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Вы здесь » Улыбки наших детей » Литература и полезные ссылки » Буклеты с первичной информацией для родителей о расщелинах


Буклеты с первичной информацией для родителей о расщелинах

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http://www.cleftline.org/what_we_do/cpf_booklets

Booklet Summaries

Cleft Surgery
Help with Hearing
The First Four Years
The School-Aged Child
As You Get Older
Information for Adults
Feeding Your Baby
Genetics and You
Developing Good Speech

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Cleft Surgery
2001, 8 pp.

This full-color brochure provides general information about the primary cleft lip and cleft palate surgeries for infants. Complete with drawings explaining the surgical procedures and before and after photos, this brochure addresses general considerations about surgery, post-operative care, and a list of questions to ask your surgeon.

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Help with Hearing
2002, 9 pages.

This booklet provides information on types of hearing loss, middle ear disease and its treatment, and speech concerns resulting from hearing problems.

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The First Four Years
1998, 24 pp.

This booklet provides a basic explanation of cleft lip and palate and an overview of the care that a baby born with a cleft requires. After introducing the concept of a cleft palate/craniofacial treatment team, it presents information on feeding, hearing testing, care of the ears, speech development, dental care, and a brief discussion of what to expect at the time of surgery. It also addresses psychological issues for both parents and children, including advice about how parents can tell others about the cleft, sources of support for parents, and information about preschool education. The booklet concludes with a glossary of the terms that parents will most likely hear and see in the first few years of their child’s life.

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The School-Aged Child
1995, 29 pages.

This booklet is divided into two sections, one addressing the medical concerns of a school-aged child born with a cleft and the other providing information about the school experience for these children. The medical section contains information about surgery, dental care, and speech, providing simple diagrams of how the speech mechanism may be affected by a cleft palate. The section entitled “Making School a Good Experience” features information on hearing, potential learning disabilities, and social skills. The booklet concludes with a letter from a teacher about having a child with a cleft in the class. (Note: This letter has been adapted into a separate factsheet called Letter to a Teacher, available elsewhere on this website.)

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As You Get Older
2002, 17 pages.

This brochure describes medical treatment and social skills that may be necessary for teens born with clefts. There are sections on surgery, braces, speech, and ear/nose/throat concerns, as well as on social relationships and planning for the future. The booklet concludes with three essays written by teens.

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Information for Adults
2000, 25 pages.

This booklet is designed to empower adults to make informed decisions about what additional treatment, if any, they want to seek out in relation to their clefts. It offers information on surgical, dental, hearing, and speech options, as well as psychosocial perspectives from an adult man and woman who were born with clefts. It also includes advice on dealing with insurance companies.

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Feeding Your Baby
1999, 15 pages.

This booklet provides detailed instructions for feeding a newborn with cleft lip and/or palate. Starting with a discussion of the importance of the feeding experience for both parent and child, it goes on to explain why an infant with a cleft may have problems with feeding and what expectations parents may have for infant feeding habits. Recommendations about feeding positions, timing, and supplies are offered, with drawings and ordering information for the various bottles which are manufactured or can be adapted for babies with clefts. The booklet also includes some basic advice for mothers who are interested in breastfeeding and a brief discussion of post-operative feeding protocol. It concludes with a timetable for the introduction of solid foods into the baby’s diet.
Click here for an excerpt

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Genetics and You
2001, 11 pages.

This booklet contains a brief overview of genetic biology and a summary of what is known about the causes of clefting. It features a graph for affected individuals, parents, and siblings, showing each group’s approximate chances of having a child with a cleft. The booklet also details the steps involved in a genetic evaluation, which can help a family to determine its own particular recurrence risks. (The information presented in this booklet is only applicable to patients with isolated cleft lip and/or palate, not for patients with clefts that occur as part of a syndrome.)

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Developing Good Speech
2004, 10 pages.

This brochure describes additional procedures that may be needed to improve speech in people with repaired cleft palate. It explains surgical procedures including palate lengthening, pharyngeal flap, sphincter pharyngoplasty, and pharyngeal wall augmentation. Non-surgical prosthetic treatments are also described. (This information is most relevant to patients ages 4 to adult.)

Отредактировано martin luis (2010-07-13 17:01:43)

