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Congenital Disorders: Implications for Breastfeeding

A Leader can provide information and support to mothers of babies with special needs.

Cynthia Good Mojab, MS
Hillsboro OR USA
From: LEAVEN, Vol. 35 No. 6, December 1999-January 2000, pp. 123-28

We provide articles from our publications from previous years for reference for our Leaders and members. Readers are cautioned to remember that research and medical information change over time.

When a baby is born with a congenital disorder, mothering occurs in the context of the special needs of baby, mother, and family. While several types of disorders are discussed in the breastfeeding literature, many more are not. An understanding of the potential physical and emotional consequences of congenital disorders or anomalies and their impact on breastfeeding and mothering will help the Leader more sensitively and effectively provide information and support even when breastfeeding resources specific to a disorder are unavailable.

Dreams and Realities

With the conception or impending adoption of a baby come dreams and plans. It seems to be human nature to expect that pregnancy, birth, and child-rearing will follow the usual scripts of life. We generally anticipate that when we become mothers we will celebrate with family and friends, struggle with some sleepless nights, and nurture our babies as they grow. We imagine that we will help our children face the common difficulties in life and that we will be challenged as all parents are ordinarily challenged while raising our children. While it is not unusual for a woman to experience some anxiety regarding the well- being of her unborn baby, few mothers actually plan on being extremely challenged or on helping a child face extraordinary difficulties in life because of a congenital disorder. Although an adoptive mother may know in advance that her child has special needs, she is unlikely to know their full extent or to be able to accurately anticipate the nature and degree of their impact until well after the adoption. Her dreams of and for her child can be as abruptly shattered as the dreams of a biological mother upon discovering that her child has been born with a congenital anomaly. One mother recalled: "Picture this, if you will: you are a brand new mother. A strange doctor has just been to your bedside to tell you - brutally and without preliminary - that your cherished new little son has a serious birth defect. You try to understand and hear what is said to you. At no time have you been aware of any problem, even slight, connected with your pregnancy and your child. Suddenly there is this" (Jogis 1983).

Giving birth to a child with exceptional needs can happen to any mother, regardless of her age, racial or cultural heritage, socioeconomic status, level of education, health, or lifestyle. In the United States, one out of every fifty newborns is born with a significant congenital anomaly (Cohen 1984, as cited in Lemons & Weaver 1986). Babies born with a congenital disorder often show obvious symptoms and signs associated with congenital malformation, display neurological impairment, and/or manifest the appearance of a specific syndrome (Rubin 1975). The majority of children born with special needs will be identified at birth (Lemons & Weaver 1986). A Leader is likely, at some point, to find herself helping a mother who is breastfeeding in an unusually complex and challenging context.

Assessing the Impact

When a woman gives birth to or adopts a child who in some way does not meet expected cultural standards of health, function, development, or appearance, her experience of life, mothering, and breastfeeding are impacted directly by the congenital disorder and indirectly via individual and cultural factors. The nature and degree of the impact is as varied as congenital anomalies, people, and cultures. Factors with more direct impacts include issues related to the baby's diagnosis, how the disorder affects the baby's experience of health, ability, and appearance, how the disorder affects specific organ systems (e.g., respiratory, digestive), and, thus, breastfeeding, and how medical interventions affect breastfeeding. Indirect impacts on breastfeeding occur via the responses of the mother and other people to the child's congenital disorder and via the availability of accurate information and sensitive support. These factors can encourage or discourage the mother from initiating and persevering in breastfeeding under difficult circumstances. The responses of the mother, father, other family members, friends, health care professionals, and strangers will reflect both individual and culturally shared experiences and beliefs. A Leader needs to be aware that the nature of the mother's breastfeeding question may indicate a need for assessing some or all of these parameters.

