Congenital Torticollis (Twisted Neck)

Congenital muscular torticollis, also called wryneck, is usually discovered in the first 6 to 8 weeks of life. The infant keeps his or her head tilted to one side and has difficulty turning the head to the opposite side. If the infant is examined in the first month, a mass, or "tumor," may be felt in the neck. This is nontender and soft. It is attached to the muscle in the neck on the side to which the head is tilting. The mass gradually regresses so that by 4 to 6 months of age the "tumor" is gone.

A young child with a right-sided congenital muscular torticollis. Notice how the face turns away from the tight muscle.
Courtesy of Texas Scottish Rite Hospital for Children.

Congenital muscular torticollis can be associated with hip dysplasia (10% to 20%) so the hips should be examined in children with torticollis. If you notice that your child holds the head tilted to one side, consult your physician. Other conditions can cause torticollis, and the physician will check for those during the physical examination. X-rays and/or an ultrasound of the neck and/or hips may be taken. Ninety percent of children can be treated successfully with a stretching exercise program.
Cause

First-born children are more likely to have torticollis (and hip dislocation). This is likely from intrauterine "packing," resulting in injury to the muscle. The "tumor" is seen with response to the injury. As this resolves, the amount of scar in the muscle determines how tight the muscle is. There is no known prevention.
Symptoms

The head tilts to one side and the chin points to the opposite shoulder. The right side is involved 75% of the time. The lump is found in the muscle and it gradually goes away. There is limited range of motion of the neck. One side of the face and head may flatten as the child always sleeps on one side.
Treatment

The usual treatment consists of stretching exercises to turn the head so that the chin touches each shoulder and also so that the ear touches the shoulder. There are other options that can help. Position toys where the infant has to turn his head to see them. Carry the child so that they have to look to the involved side. Place the child in bed with the involved side toward the wall so that they have to look the opposite way to see you outside the crib. In 10% of children, surgery may be needed to correct the torticollis. This is an outpatient surgery to lengthen the short muscle.

Surgical Therapy
Patients whose pathology does not resolve after 12 months of physical therapy or who develop facial asymmetry or plagiocephaly during the follow-up period should undergo surgery to achieve the best cosmetic result.[17, 18] In delayed cases, additional surgery may be needed for the best cosmetic and functional result. Surgery is performed with the patient under general anesthesia. A 3- to 4-cm transverse skin incision is made about 1 cm over the sternal and clavicular origins of the affected muscle. The platysma is carefully divided along the line of incision to avoid injury to the external jugular vein. The 2 heads of the sternocleidomastoid muscle are dissected free. The muscle is divided using diathermy to prevent bleeding. The platysma is then sutured with absorbable 4-0 skin suture, and the skin is closed with continuous 4-0 nonabsorbable skin suture. An endoscopic or minimal access approach is being offered for the surgical treatment of torticollis. In this approach, muscular torticollis is surgically corrected via endoscopic tenotomy of the sternocleidomastoid muscle.[

Outcome and Prognosis

Recurrent torticollis after surgery is rare, with a rate of approximately 5%.[20] Even in patients older than school age and those who have finished growth, sufficient unipolar or bipolar release of the sternocleidomastoid muscle and intensive postoperative care are expected to yield satisfactory treatment results.[21] Secondary effects of untreated torticollis include plagiocephaly, facial hypoplasia, and musculoskeletal effects.

Plagiocephaly is an asymmetric skull deformity in infants that is caused by the flattening of one occiput that leads to the secondary flattening of the contralateral forehead. After the torticollis resolves, the plagiocephaly resolves; however, several years may pass before it disappears.[22] Although torticollis can predispose to plagiocephaly without synostosis (PWS), torticollis appears to result from plagiocephaly in a large proportion of cases of plagiocephaly with scoliosis.[23]

Facial hypoplasia is inhibition in the growth of the mandible and maxilla due to muscle inactivity. Clinically significant facial hemihypoplasia develops over 8 months; however, it is obvious in patients at the age of 2-3 years. Facial hypoplasia improves as the child grows, after the torticollis resolves.[24] Musculoskeletal effects include the compensatory ipsilateral elevation of the shoulder, as well as cervical and thoracic scoliosis. Wasting of additional muscles in the neck may be present due to sternocleidomastoid inactivity.