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Hope and Help are on the line.
800-24-CLEFT Cleftline.org
The First Four Years
Table of Contents
Foreword ..................................................................................................................................3
Background Information...................................................................................................4
Nature of Cleft Lip and Cleft Palate...................................................................4
Causes and Frequency of Cleft Lip and Cleft Palate .................................. 6
The Care of An Infant or Young Child with a Cleft .......................................7
Feeding an Infant with a Cleft.............................................................................7
Telling Family and Friends about the Baby’s Cleft.......................................8
Cleft Lip/Palate-Craniofacial Anomalies Teams.............................................8
Surgical Repair of the Cleft...................................................................................9
Care of the Ears ......................................................................................................10
Hearing Testing ......................................................................................................11
Speech Development ..........................................................................................12
Dental Care.............................................................................................................13
Psychological Aspects..........................................................................................14
Preschool Education............................................................................................ 15
Sources of Support for Parents................................................................................17
Parent/Patient Support Groups........................................................................17
Funding for Treatment.........................................................................................17
Mental Health Professionals ..............................................................................18
For More Information...........................................................................................19
Closing Words: Parent to Parent..............................................................................20
Glossary ..................................................................................................................................21
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Contributors to the Third Edition:
John Canady, M.D., Plastic Surgery
Michael Karnell, Ph.D., Speech-Language Pathology
Jeffrey Marsh, M.D., Plastic Surgery
Contributors to the Second Edition:
Joan Lynch, Ed.D., Speech-Language Pathology, Editor
Margaret Carlin, Ph.D., Audiology
John Corbett,D.D.S., Orthodontics
Donna Fox, Ph.D., Speech-Language Pathology
Linda Gage-White, M.D., Ph.D.,Otolaryngology
Jean Hood, M.D., Pediatrics and Dysmorphology
William Riley, Jr., M.D., Plastic Surgery
Jody Robinson & Laura Capik, Facial
Expressions: A Support Group
Sue Sheridan, Ed.D., Education
Joyce Tobiasen, Ph.D., Psychology
Contributors to the First Edition:
Julia Hobbs, M.A., Speech-Language Pathology, Editor
Oscar Beder,D.D.S., Prosthodontics
May Chin, Ph.D., Audiology
Leslie Holve, M.D., Pediatrics
Susan McMillan, Ph.D., Psychology
James Mulick,D.D.S., Orthodontics
Larry Severeid, M.D.,Otolaryngology
Ray Stewart,D.M.D., M.S., Pedodontics & Genetics
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2008 Reprint
Foreword
Anticipating the birth of a child is an exciting event. Generally, it is also a
time of mixed feelings. Excitement, anticipation, and joy alternate with feelings
of concern and apprehension. The child who is awaited so
eagerly usually is visualized as a physically perfect infant.
The birth of a baby with cleft lip and/or cleft palate is a shock to most families.
Many parents have never seen, or even heard about, an individual with a
cleft. Consequently, parents have many questions about what can be done to
help their baby immediately and in the future.The purpose of this booklet is to
provide some of these answers and thus help to lessen parental concerns.The
information has been prepared for the Cleft Palate Foundation by health care
professionals who are members of the American Cleft Palate-Craniofacial
Association, and by lay persons who are members of parent-patient support
groups. The authors have known many families who have experienced the
birth of a child with a cleft, and much of the information in this booklet is based
on their interactions with parents.This experience is shared in the hope that it
will provide guidance and support to other parents.Parents often say that their
concerns are lessened once they develop an understanding of cleft lip and
cleft palate.
The information in this booklet, along with that given to you by your own
health care providers, will help you understand how best to care for your baby.
Information will be presented in the general order in which parents may need
to cope with various situations. Parents should realize that this information
will be very general. Every child is an individual, and each requires care and
treatment specifically designed for his/her particular needs. Some of what you
read may not be appropriate for your baby. Likewise, your doctors may
recommend a procedure or a plan of treatment that may not be discussed in
this booklet. It is impossible to mention all treatment options; therefore, our
purpose is to give you an overview of cleft lip and palate.You should discuss
the details of your baby’s care with your own doctors. Technical terms are
defined as they are mentioned. A glossary at the end of the booklet defines
certain words you will be reading and probably hearing during discussions
with your baby’s doctors. Words in the glossary are bolded when they first
appear in this booklet.
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Background Information
Nature of Cleft Lip and Cleft Palate
If you are like most parents, you may be hearing about clefts for the first
time, so some explanation may be helpful. In simple terms, a cleft is a
separation of the parts of the lip or roof of the mouth which usually come
together during the early weeks in the development of an unborn child. A cleft
lip is a separation of the two sides of the lip and often includes the bones of the
maxilla (upper jaw) and the upper gum (alveolar ridge). It looks as though
there is a split in the lip and upper gum.

http://s42.radikal.ru/i097/1007/0d/3c37e77ed362.jpg

Figure 1 illustrates a normal lip and labels the parts of the lip and the
base of the nose. A cleft lip can range from a slight notch in the vermilion
(red portion of the lips) to a complete separation of the lip extending into and
distorting the tip and side (ala) of the nose.When there is a cleft lip, frequently
the alveolar ridge (upper gum) is also separated.

http://i082.radikal.ru/1007/68/987064166d80.jpg

As seen in Figure 2, clefts of
the lip may occur on one or both sides, with varying degrees of severity. If the
cleft occurs on one side, it is called a unilateral cleft lip (Figure 2 left). If the cleft
occurs on both sides of the lip, it is a called a bilateral cleft lip (Figure 2 right).
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http://s47.radikal.ru/i115/1007/3f/9a904ee8e30e.jpg

The palate is the roof of the mouth.The front part contains bone and is hard
(hard palate); the back part does not contain bone and is soft (soft palate).
Figure 3 (left) illustrates a normal palate and labels parts of the palate that you
may hear discussed. A cleft palate (Figure 3 right) is an opening in the roof of
the mouth. A cleft palate does not mean that the palate is “missing” although it
may sometimes look that way. It means that the two sides of the palate did not
join together (fuse) as the unborn baby was developing. Cleft palates can vary
in extent; an incomplete cleft palate involves just the back of the soft palate,
while a complete cleft palate extends the length of the palate to just behind
the gums (Figure 3 right).
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Because the lip and palate develop separately, it is possible for a child to
have only a cleft lip, only a cleft palate, or both a cleft lip and cleft palate.
When clefts of the lip and palate occur together they can involve one side
(unilateral) or both sides (bilateral) of the palate (Figure 4).