The Impact of Diagnosis

The majority of mother contacts with La Leche League probably occur during the early weeks of mothering. In societies where breastfeeding is not the cultural norm, such as the United States, learning to breastfeed is a challenge for many mothers. However, the mother of a baby born with a congenital disorder learns to breastfeed while also learning to cope with her child's exceptional needs. When a mother first contacts the Leader, her baby may already have been diagnosed with a congenital disorder or she may only have vague misgivings that “something is not quite right." Breastfeeding difficulties can be among the first symptoms that suggest a baby has special needs.

Diagnosis is often experienced as a long and difficult process. It is not uncommon for several congenital disorders - differential diagnoses - to be under consideration for a time. While some disorders may be immediately and accurately diagnosed (e.g., cleft lip), others, especially rare disorders, may take years. Approximately one out of three people with a rare disease will not be correctly diagnosed for one to five years; one out of six will wait for over six years (National Organization for Rare Disorders 1989). A delay in obtaining the correct diagnosis will delay the information and support the mother needs to care for her baby and can negatively impact her ability to access appropriate medical care as well as specialized breastfeeding support.

The relative incidence of the baby's disorder may suggest the availability of specialized medical - as well as breastfeeding - support and information. Common congenital disorders are more likely to be well understood and more easily diagnosed than are rare disorders. A mother may more quickly find resources (e.g., written materials, parent support groups, community agencies, national organizations, specialized breastfeeding information) if her child's congenital anomaly is common than if it is rare. Some disorders are so rare that little research has been conducted on their cause, diagnosis, or treatment and no organizations have been formed to meet the needs of families. A mother may feel as though she is searching in vain for answers for her child and for support for her journey. There may be few answers and she may never find another person who has even a remote idea what her circumstance is like.

Impact on Health, Ability, and Appearance

For the Leader unfamiliar with a diagnosis, it is just a label. Understanding how a congenital disorder affects the baby's overall experience of health, ability, and appearance is an important part of understanding the needs of the breastfeeding mother-baby pair. Some anomalies are completely correctable; while others have uncertain or highly variable prognoses. A congenital disorder may threaten the baby's life and/or result in chronic or recurring illness, disability, or disfigurement.

Having a child diagnosed with a life-threatening or fatal disorder is a profoundly frightening experience. Sometimes a disorder, while not life-threatening itself, puts the child at risk for developing other disorders that are life-threatening. The mother who has reason to fear for her child's life may feel an overwhelming sense of responsibility and struggle between trying to create normalcy for her child while maintaining a necessary protective vigilance. This is something quite different from being "overprotective" or "overconcerned," which are judgmental labels that run the risk of discounting any mother's knowledge of her particular child and life situation, as well as of discounting differing cultural values. Mothers of babies and children with chronic medical concerns live regularly with stresses that mothers of generally healthy children cannot begin to imagine. Huge amounts of the family's resources - from emotional to financial - must be used to care for the child, many hours may be spent in doctors' offices and hospital waiting rooms, repeated hospitalizations may create both necessary and unnecessary barriers to breastfeeding, and there may be no relief in sight.

Congenital anomalies can result in a variety of disabilities of different severities, prognoses, and cultural meanings. Impairment of any organ system can create disabilities that impact the child's ability to breastfeed and to perform other physical and cognitive tasks. In addition to breastfeeding difficulties, the mother may face challenges in other aspects of mothering. Her baby may not behave "like other babies" and developmental milestones may be reached much later than usual or not at all. Individualistic cultures, like the dominant culture of the United States, place a high value on physical ability and personal accomplishment (Triandis 1994, 1995). The mother of a baby who is not “achieving" on time or in the usual ways must deal with both her child's special developmental needs and with personally and culturally based reactions to her child's difference.

Alterations in the baby's appearance can impact how the mother, other family members, friends, health care providers, and strangers respond to the baby. The interaction of culture and appearance will impact the kind of reactions the mother and her child experience within themselves and from others. Cultures that place high value on a narrow standard of physical appearance, such as in the United States (Pipher 1994), are especially difficult contexts in which to mother a child who is physically different and in which to be a person who is physically different. In addition, many societies, such as the United States, Japan, and Israel, have superstitions regarding visible congenital anomalies that place heavy psychological burdens on mothers (Crocker & Crocker 1969; Natsume et al. 1987; Dar et al. 1974).

