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
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,
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.
To find information and support, join the TREACHER COLLINS FOUNDATON!
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