You nursery will rival a hospital ward with its blinking machines, beeping gadgets, and monitors that alert you to your child’s heartbeat, breathing, and also nutrient intake. When at first confronted with durable medical equipment, many a parent is shocked and feels woefully inadequate. Fortunately, home healthcare agencies are at your beck and call and able to train you in the use of the machines until you feel comfortable with them. It is a wise idea to involve each and every family member in the training, including an outside caregiver such as a babysitter who has declared herself willing to be called upon to provide you with babysitting services for your child.

Your best course of action involves the services of a devoted social worker who will be there to oversee the collaboration of different service agencies and who will gently but firmly help you to step into the position of your child’s home healthcare provider. Here are some things to remember as you are ready to embrace this development in your child’s health needs:
? It may be necessary to change your child’s room to one that has more space for the medical equipment or more outlets. Most medical equipment will specify that an extension is not to be used, and thus you will need to have a direct plug to wall connection.
? Have a phone installed in your child’s room and keep emergency numbers and your physician phone numbers close by.
? Emergency medical procedures should be listed on placards which you laminate.
? Equipment troubleshooting steps need to be listed as well and taped onto the walls near the applicable medical equipment.
? Discuss earthquake, flood, or tornado preparedness with your physicians and get their suggestions of what to do in these emergency situations.
? If you live in areas affected by rolling blackouts, contact your power company to alert them to the fact that you have a family member living at home who is relying on medical equipment. This will get you off the main grid and most likely switched into the same grid as hospitals.
? Understand what interferes with your child’s health care equipment. For example, will your cell phone or laptop interfere with the heart monitor? A running washer or dryer, if too close to your baby’s crib, may interfere with the proper functioning of the child’s apnea monitor by providing false positive readings. Be mindful of these interferences and find ways to eliminate them.
 

Unfortunately, there is not easy way through it. There is not book you can read that will make it all better, nor is there a group you can join that will somehow get your through it and keep you on an even keel all the way through. In a situation where the death of a child because of a birth defect is a distinct possibility, you can only rely on two things: your faith, if you have one, and your inner strength. Help is available from a number of sources, but at the end of the day, in the dark of night, it is only you who is awake at two in the morning.

Where the possible death of a newborn is heartbreaking, the possible death of a young child is a gut wrenching experience for which there is no good way to prepare. Yet for your child’s sake, you must learn to work through your grief and help your child deal with her or his fear and also grief. If your child is undergoing medical treatment and away from the comforts of home, she or he is most likely scared and any and every distraction you can bring is welcomed. To this end, enlist the help of friends and family to sit with your child, read, play games, watch videos together, and also take meals and do homework in the child’s room.

Ask open ended questions and hear the clues that indicate your child’s need to ask questions and to receive reassurances. Whether your child is in danger of dying, or will need to cope with the reality that her or his health is temporarily being stabilized but that a relapse may threaten at any time, the question of death will most likely come up at some point. Depending on your religious convictions, this is a good time to share the hope of a future life you have: a life free from sickness and hospitals, where you will all be able to play together. Do not refer to death as a long sleep but instead refer to it as a kind of metamorphosis where the child will live on and will once again meet up with you.

In this setting, explain to the child that she or he will never be alone but that there are friends and family members already there who are waiting to take care of the child until you get there. Bring pictures of deceased relatives or friends your child may have never known but may be able to learn to love nonetheless. While it may appear ghoulish to the onlooker, there is no wrong way to prepare a young child for the possibility of dying to such an extent that the actual act no longer poses any fear and anxiety to the little one. The goal is to keep your child free from fear and anxiety, and every theologian will agree with you that the religious fine points of what happens after you die according to whatever set of holy texts you believe in matter little in the face of a child’s terror.

Generally speaking, forceps are little more than oversized tongs which are inserted into the vagina to extract an infant who has traversed far enough out of the uterus to just need that last little bit of help to make it into the world. Though never planned, forceps are a staple of most any birthing room in a well stocked hospital and are available at a moment’s notice if the child should present with sudden distress that requires immediate removal from the mother’s body. In the same way, maternal distress brought on by a sudden elevation of the blood pressure that may result in serious heart problems if pushing is permitted to continue, may also persuade the attending obstetrician to utilize the help of forceps.