Differences may be always visible, noticeable in some situations, or completely hidden. The mother of a baby who differs noticeably in behavior or appearance may receive more negative reactions than the mother of a child whose appearance is not altered by a congenital disorder, and may hesitate to attend a La Leche League meeting because of this fact. The mother of a child whose difference is hidden may find it harder to access support and understanding in certain circumstances, as her child seems "just fine” to others. It may also take her longer to realize that her child has special needs and to find resources to address them.

The Impact of Interventions

The baby may need a variety of interventions, each of which can impact breastfeeding: medications, life-support equipment, special diets, supplements, or feeding methods, surgeries, physical and/or occupational therapy, screenings, evaluations, psychological interventions, and special education. The mother may feel overwhelmed with her responsibility in deciding which interventions to accept for her child, arranging for treatment, carrying out home therapies, funding medical care, and breastfeeding under physically and emotionally difficult circumstances. The situation is even more challenging when there are no known treatments for some or all aspects of her child's congenital disorder or no consensus in the medical field regarding which treatment is the most appropriate. The mother of a child with exceptional needs may have little time or energy left over to seek out specialized information and support for breastfeeding.

Some disorders require surgery - sometimes before a baby is physically able to breastfeed - or hospitalization for other reasons. Breastfeeding can be a great comfort to both mother and baby during hospitalizations. The mother of a son born with imperforate anus said: "Nursing in the hospital has meant security and love during much pain; it was often the only way that I could help Adam. I wouldn't have been able to function as well as I did without that bond. It was sanity in the midst of insanity" (Brewster 1979). When a baby is unable to breastfeed, providing expressed milk can provide a sense of comfort as well as competence to a mother. However it can be difficult for mothers to find the support and information that they need to express their milk for extended periods of time or to breastfeed under such difficult circumstances. The cooperation of medical personnel may be essential if a mother is to initiate or continue breastfeeding. Yet not all health care providers are familiar with advances in breastfeeding research and may unknowingly make recommendations that unnecessarily interfere with breastfeeding.

Creative Counseling

Only a few of the thousands of congenital disorders that exist are discussed in breastfeeding books and pamphlets, such as Breastfeeding and Human Lactation (Riordan & Auerbach 1999), THE WOMANLY ART OF BREASTFEEDING, the BREASTFEEDING ANSWER BOOK, Breastfeeding a Baby with Down Syndrome, and Nursing a Baby with a Cleft Lip or Palate. These resources can be consulted when a mother has questions regarding Down syndrome (Trisomy 21), neural-tube defects, hydrocephalus, congenital heart defects, gastroesophageal reflux, pyloric stenosis, tracheoesophageal fistula, imperforate anus, cleft lip and palate, choanal atresia, phenylketonuria (PKU), galactosemia, congenital hypothyroidism, celiac disease, or cystic fibrosis. Some of these texts contain additional references and resources that may be helpful to both the Leader and the mother. A Professional Liaison Leader may also have additional references.

When a mother has questions regarding a congenital anomaly with which the Leader is unfamiliar and about which the Leader cannot find explicit information, creativity and critical thinking are in order. Information that applies to a familiar anomaly may apply to an unfamiliar one. To determine the appropriateness of the application of breastfeeding information from one congenital disorder to another, the Leader can critically compare the unfamiliar disorder with those discussed in the literature. One place to start is by assessing which of the baby's organ systems are affected, how their function and/or development are altered, how severely they are altered, and how these alterations seem to be affecting breastfeeding.

