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Peace In Our Hands™

Williams Syndrome and the Power of Infant Massage

By Carole Shugard, C.I.M.I., Susan Curwen, C.I.M.I., and Kalena Babeshoff, Consultant and Director, Foundation for Healthy Family Living

May 2008

Williams Syndrome is a multi-system disorder that occurs due to the deletion of specific genetic material, causing physical and developmental characteristics and health concerns. Although infants are born with Williams Syndrome, it may not be diagnosed until a later time; some people with Williams Syndrome have not been diagnosed until adulthood! During the past decade, due to media involvement, numerous research projects and publications, and the education of many professionals in the fields of health, rehabilitation and education, Williams Syndrome has become more widely known and children are typically being diagnosed at younger ages.

An earlier diagnosis of Williams Syndrome allows families to access services and resources that can provide invaluable support, training and opportunities for the baby, as well as for the family. Infant Massage is one of the most powerful tools for families to use in order to enhance their babyˇ¦s overall well being and to address specific aspects of health and development. This article will discuss the use of Infant Massage and its many benefits, with a specific focus on the baby with Williams Syndrome and the common characteristics of this syndrome that can impact overall health, growth and development.

PLEASE NOTE: Due to the high prevalence of cardiovascular issues, including possible hypertension, as well as other medical issues common to Williams Syndrome, it is critical that a physician be consulted prior to initiating Infant Massage on a baby or child diagnosed with Williams Syndrome in order to avoid potential complications. Never massage over the site of an active injury or a surgical area not completely healed.

Not every baby with Williams Syndrome will have all of the possible issues listed here. However, common conditions associated with Williams Syndrome babies include:

  • cardiovascular involvement (generally SVAS and/or PAS), hypertension;

  • infantile hypercalcemia, colic, overall fussiness and irritability;

  • longer periods of crying, poor regulation of sensory states, hard to calm;

  • constipation, reflux, projectile vomiting, gastrointestinal issues;

  • feeding issues, oral-motor difficulties, aversions to some food textures;

  • poor weight gain, failure-to-thrive;

  • poor sleeping patterns, especially through the first year;

  • sensitive hearing, hyperactive startle response;

  • generalized hypotonia (weak muscle tone), weak joints, poor coordination;

  • developmental delays in gross/fine motor skill areas, delayed milestones;

  • hernias, kidney problems.

Infant Massage is a simple yet powerful tool that can positively impact both baby and family in numerous ways. In the last three decades Infant Massage research has shown improvements in the areas of health, relationships and interactional patterns, developmental growth, and behavioral adjustment for babies who experience massage on a consistent basis. (Research details are beyond the scope of this paper but various articles and handouts being provided contain further information and resources listed.) Nurturing touch allows parents to actively communicate their love and caring for their little ones, and ensures that babies feel secure, attached and safe in their environment. When parents are taught Infant Massage by a certified instructor, they learn how to adapt strokes and holds for specific sensory input, to read their babiesˇ¦ cues of engagement and disengagement, and to more easily interpret their babiesˇ¦ responses. Parents and babies engage in a kind of dance, where both verbal and non-verbal interaction takes place, and where touch ˇV the most important sensory learning experience for a baby ˇV links parent and baby together, providing benefits to them both.

The primary family unit is the most important initial foundation upon which baby builds social and emotional skills and develops positive interactional patterns through the process of having basic inherent needs met. These early experiences (of parent/family responding to meet babyˇ¦s needs, of safety, of secure bonding and attachment, to name a few) are the basis for future development in social and emotional domains, and in interactive communication. Mother and baby are biologically wired to respond to each other, through early joint eye contact, an innate response towards babyˇ¦s cry, nurturing hormone production, the use of ˇ§mothereseˇ¨ to vocally engage baby, and many other automatic steps in the dance of secure attachment and bonding. The use of touch is a critical component in this dance, and in fact in the healthy beginnings of babyˇ¦s life. Infant Massage provides parents with a way to bring supportive, nurturing touch into their daily routines with their baby, with tremendous benefits to both parent and baby. Specific strokes can be used, with love and respect, to bring relief, comfort and pleasure to baby, while empowering the parent in providing such a meaningful experience for their little one. Even babies with significant medical conditions can benefit from nurturing touch and containment holds. And for parents, especially while dealing with the grief of having their child diagnosed with special needs, Infant Massage can help them connect both physically and emotionally with their little one.