The birth defects that have been blamed on forceps deliveries are far reaching and are directly attributable to a doctor’s ability to properly work with the instrument. Since the forceps are applied to the child’s head with the intent of pulling the infant from the mother’s body with the help of the oversized tongs, the danger of having an inexperienced physician press too hard is high. An immediate consequence is a skull fracture which in turn may lead to brain damage. Furthermore, if the pull on the child’s body is too strong for its delicate bones, the possibility of spinal cord injuries is real and every present, and a side effect of injuries to this area of the child’s body is the potential for the infant not being able to breathe on its own.

Considering the dangers and drawbacks, it is not surprising that many a physician shies away from the use of forceps and instead opts for the tried and true Caesarean delivery, yet this trend may cause more harm than good. Add to this the fact that with forceps an emergency birth may be affected literally within a few split seconds while a Caesarean requires preparation time which may permit valuable minutes to tick away, and you can see why the failure of obstetricians to permit themselves to be trained in the proper utilization of this medical instrument is actually contributing to the problems at hand instead of soling them. Therefore, when birth defects are caused during a forceps delivery the very fact that a physician may have been ill advised or inadequately trained to utilize this medical equipment needs to give pause to the medical establishment as a whole and then translate into decisive action.  Although not popular with parents and doctors, the need for training in the area of forceps delivery must be made a standard practice of anyone who plans to attend births at a hospital; after all, the last thing you want to endure as a mother who is about to give birth is the sudden knowledge that your doctor is unsure how to proceed when the fetal monitor alerts everyone in the room to a problem that must be dealt with now!

Although in general society would like to pretend that bullying in the context of physical deformities and abnormalities does not happen anymore, the sad reality is starkly different. Bullying is alive and well, and in the harshly defined pecking order that begins in the middle of elementary school and reaches critical mass during the middle school years, nothing makes bullying more inviting than a visible handicap.

When a visible birth defect invites bullying, you need to ensure that your child is not only able to deal with the event, but also knows to immediately speak to you about it. Here are some suggestions:
1. Your child needs to understand what bullying consists of; a little tease, a good natured joke, and even an insensitive remark do not necessarily constitute an example of bullying. Instead, it will take on physical forms such as hitting, pushing, intentionally tripping your child, calling her or him names, scornfully imitating the physical appearance of your child, such as by using an exaggerated limp, and then threatening your child with physical harm if she or he will tell anyone.
2. Your child needs to understand that a bully is a person who may have been mistreated by others and in turn is passing on this learned behavior. While this does not excuse the other child’s behavior, it will help your child to see past the threatening and intimidating behavior of the bully and recognize another scared or scarred kid underneath.
3. While your child needs to learn to deal with bullying, you have to get involved and speak to teachers, the principal, and the other child’s parents. This is not a time to spare feelings or mince words. Keeping your temper in check and the child with a friend or relative, you will need to convey succinctly, briefly, and decisively that you will not tolerate the bullying of your child to continue. I you meet resistance and the old “kids will be kids” attitude, do not be afraid to calmly state that unless immediate action is taken, you will entertain the thought of legal action against the school district in general, the school in particular, and also the principal and the child’s parents. If nothing else, this will get results.
4. Do not tell your child about this conversation but instead role-play how to act when bullying happens. Show how to defuse a situation by walking away, put a bully in her or his place verbally or by ignoring the child, and practice how to put on a nonchalant attitude when bullied.

In short, there is not scarcity of people who will try your patience and as your child grows older and begins to understand more about her or his birth defect and the effects it has, your child will also need to learn to deal with such people. When a child with a birth defect needs to be the bigger person, it is helpful to equip her or him with a healthy sense of humor and a positive outlook on life. You may do so early on, considering that the first people your little one will deal with are other children.

To this end, it is wise to being teaching tolerance, acceptance of diversity, and also forgiveness even when no pardon was asked. While your child’s life does not depend on it, any future success in both education and professional life, as well as a good emotional wellbeing most certainly do.