While the range of normal breastfeeding behavior is broad, breastfeeding is clearly easier when the baby's physiology permits certain abilities. Normal functioning of organ systems permits the baby to respond to feeding cues with active rooting and sucking reflexes, coordinate and separate the functions of breathing and swallowing, develop and sustain a strong and coordinated rhythmic suck-swallow sequence, create and maintain good intra-oral negative pressure (suction), receive and contain breast milk in the stomach, and digest and metabolize all the components of breast milk. Breastfeeding is also easier in certain states, such as when the baby is healthy; is responsive to the mother; communicates clear feeding cues such as hunger and satiation; has sufficient energy; feels intact or organized; experiences stimulation of the mouth, face, and head as pleasurable; and feels comfortable. With careful questioning, such as that modeled in the BREASTFEEDING ANSWER BOOK, the Leader can evaluate the presence, absence, or alteration of these abilities and states in the baby. She can then review the resources available to her to see whether similar impacts on organ systems and alterations in ability or state occur with other congenital anomalies. The Leader can inform the mother of any matches and discuss the possible application of related breastfeeding information and techniques to her situation.

The Leader should always be alert to the possibility that the mother has received incorrect breastfeeding information from family, friends, and health care providers. It is not uncommon for mothers of children with special needs to be told - inaccurately - that their babies will not be able to breastfeed. They may even be warned to not breastfeed their babies lest they become too attached (Brewster 1979). This warning is based on the harmful misconception that attachment is not important to or desirable for exceptional mother-baby pairs. It also presumes that the death or institutionalization of a baby can be made less painful if the mother and baby are less attached. In reality, the loss of a child is always painful and many babies that were expected to die or require extended care in a residential facility have gone on to prove such predictions wrong. If a mother does lose her child, her experience of breastfeeding may be among her most meaningful and comforting memories. Breastfeeding promotes a high degree of responsiveness, warmth, and love toward the breastfed child, and availability of the mother. These are among the mothering patterns that have been shown to enhance attachment security in all babies, including those with special needs (Wasserman et al. 1987).

Unless a baby has been diagnosed with galactosemia, an inability to breastfeed should never be assumed. Though it is not always possible and can be very difficult, even adopted babies older than ten months have learned to breastfeed (Starr 1993). While a baby may be unable to nurse in the usual way, he may be able to fully or partially nurse in an unusual way. It is often helpful to redefine normal to avoid imposing standards of behavior that are not helpful to the exceptional mother-baby pair. The mother can be encouraged to clarify what is normal for her baby. For example, it is normal for babies with cardiovascular and respiratory system disorders to experience fatigue while nursing, for babies with Down syndrome to have weak sucking reflexes, for babies with cleft palate to have difficulty developing suction, and for babies with phenylketonuria to have difficulty metabolizing all the components of breast milk. The Leader can search the breastfeeding literature for the specialized interventions that have proven helpful for these and other challenges to breastfeeding and that may help a mother's baby breastfeed in a manner that is normal for him.

Coping with the Challenge

When a Leader discovers that the baby of the mother she is helping has a congenital disorder, nothing can be assumed. The nature, severity, and consequences of congenital anomalies are extremely varied, even for identical diagnoses. It is impossible for anyone to fully comprehend the impact of a particular disorder on a given baby, mother, and family without actually experiencing it. Yet, the more fully the mother's situation is understood, the more effective breastfeeding counseling will be. While most Leaders do not have the experience of mothering and breastfeeding a child with special needs, personal and counseling experience with illness, hospitalization, disability, difference, and loss can be drawn upon. Leaders can increase the effectiveness of their help by examining personal and cultural expectations regarding how people cope. Although common threads can be found in how parents cope with the birth or adoption of a child with exceptional needs, every mother - and father - will adapt in a way that reflects previous life experiences and cultural heritage. There is no one right way to feel; there is no one right way to cope.

