TREACHER COLLINS SYNDROME:
NUTRITION, FEEDING, AND EATING
Dorothy MacDonald, R.N., B.S.
Clinical Coordinator and Feeding Specialist
Craniofacial Centre
The Children's Hospital
Boston, Massachusetts
Molly Holland, M.P.H., R.D., C.D
Nutritionist
Children with Special Health Needs
Vermont Department of Health
Rutland, Vermont
Hope Charkins, M.S.W.
Executive Director
Treacher Collins Foundation
Norwich, Vermont
a publication of :
TREACHER COLLINS FOUNDATION
P.O. Box 683
Norwich, Vermont 05055-0683
U.S.A.
(802) 649-3050
1-800-TCF-2055
PREFACE (9/1996) This booklet was co-authored by Dorothy (Dotty) MacDonald, R.N., B.S., Molly Holland, M.P.H., R.D., C.D., and Hope Charkins, M.S.W.
* Dotty is the clinic coordinator and feeding specialist for the Craniofacial Centre at The Children's Hospital, Boston. She has had extensive experience feeding newborns, infants and toddlers with Treacher Collins syndrome, and other children with cleft lip and/or palate and a variety of craniofacial anomalies.
* Molly is the nutritionist for Children with Special Health Needs at the Vermont Department of Health. As a member of the Cleft Lip and Palate/Craniofacial Team, and the Feeding Team, she sees children with cleft lip and palate and craniofacial anomalies from birth to age 21 and their families. She also supervises 12 regional nutritionists who provide nutrition services to families in their home communities.
* Hope is the co-founder and Executive Director of the Treacher Collins Foundation. She is the mother of two children, one of whom has Treacher Collins syndrome. She is the author of Children with Facial Difference: A Parents' Guide (Woodbine House) and is a medical social worker for Children with Special Health Needs at the Vermont Department of Health.
This booklet focuses on the nutritional, feeding and eating needs of children with Treacher Collins syndrome. However, this is not an all-inclusive text. While many children with Treacher Collins syndrome have similar nutritional, feeding and eating needs, every child is unique. All of the information is current as of the date of printing.
After reading the material presented, if you find that your questions are still unanswered, we strongly encourage you to contact your health care professionals. We at the Treacher Collins Foundation are eager to know if this booklet has been helpful. Feel free to send your comments to:
Hope Charkins, M.S.W., Executive Director,
Treacher Collins Foundation
P.O. Box 683
Norwich, VT 05055-0683.
Nutrition:
Nutrition is the science of how the human body takes in and uses nutrients for growth, energy and maintenance.
INTRODUCTION
Ideally, a child with Treacher Collins syndrome is followed by a multi-disciplinary (interdisciplinary) craniofacial team that has extensive experience in caring for individuals with Treacher Collins syndrome.
The feeding specialist and the nutritionist are usually members or consultants of the craniofacial team, or members of a feeding team. In addition, your child may have a local nutritionist or feeding specialist through your state Department of Health, Early Intervention Program, or school. Not every nutritionist or feeding specialist is familiar with the special needs of a child with Treacher Collins syndrome. If your child's nutritionist or feeding specialist does not have practical experience with this condition, ask them to contact their colleagues associated with your child's craniofacial team or contact the Treacher Collins Foundation.
WHO WAS THIS BOOKLET WRITTEN FOR?
This booklet, in question-answer format, was written for the parent of a young child with Treacher Collins syndrome. Your child may be a newborn, an infant, or a toddler. You will find information about nutrition, the role of the nutritionist and feeding specialist, special equipment that might be needed, and helpful tips. Not all of the questions will apply to every child. Pick and choose what is helpful for your child.
Treacher Collins syndrome...
is a hereditary condition that primarily affects the structures of the head and face. The physical features include:
* downslanting eyes,
* notches of the lower eyelids, most frequently 1/3 of the lid furthest from the nose
* underdeveloped cheekbones,
* prominent nose,
* broad mouth,
* small chin with a steep angle of the lower jaw,
* underdeveloped, malformed and/or prominent ears,
* and "sideburns: (licks of hair extending in front of the ears.)
Individuals with this condition frequently, but not always, have some degree of hearing loss, usually conductive. The nasopharynx maybe narrow. There are other problems that are more frequent in people with Treacher Collins syndrome than in the general population, but occur only in a minority of affected individuals. These problems include:
* cleft lip, with or without cleft palate,
* cleft palate alone,
* heart defects,
* and strabismus.
Children and adults with Treacher Collins syndrome are usually normal individuals with some physical differences of the face. (reprinted fromTreacher Collins Syndrome: An Overviewby Elsa Reich, p. 1. For additional information about Treacher Collins syndrome, particularly genetics, refer to this document.
Why do I need to be alert to my child's nutritional, feeding and eating needs?