? Alert your child to the fact that just like she or he is different from other kids, all kids are different from one another in a myriad of ways. By coming to terms with being different and embracing this with a sense of uniqueness, your child will operate from a position of strength, not defensiveness.
? Teach your child that she or he is not a victim. A victim mentality is the worst possible outcome a child with a birth defect faces, and the sooner the child understands that with effort, skill, and the use of adaptive technologies and aides she or he will be able to perform to the fullest potential possible, the easier small people are to spot and deal with.
? In the same vein, make sure the child understands acceptable behavior from unacceptable behavior and knows that being the bigger person does not mean enabling someone else to be smaller. Instead, it means accepting the small minded individual for who they are while dealing with the inappropriate behavior.
? While it is tempting for a child with a birth defect to be open about the condition and explain it to anyone who asks, it is important to lay a foundation of boundaries, so the child knows that while she or he is welcome to talk about the condition, there is no obligation to answer a question posed unless it is within the context of a medical evaluation. Absent this setting, curiosity may be indulged or rebuffed, at your child’s discretion. While it may sound petty, this little tidbit of information puts your child in a very powerful position from which it is easier to be big.

Such an event occurred more than 10 years ago when women who sought to give their unborn children a good start in life by supplementing vitamin intake with over the counter prenatal formulas and also vitamin rich foods were warned about the potential for risking birth defects. Vitamin A was indicted as being linked to birth defects and the resulting frustration and in some cases downright panic called for a quick clarification of the statements made by officials and the media alike. Since then, the events that happened that long ago are largely forgotten, but the reality of an over-supplementation of Vitamin A still exists.

To ensure that you and your unborn child’s health are guarded, here are the facts about Vitamin A and its relationship to birth defects you must have:
? Birth defects caused by an overdose of vitamin A are described as primarily affecting the head and brain, such as mental retardation, microcephaly and hydrocephaly, and the external appearance of the child facial features, such as deformities of the ears, eyes, and palate. Other birth defects linked to vitamin A over-supplementation are heart problems and to a lesser extent spinal cord malformations.
? Not all vitamin A is dangerous, but only the kind that is termed as being “pre-formed” or synthetic. This kind of vitamin A may actually be added to certain foods as enrichment and is almost always notated on the list of ingredients as retinyl acetate or retinyl palmitate. It is also naturally found in organ meat, with the highest concentration being located in the animal’s liver.
? The safe kind of vitamin A is called beta-carotene and is primarily found in vegetables and fruits. While a high intake of even beta-carotene is not suggested, there are no known dangers associated with overdosing on beta-carotene.
? In spite of the findings that indicate dangers of vitamin A over-supplementation, the Federal Government has pointed out the body’s vital need for both kinds of the vitamin to further many bodily functions, including the overall health of the reproductive system.
? It is strongly suggested that pregnant women severely limit, or completely pause, their intake of animal organ meats. Furthermore, when taking prenatal vitamins, look for those that do not contain and overage of the synthetic vitamin A.  By and large, a pregnant woman in good health should not consume more than 8,000 IUs. If at all possible, look for supplements that offer vitamin A in the form of beta carotene.

The nuchal scan is considered a routine exam and will be performed right around the 12th week of pregnancy. It is the first indicator of Down syndrome in an otherwise healthy fetus. Checked is the area referred to in clinical terms as nuchal translucency, which is located by the neck of the developing baby. Amounts of fluid checked in that vicinity may indicate a higher risk for birth defects which fluid levels falling into normal ranges do not necessarily rule out the possibility, but instead lower the potential for Down’s. It is important to recognize that an increase of fluid levels detected when using a nuchal scan to show potential for birth defects is not a conclusive marker of the actual presence, and any discussions with respect to pregnancy termination or preparations for bringing a disabled child into the world should be reserved until further testing is done.

The follow up tests that can give better insight into the likelihood of the actual presence of a birth defects are an amniocentesis and also chorionic villus sampling; yet because these two tests carry with them the risks of harming the fetus or actually inducing a miscarriage, expectant mothers are usually reluctant to undergo the procedures unless medically deemed necessary. It is important to understand that the nuchal scan is only effective between the 11th and 13th week of pregnancy, thus a proper age determination of the fetus at the onset of pregnancy or as soon as possible thereafter is vital. The nuchal translucency will generally cease to be a useful measuring tool after the 14th week of gestation since the fetus will have developed to such an extent that any excess fluid is being drained away, causing the nuchal scan to come back negative even in cases of confirmed Down syndrome.
 