The constructive process of grief. Grieving is the process through which people are able to separate from a significant dream which they have lost; it stimulates personal growth and the reevaluation of values and attitudes (Moses 1977, 1983) that may have never been intentionally examined. Leaders may be familiar with a Western model of timebound grief in which people are imagined to sequentially pass through such emotional stages as shock, denial, anger, guilt, sadness, involvement, and adaptation as they come to terms with a loss, such as a death or the birth of a child with special needs (Kubler-Ross 1962; Bowlby & Parkes 1970; Parkes 1972, 1977). However, Leaders may not be familiar with a model of chronic grief that recognizes that chronic sorrow and anxiety are natural rather than abnormal reactions to the ongoing stressors, uncertainties, and losses experienced by parents of children with special needs (Olshansky 1962; Jackson 1974). Research supports the model of chronic grief; most parents experience peaks and valleys of a variety of emotions as they deal with periodic crises over the life of their exceptional child (Wilker et al. 1981). Unfortunately, other people - including family, friends, and health care providers - often fail to appreciate the ongoing challenges that parents face, expecting them to behave according to the time-bound model of grief and to have completely resolved feelings such as anger, guilt, sadness, and anxiety after a few months (Wikler et al. 1981; Leff & Walizer 1992). Cultural values such as those in Western societies can inhibit the display of the emotions of grief (Moses 1983). Consequently, a mother may find few people who view her grief as constructive and healthy and who are able to offer her the support she needs as she struggles to grow as a parent.

Common emotions.

Mothers cope both behaviorally and emotionally with the stressors they face in the context of mothering a child with special needs. Shock, denial, fear, anxiety, helplessness, anger, guilt, sadness, depression, shame, and isolation are among the emotions commonly experienced by parents of children born with special needs. While these emotions are painful to experience - and to witness - each serves an important purpose. For example, shock and denial often occur at diagnosis and during life-threatening crises; denial is central to the process of grieving as it provides time to gain the internal strengths and external supports that people need in order to continue to cope (Moses 1983). Feelings of anger, guilt, and depression are experienced because of challenges posed to beliefs regarding capability, ethics, causality, order, fairness, evaluation, morals, and rewards. These important feelings assist in the process of restructuring beliefs about the meaning of human existence - a prerequisite for actively coping with the impact of a congenital disorder (Moses 1981, 1983).

Being sensitive to the emotional state of the mother while giving her breastfeeding suggestions will greatly enhance the Leader's ability to help. The mother may need her emotions to be heard before she is able to absorb and use the breastfeeding information she is seeking. At times, the Leader may need to provide information slowly, repeatedly, and directly, such as by suggesting that the mother try a particular breastfeeding technique first, providing the mother with written materials, and arranging to call the mother back.

Cultural differences.

While models of coping, such as that of chronic grief, may fit the experiences of many parents of Anglo-American or Western European origin, they cannot be assumed to fit the experiences of parents of all cultural backgrounds. Many studies have demonstrated that coping styles are influenced by culture (Good Mojab 1996). Although the general feelings of grief seem to be cross-cultural, culture affects the manner in which grief is displayed, as well as how people parent, seek health care, and respond to appearances and congenital anomalies (Lewis & Rosenblum 1974; Kubler-Ross 1969; Crocker & Crocker 1969; Strauss 1990). Therefore, there is no reason to believe that mothers from different cultures will cope with the birth of a child with exceptional needs in exactly the same way. Because of such individual and cultural variations in coping, the rigid application of even the best model can result in harmful stereotypes. When the Leader realizes that coping models are potential patterns rather than molds into which every mother - or father - must fit, she will be better able to see and respond to the complicated realities, strengths, and vulnerabilities of exceptional mother-baby pairs.

Joys and strengths.

