Premature Baby Has Congenital Torticollis? Try These Simple Stretches

Congenital Torticollis

This is a fairly common condition that affects 1 out of every 250 babies born in the United States. If your baby has this condition you will notice that she keeps her face turned toward one side of her body more than the other. In addition, her head will tilt or bend to the opposite side. Parents of infants with this condition have also reported that they were able to feel a small but noticeable lump in the center of the Sternocleidomastoid Muscle (SCM) on the side of the baby’s neck. The SCM is a large rope-like muscle that begins on the scapula and ends on the base of the skull. This muscle is responsible for tilting and rotating the head.

How is Congenital Torticollis discovered?

Congenital Torticollis is usually found during a routine examination by the baby’s pediatrician within the first month or two after the baby’s birth. Most cases of Congenital Torticollis are subtle and often go unnoticed by parents who may not know what to look for. Once your doctor has ordered X-rays to confirm the diagnosis, he may also recommend that your baby receive physical therapy.It’s important to begin treatment as soon as possible for this condition because if left untreated Torticollis could cause your baby to develop Plagiocephaly (Flat Head Syndrome), a condition that causes the back or side of baby’s head to become flattened due to prolonged pressure on the same part of the skull. Premature babies are especially susceptible to Plagiocephaly because their skulls are softer than the skulls of full term babies.

How is Congenital Torticollis treated?

This condition may be corrected using simple stretches and positioning at home. In addition, Torticollis may be resolved by turning your baby’s face to the opposite side each time you put her to sleep.

1. The “Head Turning” neck stretch

  • Put your baby to lie on her back on the couch with her head close to your body.
  • Hold a brightly colored toy about 4-6″ in front of her face and move it from side to side so that she has to turn her head to track the toy.
  • As your baby turns her head to look at the toy, move the toy down to the surface of the couch so that she has to turn her head in the opposite direction from the side that she normally keeps her head turned toward.
  • Put your hand on the side of her head to keep her head turned towards her non-favorite side for as long as she can tolerate it.
  • Rub her tummy and talk to her to keep her calm during this exercise.

2. Football Stretch (For Right Side Torticollis)

  • Hold your baby with her back against your chest.
  • Tilt her body so that she is leaning at a 45 degree angle with her head towards your right arm.
  • Slide your left arm between her legs and up across her chest and hold down her right shoulder with your left hand.
  • Use your right hand on the right side of her head and gently tilt her head sideways until her left ear touches the top of her left shoulder.
  • You are now stretching the right Sternocleidomastoid muscle.
  • If your baby has left side torticollis reverse the above directions to stretch the left Sternocleidomastoid muscle.

3. Stretching while bottle-feeding (Right Side Torticollis)

  • If your baby has right side Torticollis then she would have difficulty turning her head toward her right side.
  • Hold baby in your left arm and begin feeding her with a bottle.
  • When she is feeding comfortably remove the nipple from her mouth.
  • Touch the nipple to the right side of her mouth and cue her to turn her head to the right to get the nipple back into her mouth.
  • Repeat this process of removing the nipple from her mouth and coaxing her to head to the right side to get the nipple back into her mouth until her head has turned all the way to the right side.
  • Complete her feeding with her head turned all the way to the right side and this will stretch her right SCM muscle.

This condition should gradually resolve itself if you stretch your baby’s tight neck muscles 4-5 times every day.

Spastic Diplegia in Children With Cerebral Palsy

The form of cerebral palsy known as “spastic diplegia” is one of five categories of spastic CP that help indicate what parts of the body are primarily affected. In the case of diplegia, the lower extremities (legs, hips and pelvis) show spasticity abnormalities while the upper extremities function at a normal or near-normal capacity. Children born with this form of cerebral palsy exhibit near-normal cognitive development and performance, but are frequently delayed in their ability to walk. Once they are able to walk, they commonly have a pronounced scissoring gait, with legs crossing over each other in a stiff, scissor-like pattern.

Even though spastic diplegia is generally considered one of the lesser forms of cerebral palsy, people who suffer from it can expect lifelong difficulty with all voluntary and passive leg movement, as well as pain associated with muscle and joint breakdown that can lead to arthritis and tendinitis. Some forms of spastic diplegia are mild enough to result in barely noticeably abnormalities in balance and gait.