http://s09.radikal.ru/i182/1007/6b/f4315bda7368.jpg

Causes and Frequency of Cleft Lip and Cleft Palate
It is natural for parents to wonder why the cleft occurred and what may
have caused it. While many possible causes are being investigated through
research, no single cause of cleft lip, cleft palate, or both has been identified.
We do know that the majority of clefts appear to be due to a combination of
inherited factors (genes) probably interacting with certain “environmental”
factors. Clefting occurs very early in a pregnancy and represents a problem
over which a pregnant woman probably has no control.Most families want to
know the chances of having another child with a cleft. Because each family is
different, this question is best answered by your own doctor or by specialists
known as genetic counselors. These specialists may be physicians who
concentrate on the study of genetics and birth defects (dysmorphology) or
persons with a masters or doctoral degree in genetics. The Cleft Palate
Foundation has a booklet providing more information entitled The Genetics
of Cleft Lip and Palate. CPF can also refer you to a cleft palate team where
genetic counseling can be arranged.
Clefts of the lip and palate are among the most common of all birth defects.
While isolated cleft palate seems to occur in all racial groups equally, cleft lip
with or without cleft palate is most common in Asians. It is less common
in whites, and least common in blacks. Approximately one out of every 700
to 750 infants born alive in the United States has a cleft lip and/or cleft palate.
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The Care of an Infant
Or Young Child With Cleft
The first and primary concern is for your infant to thrive and remain healthy.
Your pediatrician and other specialists will work with you to insure your
infant’s good health and development.A baby with a cleft needs the same love
and care required by any other baby; however, there are some aspects of care
that differ, and these will be discussed.
Feeding an Infant with a Cleft
Infants with an isolated cleft of the lip or a minimal cleft of the soft palate
rarely have feeding problems. They can usually be fed like any other infant.
However, infants with a cleft of most of the hard and soft palate may have
difficulty creating adequate suction on the nipple, because of the opening in
the roof of the mouth. All of these infants need proper nourishment and a
pleasurable, gratifying feeding experience. For infants with any type of cleft,
as for infants without clefts, the two primary choices are breastfeeding and
bottle feeding.
While there are differences of opinion about breast feeding an infant with a
cleft, health care professionals agree that breast milk is the best food for
babies. Breast feeding an infant with a cleft requires adjustments in technique
and considerable patience. It may work for a baby with cleft lip but rarely works
for a baby with cleft palate. Nursing may need to be facilitated by using a
breast pump and then bottle feeding the pumped milk. If a mother chooses to
breast feed, her physician or a lactation consultant can help her establish an
effective nursing pattern. If these attempts fail, the mother should provide
alternate feeding. Prolonged frustration with feeding is not good for the
infant’s nourishment or mother-infant bonding.
The alternative to breast feeding is bottle feeding. If the mother’s milk is
not used, a formula with the appropriate nutritional composition will be recommended
by the infant’s doctor. A variety of nipples and bottles are available
for an infant with a cleft. The use of a squeezable bottle and a soft, premature
(premie) nipple with an enlarged opening usually works successfully.The larger
opening allows the milk to flow more freely. The nipple should be angled
away from the cleft, and the infant will feed better if held in a semi-upright
position. The infant should be burped frequently because infants with clefts
tend to swallow more air than those without clefts.
Although feeding an infant with a cleft may take extra time at first, the time
needed for each feeding should steadily decrease. If your infant requires
45 minutes or longer per feeding, he/she may be working too hard and burning
up calories required for weight gain. In this case, your physician or feeding
consultant should be contacted.
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A final word of advice about feeding your baby — be flexible. Try several
techniques before you decide which is best. The Cleft Palate Foundation has a
booklet called Feeding An Infant with a Cleft which provides more detailed
information. Remember, whichever method of feeding you use, that method is
successful if your baby is receiving adequate nourishment and gaining weight
steadily, and if you are comfortable when feeding your baby.
Telling Family and Friends about the Baby’s Cleft
At the time of your infant’s birth it is sometimes hard to find the right words
to explain to others about the cleft. As you learn more about cleft conditions
you will find it easier. Professionals and support groups for parents can answer
your questions. (See AboutFace on page 20 of this brochure). The better
informed your family and friends are, the easier it will be for everyone to see
your baby as a normal child with a physical difference which will require
surgery, dental work, and possibly speech therapy.
Simple, matter-of-fact answers to questions from children or adults about
your child’s cleft help to establish an attitude of normality toward your child.
For example: “He/she was born with a hole in his/her mouth. The process of
coming together did not finish in the womb. The doctors will fix it soon,” or
“He/she was born with a separation in his/her lip, but the doctors will fix it in a
few weeks.” Children, and even some adults, need reassurance that the “hole”
doesn’t hurt the baby. Answering questions honestly and openly in front of
your child as he/she begins to understand language will help him/her to
feel confident.
Taking pictures is usually an important event following the birth of a baby.
The cleft is a part of your new baby, and you do not want to deny that fact.The
pictures you take do not need to be like the clinical poses the professionals
need for their records. You should take pictures of this child just as you
would any child. Most children enjoy reviewing their own baby pictures; by
taking pictures from infancy onward, you have a means of reviewing with your
child his/her stages of development. From the attitude you take, your child will
realize that although he/she was born with a cleft, that is only a part of the
total person. This approach seems to foster the child’s self-awareness and
self-esteem.
Cleft Lip/Palate-Craniofacial Anomalies Teams
One of the more important decisions you will make regarding your child’s
care is the selection of the surgeon who does the initial surgery.Thus,very early
in your child’s life, you should be aware of Cleft Lip/Palate Teams and
Craniofacial Anomalies Teams. Such teams consist of groups of specialists
who are primarily interested in the care of children who have clefts and other
craniofacial anomalies.Most teams include representatives from the following
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fields: medicine (pediatrics/genetics, nursing, plastic surgery); speech and
hearing (audiology, otolaryngology, speech-language pathology);
dentistry (oralmaxillofacial surgery, orthodontics, pediatric dentistry,
prosthodontics); and psychosocial (social work, psychology, psychiatry). The
Cleft Palate Foundation suggests that parents choose a team based upon the
experience of both the team as a group and the individual specialists serving
on the team.The advantage of the team approach is that the child’s treatment
and care can be systematically and comprehensively planned.After examining
a child, the team members meet together and recommend a program for the
child’s treatment. The team coordinator then forwards the recommended
outline of treatment to the family and also to local doctors and specialists
who may also participate in the child’s care.Parents can locate teams by asking
their local physician or other health care provider, or by contacting the Cleft
Palate Foundation.
Surgical Repair of the Cleft
The objective of surgery on the lip is to close the cleft so that scarring
will be minimal, the appearance is natural, and the face develops normally.
The goal of palate surgery is to close the cleft so that the palate can function