At times, the mother of a child with special needs may appear to be experiencing only the emotional states of grieving. However, emotions such as love, hope, joy, and pride are also simultaneously felt, regardless of a child's health, ability, or appearance. "Chronic grief does not prevent parents from feeling joy, happiness, satisfaction, and accomplishment. We love our son dearly and marvel at his every advance" (Jackson 1985). Mothers and fathers rise to the challenges of exceptional parenting with grace as well as awkwardness, with confidence as well as hesitation. They apply existing strengths and learn new skills as they respond to the special needs of their child. Parents often develop an impressive body of knowledge regarding their child's disorder and learn to effectively participate as full members of their child's health care team. They advocate for their child in medical and school settings, work to change discriminatory public policies, and volunteer their time in service organizations. In time, they may go on to mentor other parents who are just beginning their journey of exceptional parenting. Many national and local support organizations, such as MUMS (Mothers United for Moral Support, Inc.), NORD (The National Organization of Rare Disorders, Inc.), and Exceptional Parent magazine (see Resources for Mothers), were founded and/or are staffed by parents of children with special needs. The Leader should never underestimate the joy of parenting an exceptional child or the strengths that mothers and fathers bring to parenting, even in the midst of grief. "In many ways, my life has become richer because of Tamra's neurofibromatosis .... Now my rewards are different - the smile of a child selling lemonade to support neurofibromatosis research, the handshake of a parent who needed to talk, and the knowledge that, no matter how small our successes, we've fought hard" (Miyamoto 1996).

Dealing with the impact of a congenital disorder is an ongoing process unique to each individual. While common reactions, such as those discussed in this article, have been identified, it is unwise to assume that a particular parent will - or should - respond in any particular way.

When the Leader listens to a mother and echoes her understanding of the facts of the situation and the emotions expressed, she communicates much needed acceptance, respect, and readiness to meet the mother where she is - without judgment (see Compassionate Breastfeeding Counseling). Empathic listening enhances a mother's ability to evaluate and use the information a Leader has provided. Regardless of breastfeeding outcome, the mother of an exceptional child is unlikely to ever forget the acceptance and compassion shown to her as she sought support and information under extraordinary circumstances.

[text amended from printed version per author's instructions.]

Resources for Mothers

Specialized support and information are critical to the mother of a child with special needs. If a mother seems to be having difficulty finding resources, the Leader can encourage her to ask the baby's health care provider for written materials or referrals to local or national organizations. Library and internet searches may also yield beneficial information. The following are just a few of the many resources a mother may find helpful; each is a source of additional resources. Leaders outside the United States may find similar organizations or written materials in their own countries.

  • March of Dimes Birth Defects Foundation (national organization). 1275 Mamaroneck Avenue, White Plains, NY 10605, USA; Tel.: 914-428-7100 and (toll free) 888-663- 4637; resourcecenter at modimes.org (email); http://www.modimes.org (web site).
  • National Organization of Rare Disorders, Inc. (national organization): PO Box 8923, New Fairfield, CT 06812-8923 USA. Tel.:203-746-6518 and (toll free) 800-999-6673; orphan at raredisease.org (email); http://www.rarediseases.org (web site).
  • Mothers United for Moral Support, Inc. (national organization): 150 Custer Court, Green Bay,WI, 54301-1243 USA. Tel.: 920-336-5333 and (toll free) 877-336-5333; mums at net.net (email); http://www.netnet.net/mums/ (web site).
  • Building the Healing Partnership: Parents, Professionals, and Children with Chronic Illnesses and Disabilities (book) by Patricia Taner Leff and Elaine H. Walizer, 1992.
  • Exceptional Parent (magazine and resource guide): 555 Kinderkamack Road, Oradell, NJ 07649 USA; Tel. (toll free) 800-372-7368; www.eparent.com (web site).

