Heather's Story

Heather was diagnosed at 3 months old with Torticollis. We had questioned our pediatrician from birth as to why her head seemed to be "stuck" to one side. We were told that it was tight and would loosen up on it's own. When Heather was around 3 months old, she saw a different pediatrician who immediately asked what was being done for her Torticollis and Plagiocephaly. We were given a referral to get her into Physical Therapy and also were given a referral to take her to see a Neurosurgeon. The Neurosurgeon saw her within the month and said she had severe plagiocephaly, but was too young at this point to wear a helmet. He told us how to begin repositioning therapy. He told us to come back when she was 5 months old to be fitted for a helmet.

She got her Starband Helmet at 5 months old from Nopco in Boston. She had some fit problems with it and our ortho made her a new one that still didn't fit her correctly. We were then sent to R.I to Hasbro Children's. They made her a starband and we saw some correction. Then we were told by them that she was getting "too old" for them to help her. We decided we would travel out of state to Cranial Technologies for treatment. She was cast for a Doc Band at 15 months old. She wore her Doc Band for 5 months and we saw great correction. Her facial asymmetry and ear misalignment is hard to see now. You can only see a little flattness in the back when her hair is wet now too.

Heather is 2 years old now and still receives Physical Therapy. She also has hypotonia which we were told is common in babies with torticollis.


Before being Banded(4 months old):

In her 1st Starband:

In her 3rd Starband(just turned 1)

Being Cast for her Doc Band
In Her Doc Band(16 months old)

Torticollis

Heather developed her plagiocephaly because she was born with Congenital Muscular Torticollis. Our Dr assured us that her neck would get better and put off referring her to Physical Therapy until she was almost 4 months old. By that time, even though we were doing aggressive repositioning, her plagio had become drastically worse.

What is Torticollis?
Torticollis (wry neck) is a symptom that causes a child's chin to be rotated to one side and his head to the other side. Disorders that can cause torticollis include congenital muscular torticollis, acquired torticollis, atlanto-axial rotary subluxation, and spasmus nutans (head tilt, nystagmus and head nodding).

Congenital muscular torticollis occurs when the sternocleidomastoid muscle on one side of your infant's neck is tighter than the other, pulling the head and neck to that side.

If the right sternocleiomastoid muscle is affected, the infant will hold his head with his chin rotated to the left and his head rotated to the right. In addition to the head posture, you may be able to feel a lump in the affected muscle, which is usually most noticable between 2 and 8 weeks of age. Unlike acquired toticollis, congenital muscular torticollis is usually painless.

Congenital muscular torticollis usually improves with range of motion and stretching exercises and massage, but it can lead to positional plagiocephaly and facial asymmetry. If it isn't quickly improving, then your child may need to be evaluated by a physical therapist.

What Should I Do If I believe my child has Torticollis or Plagiocephaly?

First, be sure to get an EARLY diagnosis. Infants diagnosed between 2-8 weeks of age can usually be corrected at home fairly quickly with repositioning techniques. Infants older than 2 months are more likely to require further medical interventions and take longer to correct. If your infant's head seems flat or their neck has a lump in one side or seems twisted/crooked to you, see a neurosurgeon or craniofacial surgeon as soon as possible.

Be assertive! Some pediatricians will tell you that "It'll get better on its own" or that "It will round out over time". Most doctors are not well informed about torticollis and plagiocephaly. Remember, it is your right to get a second opinion from a specialist. You have an obligation to your child to be their voice and help them.

Call your local Early Intervention Office if you think your child might need physical therapy for their torticollis. They will come out to your house, free of charge and evaluate your baby.

Secondly, if your child has been diagnosed with torticollis or plagiocephaly, they *must* wear the helmet as directed, and/or you *must* do the physical therapy exercises and/or repositioning techniques you learn, and you must do them often. I know that it is NOT fun for you or your child, and how sad it is to cause them "pain". But it is necessary.
If torticollis is left untreated, your child will be affected for the rest of their life!


There are some helpful links on the right for torticollis stretches you can do at home.

How Can I Help Prevent Plagio in My Baby?

Tummy Time!

*This is very important for ANY baby. Many babies don't like it at first, but you can encourage it by getting down there with him to play. Roll up a towel and place it under his chest/arms. This will lift his head a little so he can see better. If baby is really upset, try for short periods, several times every day.


Encourage Baby To Rotate Directions He/She Looks In:

*Many babies favor one direction, encouraging them to rotate directions they look while sleeping or in a car seat.

*Place baby in the crib with his head at the opposite end (so that he has to look opposite of the flat spot to see into the room). Babies like to see what's going on, so make him work for it!

*Place Car Seat So Baby has to look the opposite direction than the one they prefer to see siblings or look out the window.

*While holding baby in the crook of your arm (while bottle feeding, for example), work on using your opposite arm. This will be tricky at first, as we get pretty used to holding baby a certain way! Right handed people usually hold baby in the crook of their left arm, and Lefty's vice versa. If your a Righty, and baby's head is flat on the right side, you are putting pressure on the flat spot by holding him in the crook of your left arm. If you are nursing, obviously you have to hold baby this way for 1/2 of the feeding, but otherwise, try the other arm.


Reduce Time Baby Spends on Back:

*Dramatically reduce the amount of time baby spends on his back. This means cutting time in carseats, carriers, swings, bouncy chairs, etc. to a minimum. We all know how busy life can be, and obviously these items need to be used from time to time, but using them as little as possible will help. Try using a front carrier when out and about rather than using the carseat/carrier combo. If you spend 1 hour in the grocery store, that's one less hour that baby spends on his back. Use the carrier at home too, as an alternative to the bouncy seat/swing. Babies LOVE to be held, and you can work those leg and back muscles. Young babies can't be spoiled by holding them too much, so go for it! Take turns!

What Is Positional Plagiocephaly?

What is positional plagiocephaly?

Up until about one year of age, the bones of your baby's head are very thin and flexible. This makes your baby's head very soft and easy to mold. For the first few months of life your baby will not be strong enough to roll over on his own. If your baby prefers to look in one direction or if your baby is always on his back, part of his skull may become flat. This flattening is caused by constant pressure on one part of the skull. This is called positional plagiocephaly.

What causes positional plagiocephaly?

By keeping an infant's head in one position for long periods of time, the skull flattens (external pressure). Occasionally, a baby is born with this flattening because of a tight intrauterine environment (i.e., in multiple births, small maternal pelvis, or with a breech position). Other factors which may increase the risk of deformational plagiocephaly include the following:

*Long periods of time in a car seat, swing or reclining seat
*Congenital Muscular Torticollis
*Back sleeping(if baby prefers to face same direction)
*Restrictive intrauterine environment
*Prematurity

• muscular torticollis
  One cause of deformational plagiocephaly may be muscular torticollis. Muscular torticollis is a congenital (present at birth) finding in which one or more of the neck muscles is extremely tight, causing the head to tilt and/or turn in the same direction. Torticollis is often associated with the development of plagiocephaly since the infant holds his/her head against the mattress in the same position repeatedly.
  
  
• prematurity
  Premature infants are at a higher risk for plagiocephaly since the cranial bones become stronger and harder in the last 10 weeks of pregnancy. Also, since many premature infants spend extended periods of time in the neonatal intensive care (NICU) unit on a respirator, their heads are maintained in a fixed position, increasing the risk for this condition.
  
  
• back sleeping
  Infants who sleep on their backs or in car seats without alternating positions for extended periods of time are also at a higher risk for deformational plagiocephaly.