Benefits of Infant Massage for parents include increased attachment and bonding, an increase in parental confidence and empowerment, improved verbal and non-verbal communication skills between parent and baby, an increase in the production and release of Oxytocin and Prolactin (nurturing hormones), and reduced parental stress. There may also be a positive impact on other relationships as well in the home due to a general reduction in stress levels of the family members caring for the baby.

In general, benefits of Infant Massage for all babies include promoting bonding and attachment, relaxation and a reduction in muscle tension, enhanced awareness of feeling safe and secure, improved circulation and digestion, strengthening of the digestive tract and respiratory tract, improvement in weight gain and sleeping patterns, stimulation of brain development and the immune system, and relief from the discomfort of various pains such as colic, constipation, teething, etc. These babies may be less fussy and more interactive. In addition, babies who experience regular massages tend to be more competent and to be able to self-regulate more effectively.

For babies with special needs, additional benefits can include improved eye contact and socialization, acceptance of positive touch, a decrease in gas and general gastrointestinal distress, less constipation and discomfort, relaxation of tight muscles (hypertonia) or normalization of muscle tone for babies with weak/floppy muscle tone (hypotonia), more awareness of overall body/limbs (i.e., more hand play in mid-line), enhancement of self-regulation (baby more able to maintain an alert and interactive state), sensory system normalization (baby better able to tolerate various textures and stimuli without becoming overwhelmed), emotional state normalization (baby is able to release pain and tension from trauma/treatment incidents, and to connect with family in a healthier dynamic), and overall normalization of posture and postural control abilities.