Recreating Breastfeeding

Breastfeeding is more than nourishing a baby with mother's milk. The baby with a congenital disorder will be aware of as many aspects of his mother as his senses permit: the sound of her heart and her voice, the smell of her body, the feel of her breathing, of skin, and of being held in her arms, the taste of her milk, the sight of her face, and, perhaps most importantly, the knowledge of her presence. When a baby is unable to fully or partially breastfeed for any reason and for any length of time, his mother may still be able to recreate many of the sensory experiences of breastfeeding during supplemental feedings, such as by being the only one to feed her baby, holding him for all feedings, resting his cheek on her bare breast during feedings, maintaining eye contact, stroking and talking to him, and switching sides during feedings. If breastfeeding is contraindicated or must be limited, and a baby's sucking needs are not sufficiently met during feedings, his mother can also hold him any time he is offered a finger, knuckle, or pacifier to suck. In these ways, the mother can recreate many of the aspects of breastfeeding that contribute to the nurturing of her baby’s physical, emotional, and social development.

Compassionate Breastfeeding Counseling

Leaders can more compassionately and effectively provide breastfeeding information and support to mothers of children with special needs when they:

  1. Are aware of the dynamics of grieving and coping common among parents of babies born with congenital disorders.
  2. Review their own personal strengths, weaknesses, and beliefs regarding grief and their own significant losses.
  3. Realize that because feelings are not actions, are a fundamental part of being human, and are central to dealing with a loss, they do not warrant judgment or criticism.
  4. Stay within the guidelines that LLLI has set for the responsibilities and conduct of Leaders as they provide support and information regarding breastfeeding related issues of mothering.
  5. Listen and echo back their understanding of the information and emotions expressed by the mother; this allows the mother to clarify any misunderstanding and to feel heard.
  6. Respect differences in the mother’s values, needs, cultural background, and religious beliefs relative to their own.
  7. Use whatever language the mother uses to describe her child's special needs; a mother may be offended by any of the terms used in this article (e.g., birth defect, congenital disorder).
  8. Summarize the content of a breastfeeding counseling interaction before concluding it.
  9. Share with the mother the common reactions experienced by many parents as they cope with the birth of a child with a congenital disorder while recognizing the many variations that occur: "Many mothers of children with special needs have found it difficult to find the support and information they need to care for their children. How is this process going for you?”
  10. Talk with other Leaders and/or their District Advisor or PL Leader as needed about their own emotional reactions to a challenging helping situation; peer support is critical to any Leader's ability to compassionately provide breastfeeding information and support in difficult contexts.

Many Leaders find Human Relations Enrichment sessions helpful in developing skills such as those listed above. (Suggestions 1-3 are adapted from basic concepts and guidelines for facilitating grieving presented by Kenneth Moses, 1983.)

Words of Wisdom

Several mothers of children with special needs have shared their stories with me; their children's diagnoses include: velo-cardio- facial syndrome with DiGeorge sequence, Pierre Robin sequence, cleft lip, cleft palate, Down syndrome, and muscular dystrophy. Here are some of their thoughts on how Leaders can more effectively support them.

  • "Mothers are overwhelmed and need extra support. It is hard to understand why your child has special needs. It takes time to understand the condition and to realize how it will affect you and your child."
  • ”Listen to the mother. She above all knows her child and his problems. Don't be judgmental of concepts you don't understand. Be supportive and accepting."
  • “Relactation failed. More than anything, I missed not being able to comfort her in a way that only breastfeeding can. Don't make negative comments about formula and/or bottles. It only adds to the guilt. Many children with special needs will need them (especially with cleft lips or palates) at one time or another.”
  • ”Give mothers as much information as they want. However, they may not be ready to hear it all, so just let them know where they can find out more. Recognize the grief a parent experiences with the loss of the dreamed-about healthy child. See the child, not the special need."
  • ”Don’t underestimate the importance of establishing a nursing relationship rather than a pumping routine.”
  • "The most helpful thing that people do is to accept our daughter. They support us and our decisions. The most unhelpful thing is when they try to advise us based on their personal beliefs or ideas and have no idea what our daughter is really like."
  • ”Don’t try to make the mother "feel better." She has a right to feel sad; angry, scared.... Just listen and acknowledge her feelings. That's what she needs most."

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