normally during eating, drinking, and speaking.There are variations in both the
timing and the technique of surgical repair from surgeon to surgeon and team
to team. It is important that you are comfortable with your baby’s surgeon
and feel confident about his/her skills, experience, and credentials. Ask lots
of questions!
Lip Repair: Surgical closure of the lip usually occurs after the baby has
demonstrated steady weight gain, has been screened for other health problems,
and is not at unusual anesthetic risk.The repair may be accomplished in
one procedure, but sometimes it is done in two stages. Lip surgery sometimes
requires a hospital stay of one or two days to allow the baby time to begin
drinking sufficient liquids so that intravenous fluids can be stopped. In some
cases, the operation may be performed on an out-patient basis. After surgery,
the baby’s hands may be restrained with stiff material to keep them away from
the mouth and lips. Postoperative care will be discussed by your surgeon
and/or nurse.The lip scar will begin to look paler and more flexible within several
months, although it will always be visible.
Palate Repair: The palate is usually closed between eight and eighteen
months of age, but closure may be done earlier or later in life depending on a
variety of factors.Palatal surgery usually involves a hospital stay of one to three
days.Occasionally, a blood transfusion is necessary during palatal surgery. Ask
your surgeon how to plan for a safe transfusion, should it be necessary.
Sometimes a child will be fitted with an acrylic (plastic), removable palatal
appliance to be worn between various surgical procedures.
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Once again you will need to use special care in feeding your baby. Foods
need to be liquified, and the baby may need to drink from a cup for a few
weeks. Therefore, if your baby still drinks exclusively from a bottle, it is helpful
to familiarize him/her with drinking from a cup before surgery. As with lip
repair, the baby’s hands are usually restrained for a week after surgery.
These changes do not seem to upset most babies for the brief time they are
necessary.The doctors and nurses on the team will discuss postoperative care
in detail with you.
Before your baby is admitted to the hospital, there are a number of details
you will need to handle, including arrangements for accommodations and
meals, care of your other children, and the routine for your baby’s care.You will
need to check what the hospital provides in terms of diapers, formula, etc., and
what you need to bring from home. It is often helpful to bring the baby’s
“security blanket” or favorite toy.
Additional surgery will very likely be necessary as your child grows and
matures. Some of the areas which often require further surgery are the lip,
nose, gum, and palate. More information about operations in the older child
can be found in the Cleft Palate Foundation’s publications on the school-aged
child and the teenager.
Care of the Ears
Children with clefts of the palate have an increased risk of having ear
infections.These problems are the result of inadequate function of some of the
palatal muscles, which open the Eustachian tubes (small tubes connecting
the throat to the middle ear). When the Eustachian tubes do not open
effectively, air cannot enter the middle ear. This lack of ventilation causes fluid
to form and eventually accumulate in the middle ear.This condition is called
otitis media. The fluid can then become infected, causing the child to
experience a fever and painful earache (acute otitis media).
Because of the frequency of this problem, children with clefts of the palate
should have their ears examined by their primary care physician or an otolaryngologist
(an ear, nose, and throat or “ENT” specialist) within the first few weeks
of life. If fluid is present in the middle ear, medication may be prescribed to “dry
up” the fluid. If the fluid persists, and especially if there is a hearing loss, or if the
infant has multiple ear infections requiring antibiotics, a minor surgical procedure
called a myringotomy may be scheduled.This procedure consists of making
a small slit in the eardrum to drain the fluid. Following drainage, tiny tubes
may be inserted (Pressure Equalization or PE tubes) in the slits to allow air to
enter the middle ear and prevent fluid from reforming. Once the tubes are out,
these small slits heal readily and do not usually result in any permanent damage
to the eardrum. This operation, “myringotomy and tubes,” is usually performed
when the child is under anesthesia for lip and/or palate surgery.
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Parents need to realize that fluid in the middle ears does not always result
in symptoms like earaches that are easy to detect. However, constant fluid in
the middle ear creates a risk that the ear drum may be permanently deformed.
In addition, children with persistent middle ear disease are more likely to have
some loss of hearing which adversely affects speech development.
Consequently, children with clefts of the palate should have frequent ear
examinations.The first one should be scheduled no later than one month after
birth.Thereafter, the child should be reexamined on a routine basis.
Hearing Testing
Because of problems with ear infections, children with clefts of the palate
may experience some hearing loss which changes over time. Consequently,
it is important that parents make sure that their child’s hearing is tested
regularly during his/her early years. Preferably this testing should be done by
an audiologist who has the specialized training and audiometric equipment
to test very young children.
Parents often wonder how babies and very young children can have their
hearing tested. Audiologists have a variety of techniques for testing the hearing
of babies, even newborns. These same tests can be used with infants and
toddlers until they are mature enough to participate in other types of tests.
For these children, a test called ABR (Auditory Brainstem Response) can evaluate
the brain’s response to sound for each ear. If a baby should fail the initial
ABR screening, then a longer, full ABR test can be conducted.Results of this test
can determine if a hearing loss is present.Depending on how the test is done,
results may indicate whether the problem is in the middle ear or the inner ear.
Once a baby is between 4 and 7 months of age, testing called behavioral
audiometry can be done. In this test, the baby is placed in a quiet, soundtreated
room with the parent. Sounds are fed into the room through speakers,
and the baby’s response to sound is observed by the audiologist. Responses
like turning toward the source of the sound (localization) make it obvious
when the baby hears the sound. Some audiologists also utilize toys that light
up when the baby localizes the sound correctly; this technique is also very
effective. Once the baby is several months of age, a test called impedance
audiometry is very valuable. This test can measure whether the ear drum is
mobile. If the ear drum cannot move, there may be fluid in the middle ear space
behind the ear drum.
When a child reaches 2 1/2 to 3 years of age, a technique called play
audiometry can be used. In this test the child wears earphones and is trained
to do something whenever a sound is heard.For example, the child might drop
a block into a container whenever he/she hears a sound. By the age of 4 1/2
to 5 years, children can respond to the tests routinely utilized with adults.
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A young child who experiences some degree of hearing loss is at risk for
other problems. A hearing loss may cause problems with speech and language
development. In addition, a loss in hearing may result in a habit of inattention
which could lead to future language or learning problems.This is why frequent
hearing checks are important for young children with clefts of the palate.
Speech Development
The parents of an infant with a cleft often ask how well their baby will talk.
Speech-language pathologists have studied the speech development of many
children with clefts, and their findings may be used as a guide. If a child has an
isolated cleft of the lip, and no other problems, then speech should be normal or
close to normal.Approximately 80% of children with a cleft of the palate develop
normal speech once their palates are closed.Many of these children will require
speech therapy to achieve the best speech. The others may require further surgery,