Children with Treacher Collins syndrome are typically born with structural differences in the head and face (craniofacial.) These differences usually include a small lower jaw (micrognathia) and a receded lower jaw (retrognathia.). These characteristics may make it difficult for your child to eat or breathe. Many times a child may do well with just breathing until food is introduced, but coordinating the breathing and feeding is difficult or impossible. It is important that these structural differences be recognized and managed early by professionals who are experienced in working with children with Treacher Collins syndrome.
Children with Treacher Collins syndrome do not usually have neurological differences. However, the first three years of a child's life are critical for healthy brain growth. Maintaining an adequate airway and nutrition are extremely important during this time period.
TIP:
The longer it takes to address your baby's feeding problem, the worse it can become. If you need help with your child's feeding and/or nutrition, reach out as soon as possible!
How do I know if my baby is having a hard time feeding?
You will know if your baby is having a hard time feeding by observation. The first indication may be when feedings take longer than thirty minutes. When there is a lack of weight gain despite adequate fluid intake, this indicates that the infant is expending too many calories in the eating process. Also, watch for increased irritability during a feeding or signs of difficulty in breathing. These signs include:
* flaring of nostrils
* open mouth or gasping for air
* chest retractions
* change in color, that is, pale blueness around the lips or dusky facial appearance
When in doubt about your infant's oxygen level, he or she can be monitored with an oxygen meter while eating. This is done with a small probe placed over his or her large toe or finger that is "hooked up" to a meter (oxymeter.) If there are any indications that your baby's oxygen level is in question, the craniofacial nurse can do this for you on your first visit to the craniofacial center.
TIP:
>
The baby with Treacher Collins syndrome sometimes has difficulty with controlling large volumes (bolus) of formula or breast milk in the mouth because of the structural nature of the mouth. Drooling of formula or breast milk is common.
What happens if my baby cannot feed and breathe at the same time or is having difficulty breathing?
Management of your baby's structural differences can require a tracheostomy(a surgically created opening in the neck) to prevent breathing difficulties and lack of oxygen. Your baby might also need an oral or nasal gavage tube (soft feeding tube placed through the nose or mouth into the stomach) for introduction of formula or breast milk. Other reasons your baby may need a feeding tube include: if he or she is at a high risk for aspiration, that is, inhaling formula or food into his or her lungs; or he or she may not be able to take enough calories by mouth due to feeding difficulties.
A gavage tube should be used on a short term basis. Long term use may lead to oral aversion (baby dislikes having foods in or near his or her mouth.) The need for a gastrostomy tube (surgically or endoscopically placed tube into the stomach) is preferred for long term caloric maintenance.
You will want to consult with a feeding specialist and a nutritionist if your baby has a tracheostomy, uses a feeding tube, or experiences feeding difficulties. They will work together with you and your child. These professionals can provide you with information and techniques to increase your child's intake of formula.
How can I make my baby's feedings more pleasurable?
Feeding time should be an enjoyable time for both you and your baby. You should be seated in a comfortable chair and space without distraction, and approach the feeding with a relaxed attitude. Your baby should demonstrate a readiness to eat. You can stimulate your baby's interest in eating by:
* stroking your baby's cheeks and underside of his or her chin
* lightly touching his or her lips
* placing a small amount of formula or breast milk on the tip of your baby's tongue to see if he or she will simulate sucking
* offering your baby a finger or nipple to suck
TIP:
Avoid offering your baby large quantities (bolus) of formula or breast milk or placing the nipple too far back in his or her mouth. This will stimulate the "gag reflex."
What will the nutritionist and feeding specialist do?
The nutritionist and feeding specialist will work together with you to figure out the best feeding plan for your baby. To understand how this will happen, it might be helpful to explain the role of the nutritionist and the feeding specialist:
A nutritionist is a professional who has special training and experience in understanding how the human body takes in and uses nutrients for growth, energy and maintenance. This specialist can help you determine now and as your child grows how many calories your child needs each day so that he or she will grow and develop.
The feeding specialist, oftentimes a nurse, has special training and experience in feeding your baby or young child. This specialist can help you determine: the best feeding position or posture for your baby, recommend special feeding equipment, and provide you with on-going feeding support as your child grows.
How do I know if my child's nutritional needs are being met?
You will know if your child's nutritional needs are being satisfied if your child is gaining weight and growing in length and head circumference. There are standard growth charts for boys and girls on which your child's weight, height and head circumference measurements will be plotted. Outlined on these charts are standard growth curves. These curves show average rates of growth, below average rates of growth, and above average rates of growth. Most children have average rates of growth.
Often, the rates of growth for children with Treacher Collins syndrome are plotted at average for height and below average for weight and head circumference. However, when all three measurements are plotted over time, the child's weight, height and head circumference usually follow consistent growth curves if the child is feeding well and has sufficient weight gain. If your child's height to weight ratio is low, consult with your child's nutritionist and feeding specialist.
The nutritionist can tell you:
* if your baby is getting enough calories and nutrients for growth
* if your feeding schedule is correct
* ways to alter your child's formula and/or foods, if necessary, to increase his or her caloric intake
NEWBORN AND INFANT PERIOD
Can I breast feed my baby?
