Parenting & New Baby Advice Blog

Archive for November, 2007

We all want our babies to be healthy, to grow and develop to their full potential as children and adults.  But sometimes a baby is not healthy.

Some children are born with genetic defects that affect one or more of the body’s systems, such as muscular dystrophy [the progressive wasting away of muscles], mental disorders, and color blindness. Down syndrome is a genetic birth defect that often involves many of the body’s systems, leading to physical problems and mental retardation.

Other children are born with genetic body chemistry disorders, such as phenylketonuria [PKU], which affects metabolism, cystic fibrosis, which affects the mucus-producing glands in the body, and Tay Sachs disease, which leads to progressive neurological deterioration and death at an early age.  Some genetic disorders, such as sickle cell anemia, hemophilia, , and thalassemia, affect the ability of the blood cells to perform their natural functions.

Sometimes something happened in the cells when the fetus was forming that altered the way the baby developed in the womb.  A child may have genetic defects that affect the size or shape of the body or of various organs, such as dwarfism, spina bifida [open spine], hydrocephalus, [head enlarged because of fluid accumulation], clubfoot, cleft lip or palate, and some congenital heart defects.

In other cases, the baby’s genes may be perfectly normal but something happened while the fetus was developing that caused damage.  Perhaps the mother had rubella [German measles], which affected the baby’s hearing or vision.  Some babies are born too soon, before they are completely developed.  Sometimes something happens in the womb or at birth that caused brain damage leading to mental retardation or cerebral palsy [which affects movement and posture].

Some children contract a serious illness, like meningitis, within their first few years that causes hearing loss or brain damage leading to disabilities.  Many defects show up immediately or shortly after birth or an illness, but some problems may not be obvious until the child is several months or even several years old.

Severe handicapping conditions when not treated, may result in stunted emotional and mental development as well as severe physical problems.

Although the death of any infant is tragic, the death of an infant from sudden death syndrome [SIDS] is perhaps the most traumatic.  SIDS has caused the death of infants since human race began.  In biblical times, it was called overlaying [because it was thought that the mother had lain atop the baby in her sleep]; it is now also known as cot death or crib death.  Even though the causes of most diseases that have afflicted the human race eventually have been discovered, SIDS remains a mystery.  It takes the life of an estimated eight thousand babies every year in the United States; based on this estimate, more than twenty babies in this country die of SIDS every day.  SIDS deaths occur in all families from all socioeconomic backgrounds, and from urban as well as rural areas.  Autopsies have shown no consistent findings to indicate a cause of death.  Although parents cannot anticipate or prevent SIDS, they need to be informed about it incase their child or the child of someone they know becomes a victim of a SIDS death.

Through the years, many theories about the cause of SIDS have been proposed, but none has been proved.  Some of the more commonly investigated theories are:

• Suffocation. This may be the most commonly accepted theory because the baby is often found with the covers over his face and heat.  However, enough oxygen is usually available even under bedclothes to prevent suffocation. Furthermore, SIDS babies have been found without bedclothes, clothes, toys, or any other objects near their faces.
• Pneumonia or some other unsuspected illness. Although some SIDS babies have had a cold, sniffles, or other respiratory problem within days of the death, not all SIDS babies have had symptoms of these or other minor illnesses before death.  Although the baby’s doctor and the parents may wonder if they missed something, often no illness sufficient to cause the death is found ay autopsy.
• Allergy. An allergy, especially to cow’s milk, has been thought to cause SIDS. But babies who have been breastfed exclusively also die of SIDS.
• Getting too cold.  The baby may be cold when found, but this is a natural condition after death rather than a result of a lack of clothing or covering.
• Child abuse or neglect, or an accidental injury. Although it happens less frequently now, parents of SIDS babies have been accused of child abuse or neglect.  These accusations were based on [a] the appearance of the baby [blood may pool at points where the baby touched the bed, so the baby looks bruised], [b] the unexpectedness of the death, and [c]the lack of an apparent cause of death.  These accusations make the death more traumatic because the questioning and treatment by the authorities only increase the parents’ normal guilt feelings.  The parents need support at this time, not accusations.  If the death was caused by abuse, neglect, or an accidental injury, evidence of this will be found at autopsy.
• Choking.  Sometimes regurgitated food, or vomitus is found in the baby’s mouth or nasal passages and the baby is thought to have choked on these substances.  However, the series of events occurring at the time of death frequently includes vomiting and stooling, so these findings are most likely results of death not it’s cause.
• Apnea [lack of breathing].  Many young infants have an uneven breathing pattern. Some even have periods called apneic episodes, when they do not take a breath, sometimes for longer than twenty seconds.  One theory is that in some infants, the breathing apparatus is so underdeveloped that the baby does not start to breathe again after an apneic episode.  Although babies with prolonged apnea may be at greater risk for SIDS, most babies with apnea do not die of SIDS, and most SIDS babies were never observed to have prolonged apnea.

