My Twins and Their Plagiocephaly Helmet Story

My Twins and Their Plagiocephaly Helmet Story

This story was shared by a mother of beautiful twin girls and details their experience with plagiocephaly, torticollis, and helmet therapy. Plagiocephaly is very common in both twins and premature births.  She shares some great information and tips, and a series of photos taken before, during and after the helmet therapy.   Thank you so much for sharing!

From Mom:    

I have twin girls that suffered from plagiocephaly and experienced helmet treatment.  Here’s a brief version of our experiences with the torticollis, plagiocephaly, and the helmets.

The girls were born six weeks early and spent some time in the NICU.  By the time the girls were two months old, I noticed that their heads were pretty flat.  I pointed it out to their pediatrician, and she agreed that we should take the girls to see a plastic surgeon for evaluation.

At our first visit to the plastic surgeon, a physical therapist was also present.  The physical therapist identified that both girls had moderate torticollis and should receive physical therapy treatment.  We were taught some basic stretches to perform at every diaper change to help with the torticollis.  The plastic surgeon identified that the girls had moderate to severe plagiocephaly (measurement of 14mm and 15mm).  Additionally, the plastic surgeon taught us some repositioning techniques, such as lots tummy time and pinning a rolled up receiving blanket (I preferred Velcro; pinning made me nervous!) under their shoulders at night to help the girls sleep on the non-flat side of their head.  We scheduled a visit for five weeks later.  Below is a photo of how their heads looked at the time.

pic 1 sherry

                We returned five weeks later after using the “aggressive repositioning techniques” (tummy time, making sure that the girls never had pressure on their flat side, etc.).  Upon evaluation, we could see that the repositioning was helping and that the heads were starting to become rounder.  We scheduled another follow-up appointment to assess the improvement after an additional month.  At this appointment, we found some slight improvement, but not enough to avoid the helmets.  We were given a prescription and the name of the local orthotics company to start the process of getting the helmets.

We scheduled an appointment with the orthotics company.  The girls were about five months old at this point.  The girls each received a 3D head scan, from which the helmet company would form the helmets.  A few weeks after the scan, we received the helmets.  Their grandma helped me decorate the helmets with stickers, mod podge, and a Velcro flower than we could change to match their outfits.

When we first received the helmets, we had a “weaning schedule” that we had to follow.  After this, the girls wore the helmets for 23 hours a day with an hour break, where I washed the helmets and bathed the girls.  We had helmets during the summer months, so keeping the helmets clean was very important!

We ran into a few hurdles with eczema and the helmets not fitting appropriately in the beginning, but once everything was straightened out, the helmet process was pretty smooth.  The girls wore their helmets for three months, and at the three month point, we went for another 3D scan to assess the overall improvement.  One girl’s head started out at 9.4mm difference and improved to 5.7mm.  The other’s head started at 13.3mm and improved to 9.7mm after the three months.  I was slightly disappointed with the improvement because I was diligent with the girls wearing the helmets for 23 hours a day, and I prepared myself to have to continue treatment with the helmets.  Though the “shape” of their heads looked much improved, the numbers weren’t as good as I had hoped, in comparison to what other parents have seen from their children’s experiences.

We visited the plastic surgery department following the scan, and they were extremely happy with the progress, which I was very surprised.  They said that one girl’s helmet could definitely come off and that the other’s continued treatment was at our own discretion.  She said that the most improvement occurs after the first three months of treatment and that we would not see much improvement if we continued.  So we left her helmet on for a few days, and after giving it more thought, decided to take it off.

While the girls were wearing the helmets, I took photos every week to document the progress.  I’ve compiled the photos from every few weeks for each girl to show the progress at various points during the treatment.   The photos show that the girls’ head shapes were much improved, despite the measurements.  I feel that, since we were unable to get enough improvement through repositioning techniques, the helmets were very beneficial and worthwhile.

sherry pic 2

 pic3 sherry

Comments

  1. I enjoyed this story; I loved the helmet decorations and the weekly photos. Good job :)!

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