

Is this situation hereditary?

No, plagiocephaly hereditary was not determined. As I mentioned, it could be possible that since he was in the hospital for a three-week period and kept mostly in the crib that it developed because of that.

Did the cranial therapist give you a time frame of how long your baby must wear the helmet?

We were given the time frame of three to four months. Hopefully, before his first birthday it should be removed.

How many hours a day does your baby wear the helmet and are you allowed to remove it for more than bath time?

We were instructed to keep Mikey in his helmet for twenty-two hours a day. I remove it in the morning when he wakes up and in the evening at bath time.

How is he sleeping?

Surprisingly, we do not have a problem. I find that he sleeps more on his side since getting his helmet.

Do you have a problem with the baby sweating? If yes, what do you do for it?

So far, he has not had a major problem with sweating (the weather is cold now). The first week was worse and I was warned that this would happen and now it is not bad at all.

Is the helmet decorated? If yes, how did you decide on the pattern?

Yes, the helmet is decorated as a Yankees batting helmet. It is dark blue with the white Yankees emblem on the front.

Does it cost extra to have the helmet decorated?

Not for me since I decorated the helmet myself. We asked for a dark blue color, but it ended up coming in light blue. We sanded it with sandpaper and checked online to find out which paint to buy for a shiny finish. We used acrylic paint in a dark blue Yankee color. After the paint was dry, I decaled it with the Yankee logo. Then I covered it with Mod Podge®. It took us about two hours to complete the job. The time frame was one half hour for the paint to dry and another half hour for the mod podge to dry. So, including the sanding, painting, and covering with Mod Podge®, it was about two hours of work.

How do you wash the helmet?

I use the same soap that I use for Mickey, JOHNSON’S® Baby Wash. The baby helmet gets washed every night. In addition, about two to three times a week it gets sprayed with a mixture of equal parts alcohol and water.

What did your older children say the first time they saw the helmet on your baby?

They were disappointed that the helmet was light blue in color since we were told the lab may have the dark blue color. Once we decorated it, my two boys (three and seven) think it is the cutest thing and proudly show it to their friends. Initially my three-year-old started kicking him the first day since he knew it would not hurt.

Are you able to adjust the helmet yourself or must you go to the therapist to adjust it? If yes how often?

The therapist must adjust the helmet for the first time at two weeks, after that it is monthly. The first week that Mikey had the helmet I realized that it was rubbing against his cheeks and causing a rash. I went back to the cranial therapist and they shaved down part of the foam on the inside of the helmet.

Is your baby getting physical therapy in addition to the helmet?

I just applied to get Mikey evaluated even though both my doctor and therapist advised me that no additional physical therapy was necessary. They clarified that if he is meeting all his milestones appropriately, he is good to go.

Do strangers ever stop you to ask about the helmet and what are some comments that they make?

Someone asked me if these baby helmets are for kids who are autistic. The fact that the helmet is decorated makes it less serious.

What about people you know? Did you tell them about the helmet before?

Yes, I did.

Is there anyone who makes silly remarks like, why do you need it? Let nature take its course?

No, thankfully all were on board.

How often do you do tummy time with your baby?

I do tummy time for a lot of hours a day. Before we got the helmet I put away all the types of gadgets, like the bouncer and swing, which would restrict the baby’s vestibular movement.

Are there any home exercises that the therapist instructed you to do?

No, basically tummy time and thankfully Mickey is quite cooperative. Mickey has quickly adapted to his helmet and uses it in play. For example, he has a musical cube toy which stays on the floor during tummy time and he started butting his head into the toy to make the sounds from the buttons. He also got used to rolling over hard so when he is not wearing the helmet, he can bang his head. He is very brave and will soon learn to differentiate when he is wearing the helmet and when he is not.

Conclusion

Before hanging up the phone, I thanked Rachel for her time and I now have a totally new perspective on corrective helmeting. This family took a serious issue and made it into a family project and had fun doing it. By including your other children in the care of their helmet baby, a lot of the hassle and pressure will be removed from the parents. Older children can be asked to hold the baby and supervise tummy time as well. For a few months of hard work, you will have a lifetime of a child with a normal shaped head. This is so important in these times of bullying and name calling that can happen when a child looks different than their peers. I also was impressed that Rachel did not take the words of the therapist and doctor regarding additional therapy, but she scheduled an evaluation on her own. Remember it is usually a family member who notices plagiocephaly first and not the doctor.

Cranial Therapy Centers is the only early interventions cranial center in the United States which provides both helmet and manual therapy treatment. We are American Board for Certification in Orthotics, Prosthetics and Pedorthics Facility. Visit us in Lakewood NJ, at 1352 River Ave Unit 14, Lakewood NJ, 08701 or in Teaneck NJ at 1086 Teaneck Road Suite 3F, Teaneck, NJ 07666. You can also email us info@cranialtherapycenters.com

If you think that your child may require treatment, please contact us