Friday, August 26, 2011

Head Shape, Helmets, and Hope

When we found out we were having twins, we were beyond excited.  When we found out we were having a boy and a girl, we were elated.

Two of everything.  One pink.  One blue.

Instant family.  Total cuteness.

We were so excited, but we were also scared.  We knew that twins face a higher risk of being born premature, have a low birth rate, and are more likely to have health problems.  Our doctors kept telling us, and preparing us for different scenarios.  As each week of the pregnancy went by, we relaxed more and more.  Then the babies were born and were a good size!  Rhett weighing 6 pounds, 11 ounces, and Rhys at 5 pounds, 7 ounces.  They were healthy and did not have a NICU stay like most twins do.  We were so relieved and thankful that we were able to bring them home just four days after they were born.

We thought that all these "risks" of having twins were behind us.  Unfortunately, we were wrong.

At the babies' one week appointment, our pediatrician noticed some tightening in Rhett's neck muscle and gave us some exercises to do with him to stretch it out.  She was not concerned, we were not concerned, and we did our "homework."  At the next appointment, she noticed that he was favoring his left side and gave us some repositioning exercises to do.  So, since Rhett liked laying on the left side, we would gently turn his head to the right and prop it with a rolled up blanket.  It was easy enough to do.

As Rhett grew and got stronger, it became more difficult to keep him off of his left side.  He would knock over anything we would use to prop his head.  At his 2 month check-up, the pediatrician encouraged us to keep doing the stretches and told us not to be concerned, that these things usually work themselves out.  I was beginning to become a little concerned because I noticed that his head looked a little flat on the left side.  We continued to do the exercises as often as we could.  Here are some of the pictures I took so that we could compare later on...

At the 4 month check-up, our pediatrician gave Rhett a diagnosis of Torticollis, which is a tightness of neck muscles, as well as Plagiocephaly (abnormal head shape/flat spot).  He referred us to a Physical Therapist to start treatment for Rhett.  He said that we would check his head shape again in a month and if improvement had not been made, we may have to get Rhett a helmet.

We began therapy immediately and immediately saw improvement.  At the beginning of treatment, the therapist noted that Rhett only had 25% range of motion on the left side.  We were going to therapy twice a week, as well as doing the exercises at home on the other days.  After a month of physical therapy, we had a follow-up with the pediatrician.  We were almost certain that he was going to tell us that Rhett needed a helmet.  At the appointment, however, he noticed the improvement as well and wanted to watch him for another month or so before sending us on to a specialist.  He did say that we could go and get another evaluation if we wanted to.

I left that appointment feeling uneasy.  Rhett had made great improvements with his range of motion, but it also seemed that some things were getting worse.  His left cheek was fuller.  His ears were not even.  The flat spot (plagiocephaly) was getting worse.  I love our pediatrician, but wanted to get a second opinion.  We had been working with 2 different physical therapists so I called them.  I asked them what they thought about pursuing a helmet or waiting.  Both of them encouraged us to go on and get an appointment.  One of the therapists said, "If it were my child, I would run to see an orthotist."  That was all I needed to hear.

We did some research and found that the *best* place to go would be in Austin.  There are companies in San Antonio that market the cranial bands, but their products are heavier, not as custom-made for each child, etc.  Since Rhett has the torticollis, a lighter helmet would make it easier for him to continue working on his neck muscles, while reshaping his head.  We decided to go with the DocBand.

 Here is what the cranial band (helmet) looks like

it only weighs 6 ounces!

We had a great appointment at Cranial Technologies in Austin this past week.  We love our therapist, Amy, and appreciate their honesty and care.  We found out that Rhett has a severe case of Plagiocephaly.  He will need one, and possibly two different helmets to reshape his head.  He will be wearing the helmets anywhere from 2-6 months, and possibly longer depending on how he responds to treatment.  

Amy did a quick check of Rhys' head shape while we were there

Here are the pictures that Cranial Technologies took of Rhett.  Sorry the quality is so poor....I couldn't get the scanner to work, so I took a picture of the picture with my phone.  

 You can see the increased head height on the left
 Again, increased head height on left
 sloped forehead

 left occipital flattening; right frontal flattening
left eye and cheek anterior to the right

I have had a lot of guilt over these issues the past couple of months.  I kept thinking, "If only I had done more stretches with him.....If only I would have turned his head more often....If only I did more tummy time with him....etc."  The therapist that did Rhett's evaluation told us that Rhett has a classic case of plagiocephaly caused by restriction in the womb.  Having multiples or a small pelvis contributes to this.  Basically, Rhett was head down in the womb for most of my pregnancy.  Rhys was standing on him.  (She will love to hear about that one day!)  So, the pressure from her pushing him down, as well as my pelvic bone pushing against his head is the cause of this.  They told us that no amount of repositioning or stretching would have corrected this.  While I am not glad that Rhett has to go through this, I am relieved that it is not my fault.  Cranial Tech works with a lot of multiples, and usually Baby A (like Rhett) is the one with the condition.