The cause of spastic diplegia, as with many forms of cerebral palsy, is from neonatal asphyxia, a sudden depravation of the oxygenated blood that passes to the fetus through the umbilical cord. This is sometimes combined with a pre-term birth. Spastic diplegia can also be the result of bladder, kidney, urinary tract, STD’s, yeast infections or bacterial vaginosis in the mother during pregnancy. These conditions can lead to infant hypoxia, which inhibits proper development of upper motor neuron function associated with movement.

Dr. William John Little’s first recorded encounter with cerebral palsy during the 1860’s is reported to have been among children displaying signs of spastic diplegia. For this reason, spastic diplegia is sometimes referred to as “Little’s Disease.” Diagnosis of spastic diplegia usually can’t be made until a child is several months or even several years old, but a child can be labeled “high risk” if they experienced birth trauma before, during or shortly after delivery. This includes prematurity of more than 3 weeks. If a child does not meet standard developmental milestones regarding movement of the legs (usually around 18 months), a preliminary diagnosis of spastic diplegia may be made. Around this time, a parent may observe a child’s legs as unusually stiff or floppy (which will gradually lead to stiffness). The cause of this is the failure of the motor neurons to properly develop muscle tone. Normal muscles function in pairs-one contracting while the companion muscle relaxes. When this function is compromised, both muscles contract simultaneously. Hypertonia is the result of too much muscle tone. Hypotonia is too little muscle tone.

Some of the indicators of spastic diplegia include:

1) Children often prefer sitting in a “W” position. Physical therapists will encourage sitting cross-legged or chair sitting.

2) Children may fail in early attempts to crawl, or begin crawling by pulling themselves forward with the use of their forearms, letting their legs drag behind.

3) Children who have failed to pull themselves to a standing position by age 2 and a half may require devices, such as braces, to assist with standing. Standing puts important stress on leg bones and joints, thus promoting healthy growth.

4) Toe walking or feet-rolling–can be improved with low profile/low impact leg braces.

5) Spastic diplegia can lead to gradual hip dislocation, a condition that promotes arthritis and pain. For this reason, regular hip x-rays and exams are needed to monitor the disease.

Physical therapy, including massage therapy, is the most important treatment for any form of spasticity, aimed at training and strengthening muscles to promote healthy bone growth, balance and motor functions. There are medication that can be taken to relax tight muscles and minimize spasms. Injecting Botox into overly tight muscles has proven to provide at least temporary relief. In more extreme cases, surgery can be performed to lengthen muscles. Other treatments include electrical muscle stimulation, hyperbaric oxygen therapy and hippotherapy.

If pain and spasticity are severe enough to inhibit walking, orthopedic surgery can become an option. First, it must be determined which of the 30 major muscles are causing the problem. Gait analysis, a computerized diagnostic technique, is used as a guide in making

Before surgery occurs, doctors must determine which among the 30 major muscles involved in walking are causing the problem. Doctors today use a computerized diagnostic technique known as gait analysis to guide them in making surgical decisions. Gait analysis uses:

1) cameras that record how an individual walks

2) force plates that detect how the feet land

3) a test called electromyography that records muscle activity

4) a computer program that gathers and analyzes the data.

Using this information, doctors can precisely locate which muscles would benefit from surgery and how much improvement in gait can be expected. The timing of such surgeries is based on the child with cerebral palsy’ s motor development and age. Surgery to correct spasticity in upper leg muscles is likely to occur between ages 2 and 4, while surgery to correct spasticity in the lower muscles (hamstring, Achilles tendon) would likely occur around age 7 to 8. Orthopedic surgery had evolved into a relatively simple procedure, often being done on an outpatient basis.

In cases of extreme spasticity and associated pain, SDR (selective dorsal rhizotomy) surgery may be required. SDR surgery involves severing specific nerves at the base of the spinal column to release stress on the targeted muscles.

Why is Early Intervention of Great Importance?

It’s every parent’s worst nightmare to find out that your child has been born with a disability. Feelings of fear, anxiety, depression, isolation and helplessness often surround new parents who don’t know where to go or who to turn to.

Early intervention services are designed to quell the anxiety by providing resources and solutions to help you and your baby grow. With an early intervention, the child will foster with a large support structure and will have the best chance at normal development through specially-focused programs, while you get the emotional support you need to make it through the first few difficult years.

There are three main reasons to consider such a program. First, early intervention services enhance child development. Intervention research suggests that the rate of human learning and development is most rapid in the first five years of life.