or a prosthetic speech aid in addition to speech therapy, to improve their
speech. A major goal of palatal surgery is to ensure good speech quality at the
earliest age.The speech-language pathologist may consult with the surgeon and
other specialists in planning the type of palatal surgery and the best age to
schedule the surgery.
Children with clefts of the palate tend to develop speech and language a
bit more slowly than other children. They may not sound normal before palatal
surgery is performed,but they tend to “catch up”afterward.This “catch-up”process
often continues for four or five years, and speech therapy may be necessary
during some of these years.Children with clefts are also at increased risk for some
type of language disorder. For these reasons periodic evaluation by a speechlanguage
pathologist knowledgeable about cleft lip and palate is important.
The first evaluation should be scheduled by 3 to 6 months of age with follow-up
testing scheduled every 6 to 12 months during the first three to four years.
Parents sometimes wonder how a baby’s speech and language can be evaluated
before the infant even begins to speak. From birth onward, babies follow a
well-documented course of speech and language development. The sucking,
blowing, and chewing activities that all babies engage in involve the oral muscles
eventually used to speak, and the proficiency of these activities can be charted.
Months before babies say their first words, they already make many cooing and
babbling sounds, and they can communicate a variety of things to their parents
and caretakers.The rate and order of this development can be recorded.Once the
child begins to talk, the individual speech sounds and the words the child understands
and uses can be measured and compared to norms.Use of these developmental
milestones allows speech-language pathologists to recognize problems
that may require intervention before the child begins school.
Parents have a crucial role to play in their child’s speech development. We
know that the interactions between parents and their small children are interdependent:
each influences and is influenced by the other. One easy way to stimu-
12
late a child’s speech development is for the parent to follow the child’s lead.When
the baby makes a sound, the parent can imitate that sound, then wait for the
child to respond (count to ten silently) before repeating the sound. Once this
“game”is established, the parent may change the sound and see if the child will
follow the parent’s lead.When a child is imitating sounds,words usually follow.
Enrollment in either a “Parents as Teachers”or “Birth to Three”program can help
parents learn how to stimulate their infant.
Parents need to interact with their child with a cleft just as they would with
any child who is learning to talk.Encourage and respond to the child’s intended
meaning even if these first words sound different or have a nasal quality.Parents
who talk with their child about what is happening, play nursery games with
them, and read to them are providing good speech and language stimulation.
A final question parents have is whether speech therapy is always necessary.
Some children may need to be involved with their parents in a program of
speech and language stimulation, others may need therapy during the “catch
up”period, while still others may not require any therapy during the preschool
years. However, all children need to be evaluated routinely to determine their
individual need.
Dental Care
Children with clefts of the lip and palate need the same dental care as children
without clefts. Parents should wipe the first erupted teeth with a damp
washcloth after each feeding and begin routine brushing after solid foods are
regularly eaten. Routine dental care with a pediatric or family dentist usually
13
begins at three years of age. Children with clefts may also have special dental
problems associated with the cleft. A cleft may affect the alveolar ridge (upper
gum containing the teeth). Consequently, some teeth may be incorrectly
shaped, out of correct position, or entirely missing. There may even be extra
teeth. The teeth most commonly affected are the upper incisors and cuspids
on the side of the cleft (see Figure 5).
The dental treatment of children with clefts may best be coordinated
among several dental specialists interacting on a team that begins to follow
the baby at birth. The dental specialties may include pediatric dentistry,
orthodontics, oral-maxillofacial surgery, and prosthodontics. These specialists
are all concerned with the size and shape of the jaws, the position of the teeth
within the jaws, and the prevention of decay.To assist in planning treatment for
the child with a cleft, comprehensive dental records may need to be created.
These records include impressions of the upper and lower teeth, x-rays,
and photographs.
The pediatric dentist is trained to care for the special dental needs of the
child. These needs may include fillings, cleanings, space maintenance, and all
other types of routine care.
Special dental appliances (prostheses) may be fitted in the mouths of some
infants with cleft palates to assist them in feeding or to control the shape of the
upper jaw. At later ages, obturators (speech appliances) may be used to
close palatal openings and to provide assistance in obtaining better speech.
A prosthodontic specialist generally places these appliances in consultation
with other specialists on the team.
The orthodontist and the oral-maxillofacial surgeon usually are not involved
in the care of the young child with a cleft.Their roles in cleft care are discussed
in the Cleft Palate Foundation’s publications on the school-aged child, the
adolescent, and the adult.
Psychological Aspects
Clinical psychologists and other mental health professionals serve on some
cleft palate-craniofacial teams. Sometimes parents feel that seeing a mental
health professional means there is something seriously “wrong” with them or
with their child.This is not true.Most people need some help adjusting to having
or being a child with a birth defect.The mental health professional is on the
team to provide that help. Some teams routinely provide clinic services from a
mental health professional. These services usually include an interview to help
identify concerns or problems.Other teams may provide the services only when
they are requested.
Parents, children, or both may need the help of a mental health professional.
Parents can experience shock,anger, guilt,depression,and confusion following the
14
birth of an infant with a cleft.They may also have to deal with the stresses of hospitalizing
their child for surgery, coping with financial strains, and juggling child
care and work schedules. Brothers and sisters of the child with a cleft may have
mixed feelings about this new family member. Parents may be faced with new
problems involving child management and discipline. The team mental health
professional can assist parents in coping with these new problems of living.
Children with clefts may have adjustment problems of a psychological
nature starting as young as two years of age.They may have concerns about the
way other people react to their speech or appearance. Psychologists can
provide guidance to help children develop their self-confidence and deal
appropriately with teasing. By three years of age, children can learn to answer
simple questions about their appearance or speech. They can say, “I was born
with a split here (pointing).The doctor fixed it,” or “My mama says I’ll talk better
soon.” Children ages two to four can also experience fears about the hospital
and surgery.They may cry and get upset when they have to go to the hospital.
Sometimes children try to cope with these problems by acting shy or avoiding
people.Other times they may become more dependent on their parents or act
immature for their age. Parents can help their children with these problems by
requesting play therapy for the child or counseling education for themselves.
The clinical psychologist also participates with other team members in
assessing the child’s overall level of development.This information is especially
important when parents are planning for school placement. Being able to
perform successfully in school immediately increases a child’s self-esteem.
A cleft lip and/or palate poses several expected adjustment problems for
both the child with a cleft and his/her family. The role of the psychologist or