Physical therapy for torticollis

Also known as wryneck, torticollis is a condition in which a child's head is tilted. It is typically caused by either a tightening of the muscles of the neck, flattening of the back of the head or a combination of the two. The condition often refers to tightness of a specific muscle which pulls the head sideways toward the shoulder, turns the face toward the opposite shoulder and brings the head forward on the chest. Habitually spending time in this position frequently causes other neck muscles to tighten. Torticollis limits a child's ability to turn the head to see, hear and interact freely with his/her environment. Because of this, torticollis may lead to delayed cognitive development, delayed whole body awareness, weakness and difficulties with balance. Since the neurological component that directs development and balance is not impaired, children with torticollis may compensate for their head positioning and progress through their developmental stages asymmetrically. This asymmetry may cause spinal misalignment and uneven distribution of weight over the legs, leading to the development of orthopaedic problems.

Physical therapy helps children with torticollis develop properly. Learn about our Head Shape Evaluation Program.

Torticollis is also associated with a flattening of the back of the head, known as plagiocephally. As the infant keeps the head turned to the same side, the constant pressure on the back of the head leads to flattening accompanied by a bulging on that side of the forehead. If unchecked, torticollis and plagiocephally may contribute to perceptual problems and learning disabilities when children reach school-age.

Torticollis and plagiocephally should be evaluated by a physician to determine the cause and whether treatment is required. If treatment is necessary, a referral will be made to physical therapy. A physical therapist should individually assess the needs of each child and provide treatment, home exercise and positioning suggestions. The incidence of torticollis and plagiocephally can be minimized by providing supervised, awake prone time (tummy time), encouraging babies to look equally in both directions and by minimizing the use of baby equipment (car seats, bouncy seats, swings, etc.).

Activities for children with torticollis

For children with torticollis, it is very important that they play in all the following positions: prone (on tummy), lying on their side, sitting and supported standing. These are appropriate and necessary at any age. Encourage them to look at and interact with toys that promote rotation of the head and body to the child's non-preferred side. Set up the child's environment (i.e. orientation of toys, crib and play mat) to promote exploration toward the baby's non-preferred side. Prone: During stroller rides place grasp toys in front of or to the non-preferred side of the baby. Put your baby on your stomach over your lap. Hold toys above and to the non-preferred side. Carry your baby horizontally by scooping your hand under the baby's chest so its legs straddle your forearm. Play airplane or so big in this position in front of a mirror. Get down on the floor facing your baby with or without toys placed between you. Approach the baby from the non-preferred side. Hold toys above and to the non-preferred side.

Lying on their side: Encourage bilateral hand play (this promotes midline alignment). Place toys in a way that encourages downward gazing. This is an easy posture to start rolling to the stomach.

Sitting and standing (supported or independent): Encourage head turning to the non-preferred side with toys or visual engagement. Encourage looking and reaching with the baby's non-preferred hand. Encourage bilateral hand play in midline.

Carry your baby: Against your chest with baby facing out. Over or up against your shoulder. From under their tummy like a football.

Tummy time

Children with torticollis should play on their tummies, lying on their side, sitting and supported standing, as seen here.

It is important that all infants spend time awake on their stomachs (tummy time). Tummy time allows babies to strengthen and stretch muscles that are important for developing basic valuable motor skills such as crawling, standing, sitting and walking. Tummy time also facilitates visual development as your baby learns to move his/her head to look at objects and track movement. Tummy time should always occur while the baby is awake and be supervised by an adult. To reduce the risk of Sudden Infant Death Syndrome (SIDS) all healthy infants should sleep on their backs until they are able to roll from their tummies to their backs easily. Babies who do not spend enough time on their tummy and spend too much time on their back generally: Walk later than babies who have spent time on their tummy. Have tight muscles in their necks. Have flat spots on the back of their heads. Have weaker back and stomach muscles which may lead to difficulty sitting, standing straight or balancing in upright positions.

Aim for your baby to spend half their waking time throughout the day on their tummy. Start tummy time the day of your baby's birth. The sooner a baby spends time on his/her tummy the more comfortable this position will be as he/she continues to develop. If a baby is not used to spending time on his/her tummy, they may not enjoy it at first. Try introducing small amounts of tummy time and build up to the half day slowly.