Other theories include such things as minor birth defects, botulism, nutritional deficiencies, immunizations and lead intoxication.

The age at which SIDS most commonly occurs [two to six months of age] is a time in the baby’s life when a number of events are occurring-for example, the baby may be switched from breastfeeding to bottle-feeding; the baby may be receiving immunizations; or the family may be socializing more.  Researchers seeking a cause of SIDS have at various times tried to establish a connection between these and similar events and SIDS. For example, a baby may have died of SIDS shortly after a switch to cow’s milk, raising a question of an allergy to cow’s milk as a cause.  SIDS may have occurred within days of the baby’s receiving an immunization or being exposed to a person with a respiratory infection, which raised the question of immunizations and respiratory illness as a cause.  But no link has been found between such ordinary events in the baby’s life and SIDS.

Attempts to find a cause of SIDS are hampered by underreporting and misreporting of SIDS deaths.  Only recently has SIDS been considered a separate disease entity, which means that it now can be given as an official cause of death.  SIDS deaths have been, and in some instances still are, reported as caused by suffocation, pneumonia, and other ailments.  In some jurisdictions, an autopsy is automatic for any death of unknown cause.  In other areas, the parents must give permission for or request an autopsy.  Many parents do neither, and the death may be officially listed as from another cause.  Even if an autopsy is performed, there are few standardized procedures and reporting systems for SIDS and the findings may be reported differently from one area to another.  Because of this poor reporting, linking factors may be missed.A number of factors have been associated with a higher incidence of SIDS death. SIDS occurs more often in boys than in girls. [However, the overall infant death rate is also higher for boys than girls.] SIDS occurs more often in black babies than white babies. [Black babies in general are at a greater risk of death than white babies.] SIDS occurs more often in families with a low income. [but deaths from other causes do also] SIDS occurs more often in illegitimate births than in legitimate births.  SIDS occurs more often in low-weight babies than in those with higher birth weight. Babies from multiple births [twins or triplets] are at greater risk for SIDS than those from single births.  The incidence in SIDS in babies with a sibling who died of SIDS is slightly higher than the incidence of SIDS in the general population.  It is even higher for the twin or triplet of a SIDS baby.  SIDS appears to occur more often in crowded dwellings.  Mothers of SIDS babies seem to have had fewer prenatal visits than other mothers; they often have no prenatal care or care only in the last three months of pregnancy.  Mothers of SIDS babies younger than mothers of babies who die of other causes.  Most SIDS deaths occur between November and March. None of these risk factors has been established as a cause of SIDS and, as noted, many of these factors are also associated with a higher incidence of infant deaths from other causes.

The infant mortality rate from all causes has been declining in the
United States. However, the incidence of SIDS deaths has remained about the same. For all other causes of infant deaths, the incidence is higher for younger infants and decreases as the infant becomes older.  In contrast, few SIDS deaths, few SIDS deaths occur in infants younger than one month old; most deaths occur when the baby is two to four months old; and the incidence of SIDS decreases dramatically after the age of six months.  SIDS rarely occurs in babies one to two years old.