mental health professional is to assist the child and the family in coping with
these problems.
Preschool Education
Services for children with special needs and for their parents are expanding
and improving within the educational system. In 1986 Public Law 99-457 was
signed, requiring that special educational services be provided for children
from birth to three years of age with identifiable disabilities. Your state
education department has a system in place to meet the requirements of the
law. You may contact your governor’s office to obtain more specific
information regarding the implementation of PL 99457 in your state.
The services that may be provided by the public schools include an
assessment and a written Individualized Family Service Plan (IFSP) developed
by a multidisciplinary team and the parents. Case management services must
be provided for the child and parents. Special educational services may
include: special education, speech-language pathology, audiology, psychological
services, parent training, and medical services for diagnostic purposes and
early intervention.
15
Even if children with clefts may not require the specialized services mandated
by PL 99-457, parents still wonder about part-time or full-time preschool.
For all children, the preschool experience presents many advantages and perhaps
some disadvantages that parents should consider. However, the advantages
and disadvantages relate more to the type of preschool chosen than to
the concept of preschool in general. In order for a preschool experience to be
good for any child, the teachers, aides, and other caregivers must be caring
people who understand child development. Preschools should capitalize on
the fact that young children learn through play.They need to have pleasurable,
exciting, first-hand experiences with peers, materials, and adults. They need
time to explore, reflect, share, listen, and discover. The preschool experience
gives children the opportunity to relate to adults outside of the home and
become a part of a group with a daily routine.The child can experience a feeling
of being “special”outside of the family and look forward to going to a place
where people are waiting and excited to see him/her.When all of this is present,
the advantages of a preschool can be tremendous.
The preschool experience provides some advantages for the parents as well
as the child. Parents can observe their child in a group of other children and
can see not only how their child interacts but also how other children of the
same age function.Parents can observe other adults relating to their child, and
they can get advice from professionals trained to understand preschool children.
Also, preschool gives parents a time to get other work accomplished or
have individual time with other children in the family who may be feeling “left
out” because of the attention focused on the child with a cleft. Knowing their
child is in a good preschool can allow both parents to work without feeling
that they are cheating their child.
Before enrolling your child in any preschool, check the school thoroughly.
Make certain the atmosphere and activities will be pleasurable and enriching
for your child.Meet and find out about the teachers and other caregivers who
will actually interact with your child. Are these persons interested in understanding
your child, and do they appear excited about the possibility of having
him/her as a student? Do the other children appear relaxed and happy in their
play in contrast to the rigid classrooms where preschoolers are expected to
behave like children in grade school? Do other parents appear satisfied with
the preschool? If these answers are positive, then enroll your child on a trial
basis.When you find the right preschool, this experience can foster the development
of good communication skills, socialization with peers, and learning
through play.
16
Sources of Support for Parents
Parent/Patient Support Groups
Many parents who have a baby with a cleft lip and/or cleft palate feel
isolated and alone. They often say that it is very helpful to be able to talk to
other parents of children with clefts. In many parts of the country there are
local parent/patient support groups. These are organizations of affected
individuals and their families who meet to share common concerns and ideas.
These groups often prove to be a continuing source of support for the
individuals involved. AboutFace is one such organization with local chapters
throughout the United States and Canada (see page 20 of this brochure for
more information). Members of your local cleft palate team, your local health
care providers, or the Cleft Palate Foundation can put you in touch with
AboutFace chapters and other parent/patient support groups in your region.
Funding for Treatment
Financial resources to help pay all or part of the costs of treating a child with
cleft lip and/or palate fall into three general categories. Your own private or
group health insurance will usually cover a portion of the cost of treatment
after a certain deductible is met. When buying future insurance be sure to
check if the coverage applies only to surgery or if it also includes such crucial
aspects as dental care and services such as hearing testing, speech and
language testing and treatment, and psychological testing and/or counseling.
There are also federal and state programs such as Champus, Medicaid, and
Children’s Special Health Services (formerly called the Crippled Children’s
Program). Some private and nonprofit agencies provide funds or special
services to meet some needs of children with clefts.Your social worker or team
coordinator should be able to provide you with information regarding
financial aid in your area.
If a private insurance company initially rejects payment for cleft services,
you should discuss the case with the company. If the bill was rejected because
the reviewers did not understand the problem of clefting and the habilitation
procedures required, such a discussion could result in the company paying the
bill.You should contact your cleft palate-craniofacial team coordinator or your
physician to assist you in the appeal process.
17
Mental Health Professionals
As the parent of a child with a cleft lip, cleft palate, or both, you already
understand the shock of being told that your child has a birth defect that will
require treatment, possibly over a period of years. In addition you must still
make all the adjustments required of any new parent. The first step in coping
successfully is learning to acknowledge and accept the unfamiliar and painful
feelings that may seem overwhelming during the first few years.These feelings
are not unusual and will not go away unless you learn to deal with them.
Parents need to take time during the first year to begin to learn acceptance
and to give their feelings a chance to surface and heal.
Initially parents may seek comfort and support from their family and
friends. They can also speak to other parents who have children with clefts.
Knowing that someone else has faced what you are facing is often both
informative and comforting. However, if the emotional pain is not reduced
after the first six months of your child’s life, or if it significantly interferes with
your ability to function at home, at work, or in your relationships, you may want
to speak to a qualified mental health professional.Your cleft palate-craniofacial
team or your physician may be able to recommend someone. If paying for such
help is a problem, then the team coordinator or your physician may be able to
refer you to a mental health facility that accepts fee reductions or third party
payments. The emotional health of the parents is essential to their ability to
help their child.
18
Glossary
ALVEOLAR RIDGE – The bony ridge of the maxilla and mandible containing
the teeth (see Figure 3, page 5).
ARTICULATION – The process of forming speech sounds.
ARTICULATION TEST – An evaluation which provides information about how
speech sounds are formed.
AUDIOGRAM – A record of hearing levels or sensitivity.
AUDIOLOGIST – A person with a degree, license, and certification in
audiology (science of hearing) who measures hearing, identifies hearing loss,
and participates in rehabilitation of hearing impairment.
COLUMELLA – The central, lower portion of the nose which divides the nostrils
into right and left.
COMMUNICATION DISORDER – An interference with a person’s ability to
comprehend others or express themselves (usually in verbal form).
COMPREHENSION – Knowledge or understanding of spoken or written
language.