Try these positions to give your baby some quality tummy time:
Place a thin blanket and toys on a firm surface (such as the floor) and lay your baby on his tummy to play. This is a great position for babies to look at toys and practice lifting their head.

Place your baby on his tummy on your stomach while you are lying on your back. Your baby can easily make eye contact with you.

Carry your baby like a football.

Put your baby on his tummy over your lap.

See also: Neck masses, Congenital muscular torticollis

What is Torticollis? Torticollis is a twisted (wry) neck in which the head is tilted to one side, while the chin is turned to the other side. A person with torticollis has uncontrolled spasms of the muscles in the neck, which result in the neck remaining in a twisted position. Torticollis usually affects the sternocleidomastoid muscle, a powerful muscle that connects the upper chest to a point on the skull, just behind the ear. Contraction and spasm of the sternocleidomastoid muscle causes the head to remain rotated and tilted to one side. The most common cause of torticollis is a drug side effect. Rarely, infants are

born with torticollis. The neck swelling is due to an injury to the sternocleidomastoid muscle on one side of the neck. The two sternocleidomastoid muscles rotate the head from side to side. The injury usually occurs just before delivery, or during delivery. The swelling gradually resolves, but the injured sternocleidomastoid muscle becomes a stiff band of tissue. This can result in abnormal positioning of the neck. Many parents, especially first time parents, dont realize that their child is having a problem. Often Torticollis is mistaken for the normal 'floppy' neck of a newborn. As the baby gets older it will become more apparent. Generally, you will see the tilt associated with Torticollis in the first week to 2 months of life.

An infant with a typical torticollis mass in the right sternocleidomastoid muscle (arrow) causing muscle shortening, a tilt of the head toward the right shoulder, and turning of the head to the left.

What are some of the signs and symptoms of Torticollis? Limited range of head motion Favors one side all or most of the time, and fights when trying to turn head opposite way Tilting head Shoulder is higher on one side of the body Stiffness of the neck muscles Swelling of the neck muscles (can be present at birth or after)

Symptoms of torticollis include neck pain, neck stiffness, and neck tenderness. A person with torticollis is unable to move the neck, and the head remains turned and tilted to one side.

Severe spasm and tightness of the neck muscles on one side Spasm in the muscles of the shoulder and upper back

My child just recently started tilting and showing signs of what his pediatrician thinks may be Torticollis. Does Torticollis always start at birth, or is it possible that it could start later? Congenital Torticollis is present at birth (but not all cases are diagnosed at birth). Acquired Torticollis developes later in life, and there may or may not be an underlying cause for it. Torticollis can sometimes happen after an infection, taking certain medications, neck injury, the list goes on. It doesnt always immediately start at birth. Is Torticollis fixable? Is there any lasting effects to this? Torticollis is 100% fixable with Physical Therapy, with stretches and exercises done at home and at the Physical Therapists Office. There are no lasting effects of Torticollis if it is treated. However, if the condition is left untreated it can cause vision problems and developmental delays. What caused the Torticollis? Was it something we could've prevented? The exact cause for most Torticollis cases is unknown. It can be caused from birth trama, being squished while in utero, long NICU (Natal Intensive Care Unit) stays, genetic disorders, or sometimes no known reason. There was nothing you did for this to happen, and nothing you could have done differently to prevent this. This is not your fault! I think my child may have Torticollis, what do I do now? If you suspect your child has Torticollis, make an appointment with your Pediatrician IMMEDIATELY. Your Pediatrician will want to give your child an exam, and can give you a referral to a Physical Therapist (PT). Sometimes, Pediatricians recommend waiting a few months or so to see if the tilting gets better or goes away. DO NOT WAIT. If your Pediatrician recommends waiting, demand a referral for an evaluation from a Physical Therapist. Physical Therapists see Torticollis on a regular basis, and have more knowledge on this condition than Pediatricians do. Often times, children are late in starting therapy because a Pediatrician recommended waiting to see if the problem solved itself, losing time the child could have been in PT already. Always remember with this condition, the earlier the better.