Early skill development is crucial to laying the groundwork for lifelong education. Secondly, these interventions assist parents and siblings, helping them deal with feelings of stress or helplessness, while learning to maintain a positive attitude.

Families of handicapped children are found to have increased instances of divorce, suicide and domestic abuse, experts say, so an early intercession is critical to managing emotions from the onset. Lastly, early intervention services will increase the child’s developmental and educational gains, increasing his or her eligibility for future employment and self-sufficiency.

Some parents wonder, “Is early intervention really effective?” After nearly 50 years of research by the Department of Education, there is substantial evidence that early intervention services increase the developmental and educational gains for the child. Additionally, children with early interventions need less services later in life, have less instances of failing a grade and offer more long-term benefits for society.

The parents who go through the intervention program are also in a healthier, happier place. One intervention study indicated that disadvantaged and gifted preschoolers benefited from an early intervention program all the way through to age 19. These benefits included more dedication to school, more college attendees, higher reading/arithmetic/language test scores, fewer instances of delinquent behavior and a 50% reduction in the need for special education services in high school (Berrueta-Clement, Schweinhart, Barnett, Epstein, Weikart, 1984).

If you’re wondering what early intervention professionals can offer you, then check the National Dissemination Center for Children with Disabilities site for more details. Generally, intervention services may include family intervention training/counseling, home visits, special instruction/speech therapy, hearing impairment services, occupational therapy, physical therapy, psychological evaluation/therapy, medical services (if necessary), social work services, assistive living technology, transportation, nutrition services and service coordination.

Loving My Christmas Girl Born Disabled by Congenital CMV

Expecting our second child, due to arrive Christmas Eve of 1989, had been a delightful experience. What a Christmas present! But the moment Elizabeth was born on December 18. I felt a stab of fear. My immediate thought was, “Her head looks so small–so deformed.” Before she was twelve hours old, I found out why.

When the neonatologist entered my room the following morning, he said, “Your daughter has profound microcephaly–her brain is extremely damaged throughout. If she lives, she will never roll over, sit up, or feed herself.”

He concluded that Elizabeth’s birth defects were caused by congenital cytomegalovirus (CMV) – a virus that may have no symptoms for the mother, known as a “silent virus,” or it may present itself with mild to severe flu-like symptoms.

The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies a year are born with or develop permanent disabilities because of congenital CMV. It is the #1 viral cause of birth defects–more common than Down syndrome.

How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it because it is frequently being shed in their saliva and urine. Pregnant women need to avoid kissing them on the mouth and sharing towels and utensils with them. Hands should be washed thoroughly, especially after wiping runny noses, diaper changes and picking up toys that have been in a toddler’s mouth.

While I was pregnant with Elizabeth, I not only had a toddler of my own, Jackie, but also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may experience a gradual hearing loss, suffer some visual impairment or struggle with slight learning disabilities. But Elizabeth’s case was not a mild one.

“My life is over,” I thought. I asked God to heal her instantly, but since He didn’t, I begged him to kill me and prayed to be crushed to death in an earthquake or struck by lightning. I just couldn’t handle raising such an afflicted child, period. Although children are supposed to be a blessing, I felt far from blessed–I felt stricken.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

“Oh God,” I prayed, “please help me love Elizabeth too.”

Initially, whenever I looked upon Elizabeth, my heart broke afresh. I couldn’t see past her prognosis. The prognosis became more of a person than Elizabeth herself–it was a living creature relentlessly torturing me.

If I was ever to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into my head like, “What will she be like in the future?”; “Why didn’t my OB/GYN warn me about this?” and “Why would God let me catch CMV?”

In those days after Elizabeth’s birth, all I could do was rock her and read the book of Psalms. Before Elizabeth was born, I really couldn’t relate to the Psalmists. I thought, “Wow, those people are really depressed!” Now, I found comfort in their bitter questions, such as, “How long must I bear pain in my soul, and have sorrow all the day?” Knowing I wasn’t the only one despairing of life made me feel less alone.

It took Elizabeth a couple of months to finally figure out where my face was, but then one day she looked directly into my eyes and smiled-we had finally connected! I gradually began to think, “If she doesn’t care that she’s severely mentally retarded, and, apart from a miracle, will never walk or talk, why should I be so upset?” Maybe it was the sedative Valium talking, but that thought stuck with me, even when I no longer needed “mother’s little helpers” to get me out of bed and into the shower.