CONGENITAL – A disease, deformity, or deficiency existing at the time of birth.
CRANIOFACIAL ANOMALY – A visible, structural and/or functional difference
affecting the head (cranium) and/or face.
CROSSBITE – A dental condition where the upper teeth are behind the lower
teeth rather than in front of them.
DENASALITY – The quality of voice that lacks normal nasal resonance for
/m /n/ ng (“head cold” sound).
DENTAL ARCH – The curved shape formed by the teeth in their normal
position.
EARDRUM – Tympanic membrane which vibrates and transmits sound to the
middle ear.
E.N.T. – The abbreviation for ear, nose, and throat.
EUSTACHIAN TUBE – The air duct which connects the nasopharynx (back of
the throat) with the middle ear; usually closed at one end, opens with yawning
and swallowing; allows ventilation of the middle ear cavity and equalization of
pressure on two sides of the eardrum.
EVALUATION – Assessment.Test.
19
EXPRESSIVE LANGUAGE – Communication of one’s ideas, desires, or
intentions to others, usually through speech or printed words.
FISTULA – An abnormal opening.
GENETICS – The science of heredity (how things pass from one generation
to the next).
HARD PALATE – The front part of the roof of the mouth containing bone
covered by mucosa (pink “skin”).
HEARING IMPAIRMENT – A loss in hearing which may range from mild loss
to complete deafness.
HEREDITY – The total of the physical characteristics, abilities, and potentialities
genetically derived from one’s ancestors.
HYPERNASALITY – Greater than normal nasal resonance or vocal tone heard
during speech (escape of sound or noise through the nose).
HYPONASALITY – Denasality. A lack of normal nasal resonance during speech.
LANGUAGE DISORDER or IMPAIRMENT – Inability to communicate normally
and effectively due to problems with comprehension or expression of
language.
MALOCCLUSION – A deviation from normal occlusion, that is, incorrect
positioning of the upper teeth in relation to the lower teeth.
MANDIBLE – The lower jaw.
MAXILLA – The upper jaw.
MIDDLE EAR – The portion of the ear behind the eardrum. It contains three small
bones which transfer sound from the eardrum to the inner ear.
MYRINGOTOMY – A minor surgical procedure in which a small slit is made in the
eardrum to allow fluid to drain from the middle ear.
NASAL EMISSION or NASAL ESCAPE – An abnormal flow of air through the nose
during speech. Usually indicative of an incomplete seal between oral and
nasal cavities.
NASAL SEPTUM – The “wall” that divides the nose into right and left halves.
It normally joins the roof of the hard palate like an “inverted T”.
NASOPHARYNGOSCOPE – A lighted telescopic instrument used for examining
the passages in the back of the throat. Useful in assessing velopharyngeal
function.
OCCLUSION – Relationship between upper and lower teeth when they are in
contact. Refers to the alignment of teeth as well as relationship of dental
arches.
20
ORAL CAVITY – The mouth bounded by the teeth in front and the soft palate at
the back.
ORAL-MAXILLOFACIAL SURGERY – The specialty of dentistry concerned with
management of dental and skeletal deformities.
OROFACIAL – Relating to the mouth and face.
ORTHODONTICS – The specialty of dentistry concerned with the correction and
prevention of irregularities and malocclusion of the teeth and jaws.
OTITIS MEDIA – Inflammation of the middle ear with accumulation of thick,
mucous-like fluid.
OTOLARYNGOLOGIST – An “ear, nose and throat” physician specializing in the
diagnosis and management of head and neck disorders.
PALATAL INSUFFICIENCY – A lack or shortness of tissue that prevents the soft
palate from contacting the back of the throat (pharynx).
PALATE – The roof of the mouth including the front portion, or hard palate, and
the back portion, or soft palate (also called the velum).
PEDIATRICIAN – A physician specializing in treatment of children.
PEDIATRIC DENTISTRY –The specialty of dentistry concerned with the care of
children’s teeth.
PHILTRAL COLUMNS – Normal ridges in the skin of the central upper lip
connecting the peaks of the Cupid’s bow to the back of the nose.
PREMAXILLA – The small bone in the upper jaw which contains the upper four
front teeth. Normally connected with the side segments of the upper jaw
(maxilla) but separated in some clefts.
PROLABIUM – The central area of the upper lip beneath the center of the nose
(columella) and between the philtral columns.
PROSTHESIS – An artificial substitute for a missing body part.
PROSTHETIC SPEECH AID – A removable plastic appliance which provides a
structural means of achieving velopharyngeal closure (separating the nose
from the mouth).
PROSTHODONTIST – A dentist who specializes in providing prosthetic
appliances for oral structures.
PSYCHOLOGIST – An individual with the necessary academic training and
experience to be licensed to practice psychology as a profession.
RADIOGRAPHY – Photographic film or plate depicting images of internal body
parts. X-ray.
21
RESONANCE – Vocal quality associated with the vibration of air in the oral and
nasal cavities.
SOFT PALATE – The back part of the roof of the mouth containing muscles and
mucosa (pink “skin”).The Latin name for the soft palate is velum.
SPEECH-LANGUAGE PATHOLOGIST – An individual with the necessary
academic training and experience to be certified or licensed to diagnose and
treat disorders of speech, language, and communication.
SPEECH DEFECT – Deviation of speech from the range of normal.
SPEECH VIDEOFLUOROSCOPY – A tape recorded x-ray examination of the
speech mechanism during function, focusing on the soft palate (velum) and
walls of the throat (pharynx).Useful in assessing velopharyngeal function.
SURGERY – One of several medical specialties focused on the restoration and
repair of various external defects.
UVULA – Small, cone-shaped muscular process hanging at the back of the soft
palate.
VELOPHARYNGEAL CLOSURE – The closing of the nasal cavity from the oral
cavity which directs air used in speech through the mouth rather than the
nose. It requires interaction of the muscles in the palate and the back of the
throat.
VELOPHARYNGEAL INCOMPETENCE – Inability to achieve adequate
velopharyngeal closure despite structures that may appear normal.
VELOPHARYNGEAL INSUFFICIENCY – A structural or functional disorder
resulting in the inability to achieve adequate separation of the nasal and
oral cavities.
VELUM – The Latin name for the soft palate.
22
Closing Words: Parent to Parent
As a parent of a child with a cleft lip and palate and as a past president of a
cleft palate parents’society, I have learned much about clefts.Still I cannot offer
“words of wisdom” or absolute truths. However, from the depths of my heart
I can share my thoughts on your child with a cleft. Be strong, for it is from you
that your child will draw strength. Be knowledgeable about cleft procedures
and new medical advances so you and your doctors can decide and design a
program for your child in a relationship of respect and trust. Share your
experiences with others.You will find that you are not alone and discussions
spawn solutions to problems that we all share.
Most importantly, you will direct your child’s future.Make sure your child is
given all possible programs of development starting at birth so that by school
age he/she has progressed naturally into the mainstream.These programs are
available through the state and through school districts, but you as a parent
must make them work for your child. You must instill self-esteem and project
a bright future for your child. Learn by your mistakes, and strive for the best
medical and educational resources for your child.
Above all else, be kind and patient with yourself.While the birth of a child
with a cleft seems very overwhelming in the beginning, the experience of
countless parents testifies that this fact will not continue to dominate your
life.You will begin to see beyond the cleft to the love, the sense of fun and
mischief, the wonder and sensitivity, and all the traits that define the unique
character of your child.You will begin to appreciate that you can have the same
hopes and dreams for your child born with a cleft as for any other child.
23
For More Information:
Las publicaciones de la Fundación del Paladar Hendido también se ofrecen
en español. Favor de llamarnos para recibir copias en español.
This publication and many others have been produced by:
The Cleft Palate Foundation
1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514
1.800.24.CLEFT (or 1.800.242.5338)
919.933.9044
919.933.9604 Fax
info@cleftline.org
cleftline.org