How do the Dr's or Physical Therapist's know for sure that what my child has is muscular and not something more serious causing it? Should I request some other kind of tests? No need to request extra tests. Tests are not necessary in the diagnosis of Torticollis. The evaluation of Torticollis begins with a history and physical exam. Physical findings in someone with Torticollis: Neck Tenderness Severe neck spasm and tightness of the neck muscles on one side Spams of the shoulder and upper back Decreased range of motion of the neck Head stays rotated and tilted to one side

Tests that may be used to evaluate Torticollis: Xrays of the neck CT of the cervical spine MRI Scan of the neck

If a Pediatrician or Physical Therapist (or both) has diagnosed your child with Torticollis, even without the tests, your child has Torticollis. This isnt a condition that is misdiagnosed once diagnosed. Your childs Physical Therapist or Pediatrician can feel the sternocleidomastoid muscle in the neck that causes Torticollis.

Our child is over 6 months old and just diagnosed with Torticollis, is it too late? And why did it take so long for my Pediatrician to diagnose? You are still in perfect age range for this to be fixed with Physical Therapy. This isnt a common condition, and so little info about it, everyone gets diagnosed at a different age and for different reasons. Pediatricians have little to no knowledge about this condition, and most have only read of it in textbooks. Mild cases usually take longer to diagnose.

We were referred to a group that is not a Pediatric Physical Therapist group. Should we switch to a group that specializes in Pediatric PT? I would ALWAYS, ALWAYS, ALWAYS recommend a Pediatric Physical Therapist if there is one in your area. I have found Pediatric Physical Therapists have more patience and experience with children and those tiny bodies. If you can switch, I would 100%. Ive heard that bouncers, swings, etc are bad for children with Torticollis, is this true? Yes and no. Yes, because if left in a bouncer or swing, etc too long it can add to the Torticollis by

hindering neck motion, not help. No, because if used sparingly, these toys can be very useful in the recovery for children with Torticollis. The Bumbo for example, is recommended for children with Torticollis because it can help neck strength. These items can be used, just limit the amount of time in them.

What is Early Childhood Intervention? Does Torticollis qualify for ECI? In most states, there is a program called Early Childhood Intervention. Early Childhood Intervention applies to children from birth to 3 years who are discovered to have or be at risk of developing a handicapping condition or other special need that may affect their development. You can receive FREE physical therapy up to twice a week in your home for your child with Torticollis. If you have health insurance, the Early Childhood Intervention program is still provided free, regardless of income or insurance.

Children at risk of a developmental delay or disorder are routinely referred to Early Childhood Intervention by their Pediatricians. If a child qualifies, he or she may receive a range of services at no (or low) cost to the family. Early Childhood Intervention is designed to improve outcomes for children with disabilities by providing early, appropriate, and intensive interventions.

In 1986, the U.S. Congress created the mandate for a range of services to be provided to infants and toddlers with disabilities, through what is referred to as Early Childhood Intervention.

Today, each state is provided grants from the federal government to provide comprehensive services to infants and toddlers with disabilities. A lead agency in each state administers the statewide program. Each state establishes criteria for eligibility within parameters set by the federal government, and as outlined in public law.

How do I find more information on Early Intervention Programs in my state?: Google YOUR STATE + early intervention programs OR Google YOUR STATE + early childhood intervention

Some EI direct links provided below:

Texas http://www.dars.state.tx.us/ecis/index.shtml

New York http://www.health.state.ny.us/community/infants_children/early_intervention/

Washington http://www.dshs.wa.gov/ITEIP/

North Carolina http://www.ncei.org/ei/

New Jersey http://www.njeis.org/

Arizona https://www.azdes.gov/main.aspx?menu=98&id=3026

Pennsylvania http://www.dpw.state.pa.us/About/OCDEL/003676718.htm

How often should I be doing stretches? What kinds of stretches should I be doing with my child? Stretches are recommended after every diaper change, or about 4 to 6 times daily. Below are some directions for stretching and exercises:

Instructions for Stretching & Positioning LEFT Torticollis Stretching

1. For the following stretching exercises, the parent sits with the back against the wall and knees bent.

2. Place the child in your lap, with the child on her back and knees tucked.

Sidebending 1. Hold the childs LEFT shoulder down with your RIGHT hand.

2. Place your LEFT hand on top of the LEFT side of the childs head, and slowly bend her head towards her RIGHT shoulder.

3. Hold the position for 10 seconds. Repeat 15 times, 4 to 6 times a day.

Rotation 1. Place your LEFT forearm against the childs RIGHT shoulder, and cup the childs head with the same hand. 2. Use your RIGHT hand to hold the childs chin. 3. Slowly rotate the childs face to her LEFT.