Infant Massage can positively impact common health issues and areas of concern for babies with Williams Syndrome. Based upon the multiple issues that may be a part of the diagnosis of Williams Syndrome (as noted above), the following specific benefits may occur through the consistent use of massage.
1) Cardiovascular issues and hypertension impact a large number of our babies, with varying degrees of severity. In many babies with Williams Syndrome, these issues are in the mild range, and Infant Massage can be done safely; with moderate or severe levels of cardiac involvement, or where cardiac surgery is necessary, Infant Massage may be contraindicated due to cardiac/circulatory complications. In these cases, warmly holding the chest instead of using strokes may be a safe alternative. IT IS UP TO EACH FAMILY TO CHECK WITH THEIR PHYSICIAN BEFORE INTRODUCING INFANT MASSAGE TO THEIR BABY. Due to the progressive nature of cardiac disease, it will also be necessary to ensure through periodic medical follow-up that massage continues to be appropriate. Watch for signs of over-stimulation or distress (physiological changes such as color and/or respiration changes, gagging or spitting up, yawning or hiccupping, ˇ§shutting downˇ¨ or averting or closing eyes, disorganized movement of limbs, pulling away, etc). Stop immediately if baby becomes over-stimulated and instead either cuddle baby or offer a containment hold on the specific body part being massaged when baby began to be overwhelmed. (Note: some strokes move circulation away from the heart. If using these strokes, it is critical to send the blood flow back towards the heart. A Certified Infant Massage Instructor can demonstrate how to use these strokes safely.)
2) Infantile hypercalcemia, colic, overall fussiness, and irritability are issues that can be overwhelming for parents with babies with Williams Syndrome. It feels as if our little ones can rarely be appeased, and they seem uncomfortable in their own skin. Medical intervention is critical to determine the actual cause and degree of involvement, and is a priority as early as symptoms occur. Infant Massage can offer relief for the pain and discomfort of colic and colic-like symptoms, and can ease a babyˇ¦s fussiness and irritability. (Certain strokes need to be adapted or avoided if there is respiratory or cardiac involvement; discuss this with your Certified Infant Massage Instructor.) Infant Massage can also ease parental feelings of failure and grief that may occur when parents are unable to soothe and calm their baby. Watch for signs of over-stimulation as discussed above, and adapt strokes and holding to assist baby in processing the massage experience in a positive way. A specific sequence of massage strokes can help alleviate the pain and discomfort of colic and gas build-up. Warm baths can also help ease tummy discomfort.
3) Longer periods of crying, poor regulation of sensory states, hard to calm ˇV our little ones often seem to have difficult first years in terms of their abilities to accept and process sensory input from the world around them. Infant Massage and nurturing touch can be used to help the babyˇ¦s sensory system learn how to better receive and process all forms of input ˇV touch, texture, movement, position in space, even visual and auditory experiences. At first, massage may actually increase the stress of a baby who is disorganized; starting with swaddling a baby, or using containment holds, can help baby to calm. Actual massage strokes can be built up to slowly as the baby adjusts to more physical touch. Medical attention needs to be obtained if baby continues to express pain and/or discomfort. However, once medical issues are ruled out or accounted for, sometimes just actively listening to the baby cry and allowing the baby to release negative emotions can also be helpful. A calm and quiet environment can also be helpful for allowing baby to accept touch and sensory input. (For parents as well, letting go of our stress and painful emotions is important for us ˇV because we can transfer our emotional states to our babies! Breathe deeply, and remember to nurture yourself as well as your baby. This will maximize massage benefits to both you and your baby.)
4) Constipation, reflux/vomiting, and gastrointestinal issues are generally present for all babies with Williams Syndrome, to some degree. Massage can help relieve pain and discomfort (see #2 above), but it is critical first to obtain medical assistance. Actual use of massage strokes will depend upon the type and severity of medical complications present. For general constipation, the specific sequence of strokes used for colic can be helpful in alleviating this problem when used consistently. (Again, some stroke restrictions may apply based on medical conditions and severity.)
5) Babies with Williams Syndrome have many feeding difficulties, including oral-motor issues, low muscle tone in the mouth/tongue, poor coordination with sucking and swallowing, a hypersensitive gag reflex, and aversions to various textures and types/mixes of foods. Infant massage strokes on the mouth, jaw and face areas may assist baby in normalizing muscle tone to some degree; strokes can also desensitize these areas and improve oral-motor control and integration of sensory input. (Working with an Occupational Therapist on actual oral-motor difficulties and feeding issues can be critical in helping baby develop safe and normal eating skills, and may also positively impact the development of speech and language skills.)
6) Poor weight gain and failure-to-thrive are closely related to the feeding issues as discussed above, but may also be associated with the degree of cardiac involvement, gastrointestinal issues, sensory state regulation issues, and abnormal sleep patterns, as well as other medical issues common to Williams Syndrome. Multiple studies have shown weight gain and weight maintenance to be a consistent benefit for babies, both with and without special needs. (Little ones with Williams Syndrome should have weight, height and head circumference checked on WS growth charts regularly by their physician for an accurate indication of changes in these areas; periodic monitoring will help to ensure that medical intervention is timely if needed.)
7) As parents of babies with Williams Syndrome are well aware, normal sleeping patterns (especially in the first year of life) may not be part of babyˇ¦s routine. With all the medical issues and pain/discomforts these little ones experience, it is hardly surprising that these babies are ˇ§poor sleepersˇ¨. They may resist falling asleep, sleep lightly and wake easily, or alternate brief naps with bouts of crying and distress. Parents, often overwhelmed by their own lack of sleep, may feel completely frustrated when their baby is unable to sleep for more than short periods at a time. Infant Massage can help reduce the pain and discomfort in the areas addressed above, improve babyˇ¦s ability to relax, and reduce muscle tension; all of these benefits can help baby to fall and remain more deeply asleep. Remember, breathe deeply ˇV this too shall pass, and eventually (usually after 10 months of age or so) baby will be able to sleep.
8) Sensitive hearing and a hyperactive startle response may be another reason why baby does not sleep well. A quiet environment can help baby not be overwhelmed, and will allow baby to shift into a quiet-alert or sleepy state more easily. It may be hard for baby to calm down after being startled; baby may become highly agitated. Swaddling tightly or holding baby in a quiet, dark room so that baby can calm again may be helpful.
9) Weak muscle tone (hypotonia), weak joints and poor coordination of overall movement patterns can be improved through consistent use of Infant Massage. Using lighter and/or faster touch, music with a faster pace, and repetition of strokes can help baby become and remain more alert, and provides sensory input to muscles and joints. The sensory experience of feeling all parts of his/her body will provide baby with early body awareness which parents can build on through movement play and as a part of everyday routines (such as bathing, dressing, eating, playing, exploring the environment, moving independently, etc). This in turn can lead to more competent, integrated movements and improved coordination of both gross motor and fine motor skills. Caution: because the baby with Williams Syndrome may not initially process stimulation competently, as discussed above, it is important to offer a balance of calming and alerting strokes and experiences, and to carefully observe baby for cues of engagement and disengagement. When baby shows initial signs of over-stimulation, immediately stop massage and use a containment hold to calm baby; or cuddle or swaddle baby to help baby reorganize. Be sure NEVER to twist on any joint areas, or to massage directly on the spine. A Certified Infant Massage Instructor can assist parents in adapting strokes based on the response of the baby, and ensuring that the balance of strokes offered meets the needs and abilities of the baby without being over-whelming.
10) Numerous studies and research articles discuss the issues of developmental delays in the areas of gross and fine motor skills for babies and children with Williams Syndrome. In general, developmental milestones will not be met in the same time frame as typically developing children. Infant Massage begins by helping parents to interact successfully with their babies, building patterns of communication (both verbal and non-verbal) and attachment that is the foundation for future learning in all developmental areas. The dialogue of touch between parent and baby during massage sets the stage for healthy emotional and social development growth, enhances language development, and provides critical sensory input to aid in brain development and overall immune system functioning.
11) Hernias and kidney issues impact what areas of massage should be avoided, and what strokes can be safely utilized and are most beneficial for the baby with Williams Syndrome. Further medical information should be obtained in order to provide safe massage for these conditions. Please consult a physician and a Certified Infant Massage Instructor for appropriate training.