Eventually, I no longer focused on Elizabeth’s disabilities, but on her abilities-her appreciation for being alive for one. Although she could not hold up her head or move her tightly clenched fists to reach a toy, she could hear and see-at least a little. She could not sit up by herself much less crawl, but she could sit for hours snuggled contentedly in my lap and study my face with her large blue eyes framed by long dark eyelashes. When I smiled at her, she’d break into an ear-to-ear grin in return, letting me know that my happiness with her was all she needed to be satisfied in this world.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth’s condition. Life did become good again. We were eventually able to move ahead as a happy, “normal” family. Even strangers played a part in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the muck of an upstate New York county fair, I felt myself sinking into a depression because children were staring at my little girl who could not even hold up her head. “She looks funny,” kids said loudly to their embarrassed parents. In the midst of my dark thoughts, a heavily tattooed carnival man, who looked like he had been drinking for years, ran from behind his game booth and came right up to me. My alarm melted into tears of gratitude when he handed me a large, brown teddy bear from his stash of prizes and said, “I want your daughter to have this.”

One long-term nagging problem, however, began the day my older daughter, Jackie, asked, “Can I have a dog?”

I cringed. The dreaded day was here-all kids inevitably ask for one. And why wouldn’t they? Movie dogs like Lassie drag you from burning buildings and keep you warm when you’re lost in a blizzard. But by the time we’re adults, we’ve learned the truth about them: they urinate on your new wall-to-wall carpets, dig holes in your leather recliners to hide their rawhide bones, and bite your neighbor’s kid.

“No, you can’t have a dog,” I said, bracing myself for the age-old argument. “We just can’t risk a dog around your sister.” I hated admitting that. I didn’t want her to blame Elizabeth for being so fragile. But taking care of Elizabeth was already enough work without adding a dog that might playfully nip at her.

I know! I’ll give Jackie the “lip-severing story.” That’ll convince her we can’t have a dog around her sister.

“When I was 13,” I began, “I talked Grandma and Grandpa into letting me have a Weimaraner. His name was Bogie-short for Humphrey Bogart-and he was a nipper. One day, my two-year-old cousin Suzannah was playing on the floor underneath the table with a Popsicle stick in her mouth. Bogie snapped at the stick and bit her lip off! My grandmother got the lip off the carpet and wrapped it in a paper napkin to take to the hospital. But it couldn’t be sewn back on. A surgeon fixed Suzannah’s face, but when we got home, my mother loaded Bogie into the back seat of the car and took him to the vet’s. I never saw him again. He took the ‘long walk’ as they say in the Lady and the Tramp movie.”

I paused so Jackie could let the horror of the incident sink in.

But all she wanted to know was, “Where’s Suzannah’s lip now?”

“Gosh, I don’t know! The last time I saw her lip it was stuck to the napkin, all shriveled and mummy-like on my grandmother’s bookshelf. But that’s beside the point; can’t you see how dangerous a dog could be for your sister? She can’t speak-how would she call out to us if she was in another room and the dog was bothering her?”

If there were a Lassie-like dog out there, Elizabeth more than anybody could use one, but I just couldn’t take that kind of a chance on an animal that could live up to 13 years.

After many tears and arguments, I finally made Jackie a promise: “If God brings one to our door, then you can have it. How’s that?”

“Really?” she asked, a smile spreading across her face.

“If one shows up at our door, I’ll assume it is a sign from God that it’s a special dog who will be gentle around Elizabeth.”

“Mom, I love you!” She threw her arms around my neck and kissed my cheek.

I felt bad-all I had really given her was a bit of hope. Jackie actually thought a dog would show up.

Perhaps there was a compromise to a dog? There must be a pet out there that wouldn’t hurt Elizabeth. A goldfish? I mean other than a freak accident, like it flipping out of its bowl and hitting Elizabeth in the face, the thing couldn’t possibly hurt her. A hamster? They are entertaining-running around and around in a hamster wheel with no clue they aren’t going anywhere. Maybe Elizabeth could enjoy a hamster too. She was incapable of holding it, but she might find it amusing to watch it run in its wheel.

Perhaps a spinning hamster would make Jackie forget about a dog-the way my parents thought getting me Bogie would help me forget about boys…

Of course what happens next is a whole other story!

Lisa Saunders