4. Hold the position for 10 seconds. Repeat 15 times, 4 to 6 times a day.

Positioning

Playing on stomach: When the child is on her stomach, position all toys in the crib so that the child has to turn her face to the LEFT.

Carrying 1. Hold the child facing away from you, in a side-lying position, with the childs LEFT ear resting against your LEFT forearm. 2. Place your RIGHT arm between the childs legs and support the childs body.

3. Carry the child in this position as much as possible.

Other Suggestions

1. Hold toys so that the child has to look up and out to her LEFT.

2. Position child in crib so that activities in the room encourage her to look LEFT.

3. While bottle feeding the child, position her to face LEFT.

4. While holding the baby across the shoulder, position her to face LEFT.

Instructions for Stretching & Positioning RIGHT Torticollis

Stretching

1. For the following stretching exercises, the parent sits with the back against the wall and knees bent.

2. Place the child in your lap, with the child on her back and knees tucked.

Sidebending 1. Hold the childs RIGHT shoulder down with your LEFT hand. 2. Place your RIGHT hand on top of the RIGHT side of the childs head, and slowly bend her head towards her LEFT shoulder.

3. Hold the position for 10 seconds. Repeat 15 times, 4 to 6 times a day.

Rotating 1. Place your RIGHT forearm against the childs LEFT shoulder, and cup the childs head with the same hand. 2. Use your LEFT hand to hold the childs chin. 3. Slowly rotate the childs face to her RIGHT.

Hold the position for 10 seconds. Repeat 15 times, 4 to 6 times a day.

Playing on stomach: When the child is on her stomach, position all toys in the crib so that the child has to turn her face to the RIGHT.

Carrying 1. Hold the child facing away from you, in a side-lying position, with the childs RIGHT ear resting against your RIGHT forearm. 2. Place your LEFT arm between the childs legs and support the childs body.

3. Carry the child in this position as much as possible.

Other Suggestions

1. Hold toys so that the child has to look up and out to her RIGHT.

2. Position child in crib so that activities in the room encourage her to look RIGHT.

3. While bottle feeding the child, position her to face RIGHT.

4. While holding the baby across the shoulder, position her to face RIGHT.

How often should my child be doing tummy time? 60 minutes a day of tummy time is recommended for child with Torticollis. You can break it up into six, 10 minute sessions to make it easier on everybody. Usually children with Torticollis are not big fans of tummy time, so this may be difficult at first. Gradually over time and as your childs range of motion gets better tummy time will get easier to for your child to do. Use of a mirror while doing Tummy Time can help distract your LO. Babies love to look at themselves, and when looking in the mirror, Tort babies are encouraged to look straight. Rattle toys, and singing songs also help the Tummy Time blues. My child also has Plagiocephaly, and were not sure if we want to use a helmet/band, etc. Does repositioning really work, or will we still have to go the helmet route? Repositioning can work, but it takes a lot of work and a lot of repositioning. A lot of times parents

who chose not to helmet at first try repositioning, and end up having to get a helmet anyway. Every situation is different, and it depends on how severe your childs Plagiocephaly is in regards to helmet or not. Try repositioning first for a couple weeks, and if you dont see any improvements, consider using a helmet.

What has worked for you in terms of sleep positioning? I'm finding myself not able to sleep because I'm constantly going in and repositioning my child because I'm so paranoid! For Torticollis ONLY (not plagio), during sleep, place your child in the (LEFT/RIGHT, the opposite way of the tilt) sidelying position with a firm pillow under the head to stretch tightness in sidebending. The pillow can be made from a blanket or birth cloth as well. Position your child when you put him down, again after he/she falls asleep, before you go to bed, and after he/she wakes up during the night to eat. No need to make any more extra trips to reposition your LO.

For Plagiocephaly, during sleep, position your child so there is no pressure on the flat spot. Use rolled up blankets or burp cloths tucked behind your childs lower back (not behind the head) to help keep them positioned. I've heard of positioners working for LOs with Torticollis. Where can I buy these? Baby Moon Pillow: http://www.shopbabymoon.com Snuggin Go: http://www.snuggingo.com/Home.html

Great Torticollis Information & References:

http://www.torticolliskids.org
http://www.freemd.com http://www.eapsa.org//Surgeons