Although this article has focused on Infant Massage training for babies, the benefits of massage work can be adapted and utilized with wonderful results for toddlers, school age children, and even with adolescents. There is a connection between parent and child that regular massage deepens: especially as our children grow older and schedules (both ours and theirs!) become busier, massage time can give our children a chance to relax with us, sharing their stories in a safe and nurturing environment, knowing they will be listened to and accepted unconditionally. In fact, massage is a wonderful tool for keeping the door to communication open with all family members. And Infant Massage strengthens perhaps the most critical early component in family dynamics: healthy bonding and attachment between parent/family and baby.

In closing ˇV due to the many medical, growth and developmental challenges of babies and children with Williams Syndrome, formal Infant Massage Training is highly recommended in order to ensure safe massage practices. Certified Infant Massage Instructors can offer insights into how best to utilize massage within normal daily routines so that neither baby nor parent becomes overwhelmed, and can also train specific necessary adjustments made based on the issues and concerns discussed in this article. For the safety of your child, please obtain physician approval and proper training in Infant Massage before beginning this wonderful practice. For further information on Infant Massage Training, or to find a Certified Infant Massage Instructor in your area, the following resources are offered:

A Foundation for Healthy Family Living ˇV Kalena Babeshoff, Founder and Director ˇV
International Loving Touch Foundation, Inc. ˇV
International Association of Infant Massage ˇV

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