The first symptom of the disease is the death of the baby.  The death occurs quickly and without being noticed.  The baby apparently dies during sleep and without suffering.  In the few reported instances in which a SIDS death was observed, the baby simply stopped breathing.  In the most common situation, an apparently healthy baby is put to bed and is later found dead.  Parents have found their baby dead while sleeping in the same room, while driving with the baby in a car seat, or even while holding the baby in their arms.  In one instance, the baby’s doctor had just finished a routine examination when the baby stopped breathing.  The doctor, nurse, and mother were all present, but attempts to resuscitate the baby were not successful.  The autopsy revealed no cause of death except SIDS.

Dealing with Guilt

The parents of a SIDS baby also become victims of the disease.  Their grief and guilt may be overwhelming.  Unlike parents whose baby was ill before dying, the parents of a SIDS baby have no warning or time to prepare emotionally for the loss of their child.  Feelings of guilt and recrimination are all normal first reactions.  The parents immediately begin to wonder what they did or did not do to cause the death.  But-in the absence of risk factors-there has never been evidence that any special care or lack of it, can prevent or contribute to a SIDS death.

The emotional trauma experienced by the family frequently results in the family’s disintegration.  Rates of divorce, substance abuse, and serious psychological problems are high in SIDS families.  Fathers of SIDS babies may seek excuses not to be home, such as working longer hours.  They tend to internalize their grief and may have difficulty talking about the baby and his or her death.  Mothers frequently wish to talk about their loss but have difficulty finding someone to talk to.  They may undergo physical changes that are difficult to handle, especially if they were nursing the baby.  While fathers may have a strong desire to “replace” the lost child, mothers may be less inclined to have another baby as soon as possible.  In reaction to the SIDS death, both parents may become overly protective of their other or subsequent children.

The trauma suffered by other children in a SIDS family-or other caregivers, such as babysitters-may go unrecognized as everyone concentrates on the parents’ loss.  Yet siblings may suffer from the loss and guilt feelings, sometimes to the extent that psychological counseling is necessary. Siblings old enough to have helped care for the baby would have established a special bond to the baby that makes their loss very real and very big.  Also, they are apt to develop guilt feelings about what they might have done to cause the death, especially if they tended the baby shortly before the death.  Younger siblings, who probably experienced brief periods of jealousy when they wished the baby would go away, may have difficulty coping with a feeling that they somehow caused the baby’s death.  In addition, young siblings may witness attempts to resuscitate the baby without understanding what is happening.  They may interpret the pounding on the chest or other emergency measures as punishing the baby for having been bad.  When the baby is pronounced dead, young children may believe that the parents or emergency personnel killed the baby and will kill them if they misbehave or incur their parents’ displeasure in some way.

Finding Support

Efforts should be-and in some areas of the country are being-expanded to help SIDS families.  In 1972, the State of
Illinois Created The Sudden Infant Death Syndrome study Commission, which is unique in its dedication to helping families.  The primary concerns of this commission are to provide information about SIDS and to decrease the trauma experienced by SIDS families.  The commission’s activities in offering programs, counseling, and other assistance to SIDS families have served as a model for activities in other states.  Some states now have SIDS projects, and all SIDS activities and counseling are available through these projects.  In other states SIDS activities and counseling are offered through state public health departments.  Also, many parents of SIDS babies are active in self-help groups.  Parents and others who have difficulty in obtaining information  about SIDS can contact The National Sudden Infant Death Syndrome Foundation, Two Metro Plaza, 8240 Professional Place, Suite 205, Landover, MD 20785 [301-459-3388]; outside Maryland 1-800-221-SIDS] for more information. 

If this is your first baby, you may not wish to seem overanxious about your baby’s development.  Yet you may have some concerns based on what you’ve read about normal development or seen other babies accomplishing.