For many mothers of babies with Treacher Collins syndrome, breastfeeding will not be possible. There are a variety of reasons, usually structural: the baby's jaw does not come forward enough to adequately "latch on" to the nipple; the baby may be able to "latch on" but tires too easily from the effort; the baby may not be able to suck strongly enough due to a highly arched palate or a cleft of the palate; or, the tongue cannot come forward enough under the nipple. If a mother is not able to breast feed her baby, she can pump her milk and feed it to her baby through a bottle and/or feeding tube.
Can I feed my baby regular formula?
When you meet with the nutritionist, she will calculate the number of calories per day which your baby needs for adequate growth and development. If your baby can easily feed on breast milk or regular formula for adequate growth and development, the nutritionist will recommend that you continue with breast milk or use regular formula. If your baby is not able to easily feed on breast milk or regular formula, several different options may be considered:
* The nutritionist can recalculate the number of calories your baby needs and increase the calories in your baby's formula using a different dilution.
* The nutritionist can increase the calories in your baby's formula by suggesting a supplement, such as Polycose , to the formula or breast milk.
* Your baby's doctor may recommend a special formula with higher calories than regular formula.
* When a high calorie formula does not provide your baby with adequate weight gain or your baby's structural differences do not allow your baby to feed from a bottle, your baby's doctor may recommend a feeding tube.
NOTE: Do not change the dilution of your baby's formula without first checking with your child's nutritionist or doctor.
TIP:
Typical ounces fed for average weight gains:
Newborn: 1 1/2 ozs. per baby's pound weight per day
Second week of life: 2 ozs. per baby's pound weight per day
Average: 2 1/2 ozs. per baby's pound weight per day
What types of bottles and nipples are best for my baby?
Your baby may prefer a regular type of nipple, or one not best suited for your baby. A special nipple may be needed since the lower jaws of most babies with Treacher Collins syndrome are small (micrognathia) and receded (retrognathia,) and some babies have a cleft palate. Some nipples and bottles for babies with Treacher Collins syndrome are: Mead Johnson Cleft Palate Nipple (cross cut) ; Haberman Feeder now available in "mini" size for smaller mouths; Ross (needle-like nipple) ; and, the lamb's nipple. The feeding specialist on your child's craniofacial team can help you choose the best bottle and nipple for your baby and can also suggest ways to hold your baby that will make it easier for your baby to feed. Your child's nutritionist can help you decide on the best formula and caloric density for the formula.
My child's doctor told me he has diagnosed my baby with "failure to thrive." What does that mean?
"Failure to thrive" is a term used whenever a baby or child is not growing or developing as expected. Your child's doctor may have used this term to describe your child's physical and mental development. If your child has Treacher Collins syndrome and the doctor has diagnosed him or her with this condition, it does not mean that you are neglecting your child and his or her needs. Due to the feeding difficulties described above, newborns and infants with Treacher Collins syndrome can have a difficult time feeding and subsequently, gaining weight. Depending on how long this lasts, your child's development may or may not be affected.
TIP:
If your child is not adequately gaining weight, it is important to talk with your child's nutritionist and feed specialist.
TODDLER
My baby is starting to be interested in solid food. Can he or she eat the same foods as other children?
Congratulations! Your baby is turning into a toddler! Interest in solid foods is an important developmental sign. Some important points to keep in mind are:
* Due to your child's facial differences, it may take longer to master eating and self-feeding.
* Be aware, too, that your child may have an active "gag reflex." That is, he or she may gag more frequently as a result of the structural differences. Ask your feeding specialist about ways to reduce this "gag reflex."
* Chewing may be a problem with your child's small lower jaw.
* Since a narrowed airway is another characteristic of Treacher Collins syndrome, your child is at risk for having foods accidentally plug the airway.
Some children with Treacher Collins syndrome have suffocated and died from having food lodged in the airway, such as hot dogs, sausage, and other chunks of meat; cheese cubes; popcorn; peanut butter; and other foods which have thick shapes or a sticky consistency, such as mini-marshmallows, dried fruit, hard candy, whole grapes, and ice cubes. Consult with your child's nutritionist about the choice of foods to offer.
What can I do to help my child master eating and self-feeding?
As with any child, you want to pay attention to experimenting and finding the different textures and flavors of foods that your child prefers. Introduce several different types of spoons so your child can choose the one with which he or she is the most comfortable. Focus on providing him or her with pleasurable eating experiences by playing eating games and praise him or her for his or her fine eating appetite and eating abilities. All babies enjoy feeling their food on their hands, bodies and hair...and watching the food sail through the air landing on you, the walls, floor, etc.!
This booklet is dedicated to the memory of Olivia Camille Cloud.
This booklet was made possible by memorial donations to the
Treacher Collins Foundation as designated by Dennis and
Donna Cloud, Olivia's parents.
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