Отредактировано martin luis (2010-07-13 16:59:42)

3

девочки нашла вот такую книжечку http://www.medprint.ru/editorPics/img49f1a40bd31bc.pdf, в принципе есть много ответов на интересующие вопросы,  я была бы очень рада если бы мне ее выдали прям в роддоме. Авторы Г. В. Гончаков, А. Г. Притыко, С. Г. Гончакова Кинула ссылочку сюда, потому как это первая веточка куда мамочки заходят. В книге ВСЕ начиная с "ПОЧЕМУ", описываются разные синдромы, объясняются принципы лечения и все понятным языком. Надеюсь, что это кому-нибудь поможет. А также есть фото деток ДО и ПОСЛЕ, что помогает понять, что все можно исправить.

4

mama_nata написал(а):

Авторы Г. В. Гончаков, А. Г. Притыко, С. Г. Гончакова

В первом издании, поначалу, это наша настольная книжка. Издание и новее и подробнее. Цитируем сайт:
Книги
ВРОЖДЕННЫЕ РАСЩЕЛИНЫ ВЕРХНЕЙ ГУБЫ И НЁБА
Гончаков Г.В., Притыко А.Г., Гончакова С.Г.  0 руб.
Издательство: ПРАКТИЧЕСКАЯ МЕДИЦИНА
Год выпуска: 2009 г., Обложка, 168 стр., вес: 204 г.
ISBN: 978-5-98811-103-0, нет на складе
Книга основана на опыте специалистов НПЦ по успешному лечению более 8 тысяч детей с врожденными расщелинами верхней губы и нёба. Даются ответы на все основные вопросы, возникающие в связи с данной патологией.
Представленное издание может стать важным этапом на пути к выздоровлению ребенка и послужить как родителям, так и врачам различных специальностей, ориентиром при выборе правильной тактики лечения. Книга содержит оригинальные иллюстрации.
Для челюстно-лицевых хирургов-педиатров и родителей.
Посмотреть оглавление и краткое содержание книги в формате pdf можно здесь: http://medprint.ru/editorPics/img49f1a40bd31bc.pdf
Контактная информация по вопросам приобретения книги: Научно-практический центр медицинской помощи детям с пороками развития черепно-лицевой области и врожденными заболеваниями нервной системы Департамента здравоохранения г. Москвы 119620, Россия, Москва, ул. Авиаторов, 38 Тел.: +7(916)153-38-61, +7(916)141-95-12 (с 9.00 до 19.00)   vasha-nadezhda.ru

5

mama_nata написал(а):

девочки нашла вот такую книжечку http://www.medprint.ru/editorPics/img49f1a40bd31bc.pdf,

Мне такую книгу в роддоме давали почитать, очень мне она помога в плане информации и марально после прочтения и просмотра фотографий "До" и "Посе" стало легче. Особенно когда рождение не совсем обычного малыша для нас было полной неожиданностью и для меня всё это что случилось с моим ребёнком было "тёмный лес". Так что рекомендовала бы всем роддомам обзовестись такой книженцией.

6

Ирин@ написал(а):

Так что рекомендовала бы всем роддомам обзовестись такой книженцией.

Полностью согласна! В моем роддоме книжечки не было.....

7

Моему ребенку уже 1.3, есть определенность (план лечения), появились силы посидеть в интернете (жалко, что не могла собраться с силами сразу). к своему удивлению, я открыла для себя огромное количество полезной информации о расщелинах в англоязычном интернете (раньше просто было не до интернета). Видя эту информацию, создается впечатление, что это не "редкая проблема", а решаемое затруднение - зарубежные врачи к этому готовы, открыты к общению. Как я поняла, есть даже люди, которые готовы приехать и лично помочь. Российские же ресурсы ограничены данным сайтом (огромное спасибо его организаторам) и http://www.vasha-nadezhda.ru/index.html (жалко, что форум не работает).
Если бы администратор сайта мог сделать так, чтобы ссылки на наиболее информативные ресурсы сразу бросились в глаза зашедшему на сайт!!! Т.к. когда родился мой малыш, бродить по форуму просто не хватало сил.
Короче, вот что я нашла (если это уже есть на сайте, прошу прощение за повтор).
http://en.wikipedia.org/wiki/Clefts
http://www.clapa.com/
http://www.childrenshospital.org/az/Sit … 034P0.html
http://www.ecoonline.org/en/patient_information/

Всем родителям желаю не падать духом, не расходовать душевную энергию на терзания. Все хорошо.

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АННА1 написал(а):

Если бы администратор сайта мог сделать так, чтобы ссылки на наиболее информативные ресурсы сразу бросились в глаза зашедшему на сайт!!!

у нас есть ветка:
http://ulybki.mybb.ru/viewforum.php?id=10


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