You spend many hours with your child , while your doctor spends only a few minutes at each visit.  Doctors tend to look for development milestones and may not focus on deficiencies.  If you express your concern as a general worry, your doctor may be apt to reassure you that the range of normal development is quite broad and different babies develop at different rates.

When parents suspect a problem they should write down what their concerns are.  Try to think of as many examples as possible.  When you take a list to your doctor, she will recognize your concern and begin thinking about specific causes to the behavior you observe.  Your doctor may want to wait and see if there are changes.  If she suspects a genetic disease related problem, she may recommend that you see a specialist at the nearest children’s hospital.

If your baby’s overall development seems delayed, your doctor may recommend that he be examined by developmental pediatrician who specializes in infant development.  If your doctor suspects a neurologic disorder, [a problem with the functioning of the nervous system] she may refer you to a pediatric neurologist.  In some cases, CT scanning [an X-ray technique that provides a computerized picture of an area of the body] may be performed.  This can reveal if there are tumors or other abnormalities in the brain.

If seizure disorders are suspected, an electroencephalogram [EEG] may be performed to record the brain wave pattern for analysis.  If hearing loss is suspected, a brain stem response study may be done by an audiologist.

An ophthalmologist may examine your child’s eyes foe visual function and for abnormalities.  Your child may also be seen by a physical therapist, who will evaluate such things as muscle strength and control, flexibility, balance, and agility.  A psychologist may assess your child’s personality and intellectual functioning, while a speech pathologist may look at how your child communicates to identify factors responsible for communication disorders.

It is sometimes difficult to determine the cause of developmental delays so parents may be asked to see a number of specialists and consent to their child’s undergoing a number of tests.  It may be wise for parents to select a “case manager”-a doctor or other professional who will act as liaison between parents and professionals.  Often this is the family pediatrician, but it may also be a hospital social worker or other professional who can explain medical procedures and who also has experience in dealing with parents concerns and feelings.  While parents can certainly act as their own case managers, they may find it easier, especially when they are under a lot of stress, to have one person overseeing the tests.

Some procedures are invasive and potentially harmful to the child.  Parents should understand why a specific test is being considered and what is involved.  Do not be afraid to ask doctors to explain, and never sign consent forms without feeling sure that you understand what is to be done to your child.  If you are unsure about something, wait until you have an opportunity to discuss it with your pediatrician.

A generation ago, children with severe handicaps often died of complications, if not of the handicap itself.  Handicapped children were consigned to institutions, where most had little chance of developing.  Handicaps were hidden away, not discussed.  Today, attitudes are changing.  Parents, are now encouraged to keep all but the most profoundly handicapped children at home.  Fewer full-time residential institutions are available and state and local agencies provide more technical and financial support services directly to families.  In most states, foster care is available for families who do not feel they can cope with the burden of a disabled child.

Technological advances in medicine have enabled doctors to surgically correct many problems that afflict children with Down syndrome, spina bifida, clubfoot, cleft lip and palate, and heart malformations so that these children can be more easily cared for at home.  Many formerly fatal handicaps, such as hemophilia, can be treated with medications or blood transfusions.

Even with support services, the burdens-physical, emotional, and financial-fall heavily on families with handicapped children.  Surgery or medication may not “cure” a handicapped child, although procedures that today are somewhat controversial for children, like cochlear implants, may provide to be “near cures” of the future.  Parents must take time to ask questions and become informed.  One of the best sources of information will be other parents of similarly handicapped children.

If no parent-support group exists in your area, consider starting one.  Names can often be provided by national organizations, medical specialists, professional in the field, and state and local health departments.  Contact with other parents, even parents in different locations, will give you a chance to discuss some problems relating to discipline and to relationships with peers and with family.  Contact with other families will give your handicapped child the opportunity to see others like himself and give you a chance to see what other handicapped children can accomplish.