Rhett in the elevator leaving....he always crosses his feet like this.  So funny!

Would you pray for us?  I know there are many parents out there fighting for their child's life, and this is nothing in comparison to what they are going through.  We have a "fixable" problem.  So I don't want to complain!  To be honest, though, it has been hard.  Especially for me.  I sometimes worry that I am not giving little Rhys the time and attention she needs.  Rhett's therapy takes a lot of time and energy. Oh, and we will be traveling to Austin weekly for appointments.  Would you pray that the babies are each getting what they need from me?  And pray that I will have the energy and love to shower on them.  And that Rhett will adjust quickly to his new helmet?  I know that is a lot of requests....I know there are a lot of prayer warriors out there who have already been praying for our little guy.  We appreciate you and have hope and trust that God will see us through this.

Here is what is going to happen next:

Monday, August 29th:  Rhett will have imaging done to measure his head (check the Cranial Tech website to see how they do's really high tech!)

Monday, September 12th:  Rhett will get his first band on!  He will wear it for a few hours and then they will check him again, make adjustments, etc.

After that:
*Rhett will wear the band 23 hours a day (off for bathing and cleaning of band)
*Weekly appointments for adjustments in Austin (as Rhett's head grows, the band will need to be adjusted)
*Weekly physical therapy appointments
*Daily physical therapy with mom and dad
*A possible 2nd fitting and helmet in 2-3 months

I will keep you all posted on Rhett's progress through the blog.  Thank you in advance for your prayers! 

P.S.  Of course, if Rhett has to wear a helmet, I have to make it cute.....starting to brainstorm designs now....any ideas?


  1. I'll be praying-for all of you!

  2. So thankful for all the technology that allows the head to be re-shaped. I remember Corban's head being cone shaped from being in the birth canal so long. Praying for all of you as you work through the therapy. Beth and Steve

  3. We will be praying for you too!!! We have a friend at church that is going through the same thing right now and I think she is having the same emotions. So glad God is in control and Rhett will never remember any of this happening. Sounds like you will be using your super mommy skills for a while! I will be praying for you!

  4. Misty, all four of you have been, and will continue to be, in my prayers. I am so happy to hear that you have found experts in the field of treatment for cranial problems. One day you will be able to look back on these stressful times, and see that God was guiding you every step of the way. I love you guys so much...kiss those precious babies for me!

  5. Continuing to pray to the Great Healer who made Rhett from the beginning and knit him together in your womb. Love you and praying for all of you!

  6. Oh, mother guilt! I wish I could tell you that it gets better but I can't! I figure that is part of being a mom. Try to ease up on yourself, especially where Rhys is concerned. I haven't gotten to see you as a mother, but I know how loving you are. She will feel that every moment of every day! Even on the really hard days. Right now it is Rhett that is needing extra attention but at some point in the future it will be Rhys. It kind of goes back and forth. All 3 of mine are pretty good about letting me know when they are needing a little extra attention. Rhys probably will, too. On those really hard/exhausting days, don't worry about your entire to-do list, just focus on doing the next thing. And, give yourself some credit. You are an amazing mom and those babies are truly blessed to have you! I will be praying for you and those precious babies.

  7. My thoughts & prayers go out to you & your family. May God be with all of you through this roller coaster journey. May the Lord give all of you the strength, peace of mind, & lift off burdens! Rhett will be just fine because he has an awesome mother & father who love him & will take action at a blink of an eye. Your doing a great job as parents! Your not alone! You have our creator & Lord & Savior Jesus Christ on your side to guide all of you!

    God Bless,

  8. My friend Tricia gave me your blogspot address because my sweet 6 month old, Ava, has to have a helmet because she too has torticollis and her head looks remarkably like Rhett's! She favored her left size as well and we noticed it within the first week of her life. We started therapy at 1 month and have been doing it since to correct the torticollis. She has made great improvements as well, but she still has the flat head on the left and all of the same asymmetries your son has. We get her helmet put on tomorrow and I am feeling very nervous. I know she will adjust to it all, but I am sad about not being able to snuggle up to her soft little head. I will be praying for you as you go through this difficult and new experience with Rhett. I pray for God to comfort you all and give you peace. May his head be corrected quickly and may he adjust smoothly. Take care and know you are not alone in this. God Bless!
    In Him,