Your local library may have the names and addresses of national organizations that are concerned with specific handicaps.  Medical services and assistance are provided by the state and local health and welfare departments [look in the telephone pages under your state agencies]. Departments of children and family services and handicapped children’s services may also provide information about funding programs and institutions.  Local service organizations, such as the Variety Clubs, Lions, Elks, Shriners, and Jaycees often provide scholarships and support hospitals and other programs that serve handicapped children.  

Support Organizations for Parents of Handicapped Children

• National Information Center for Handicapped Children and Youth,
  
  PO Box 1492 Washington, DC
  20013

  ; 703-522-3332 [Reference URL: delete before publishing: http://www.eric.ed.gov/ERICWebPortal/custom/portlets/recordDetails/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=ED255008&ERICExtSearch_SearchType_0=eric_accno&accno=ED255008]

• Family Resource Center on Disabilities, 220 S, State Street, Room 412, Chicago IL 60604; 312-939-3513 [Reference URL: delete before publishing: http://users.ameritech.net/frcdptiil/index.html]
• March of Dimes National Foundation,
  
  1275 Mamaroneck Avenue, White Plains NY
  10605

  ; 914-428-7100 [Reference URL: delete before publishing http://www.marchofdimes.com/]

• National Center for Education in Maternal and Child Health, 38^th and R Streets, NW,
  Washington DC
  20057; 202-625-8400 [Reference URL: delete before publishing http://www.ncemch.org/]
• Self-Help Center, A Program of Family Service of Champaign County, 405 South State Street, Champaign, IL 61820; 217-352-0099, self-help[at]prairienet.org [Reference URL: delete before publishing http://selfhelp.prairienet.org/directory.php#Disabilities]

A child with uncontrollable coughing makes a parent feel helpless. A chronic cough causes everyone in the family to lose sleep. And too often it seems like cough medicines just don’t do any good.

Coughing is a very important reflex. It’s the body’s way of clearing dust and mucous from the airways. If we don’t cough, or we take medicines that suppress coughing, there’s an increased risk of getting pneumonia. All the mucous, bacteria, and other material will remain in our lungs, forming a perfect place for an infection to start.

A sneeze cleans out dust and other particles that may irritate the sensitive lining of the nose and sinuses. Like coughing, sneezing is a reflex that can’t be controlled.

When your child coughs, she is clearing her lungs. The material she brings up has to go somewhere. Usually the coughing itself will bring the material up as far as the trachea [the tube that carries air to the lungs] and the esophagus [the tube that carries food to the stomach] separate if she can’t spit out the mucous [which most children can’t do], she will either swallow it or more likely, gag on it. This explains why children will sometimes vomit after a coughing spell. Since they can’t get rid of the mucous, they gag and vomit it out. Unfortunately, they usually vomit a lot more than just the mucous. Vomiting after coughing is not abnormal and should not cause you concern.

There are many cough medicines available in the drugstore. Some can be bought without a prescription, but the stronger ones require the approval of a doctor. There are two major drugs that suppress coughing. One is dextromethorphan-the over the counter cough medicines that end with the letters ‘DM” contain dextromethorphan. The other effective cough suppressant is codeine. Cough medicines that contain codeine or one of its derivatives usually require a prescription.

You may wonder when you should try to suppress your child’s cough. There are only two situations. The first is when her cough is “dry and hacking.” Because it’s not bringing up anything and not helping to clear out her lungs, this type of cough serves no useful purpose. The second is when the cough is so severe that it interferes with her sleep. Otherwise, it’s better that she cough.

A chronic cough may be a sign of :low grade” asthma. If your child coughs without any sign of illness and if there’s a family history of allergies or asthma, it’s worthwhile to discuss this with your doctor.

Coughing may last a long time after a viral illness [sometimes up to three months] and still not necessarily be a cause for concern. If your child is acting normal and doing all the “normal kid things,” you probably don’t need to worry. However, if your child shows other symptoms in conjunction with coughing or just doesn’t seem to be “bouncing back” to normal, it’s a good idea to check with her doctor.

Remember that coughing is a sign, not an illness itself. Curing a cough alone doesn’t mean that you have dealt with the underlying illness.