To further understand the possible birth defects affecting the heart muscle, here is a brief synopsis of the most commonly presented ones:
? Some infants will present with heart muscles that have insufficiently operating heart valves. In some cases these valves do not close as indicated while in other cases they are blocked or so narrowed that a steady blood flow is not possible to maintain. The good news is that this kind of heart related birth defect is easily fixed by an experienced surgeon and the prognosis for these infants is very good.
? A group of malformations of the left ventricle is known as hypoplastic left heart syndrome and is a dangerous condition. In some cases the child may die, simply because the heart’s left ventricle is too undersized to undertake the rigorous task of unceasing blood pumping. There are surgical techniques that have been successfully used to correct this situation and in severe cases a heart transplant may be indicated.
? Known as septal defect, this benign birth defect is characterized by the presence of one or more holes in the wall that subdivides the left and right sides of the heart. In the most benign cases, this birth defect will self correct while in the more severe cases, or cases where the heart is working too intensely to await a self correction, a surgeon will be able to simply apply an artificial wall.
? A birth defect which always requires surgery is the tetralogy of Fallot which is a group of heart related birth defects that always present together and will prevent proper oxygenation of the blood as well as that blood’s traveling to the organs. While it is possible for a child to survive this birth defect for a short period of time, surgery is required to ensure long term survival.

Your doctor will carefully monitor your fetus’ heartbeat and ascertain whether it is beating normally for its gestational age, or whether it is beating irregularly. In many cases the fetus can be treated via the mother with medication which will protect the heart and permit the child to grow to term so that she or he may undergo surgery – in some cases almost immediately following birth.

While in the past the presence of birth defects affecting the heart muscle were almost always death sentences, the advances of medical science has changed this and the survival rate as well as the long term outlook for children suffering from such abnormalities are better than ever!

Metabolic defects and structural defects are those in which a body part is missing or is formed incorrectly or can occur when there is a problem with how the body chemistry works.

One area of major defects that is common occurs in the heart. Another common structural defect is spina bifida. Two common metabolic defects are: Tay-Sachs disease and phenylketonuria (PKU).

Metabolic birth defects involve a missing or incorrectly formed enzyme. A baby born with a metabolic birth defect can have serious consequences including fatality.

Congenital birth defects are those that are caused by infections such as rubella, cytomegalovirus, syphilis or chicken pox.

Birth defects can also be caused by alcohol abuse during pregnancy as well as certain medications.

Birth defects can occur to babies who have healthy parents. The age of the parent has relatively little to do with the occurrence of birth defects as babies have been born to young couples.

Birth defects also happen to couples that have followed all instructions given to them by the obstetrician caring for the mom and still give birth to a baby with a birth defect. Couples who have no family history of birth defects and who may have other healthy children can still have a child with a birth defect.

According to the March of Dimes as many as 60% of all birth defects have no known cause so they cannot be predicted.

Chromosomal defects during the formation of egg or sperm can also cause birth defects such as Down syndrome.

Environmental causes of birth defects are when the mom-to-be is exposed to chemicals or diseases during her pregnancy or she abuses alcohol or takes certain medications that can cause birth defects.

There can also be multifactorial birth defects when more than one cause can be identified such as neural tube defects, cleft lip and palate.

In summary, birth defects can be attributed to defects in structure, function or body metabolism. Birth defects can occur to couples whom have no family history of birth defects and to those who even have other healthy children. There are some birth defects in which there is no known cause. Alcohol abuse and certain medications may be causes for birth defects and some infections can also cause birth defects such as rubella - especially if exposure is early in the pregnancy.

A study published in August of 2006, in the issue of Neurology, a scientific journal of the American Academy of Neurology stated that the epilepsy drug valproate is known to pose a higher risk for fetal death and also birth defects, more so than other commonly prescribed epilepsy drugs. Physicians prescribing for pregnant epileptic patients need to be aware of this information. According to the study, 20% of the pregnancies where valproate was used, there resulted death or birth defects of the skull, limb or brain with heart and lung problems also occurring.

In the study birth defect and death rates were lower for the drugs: phenytoin, carbamazepine and lamotrigine. These studies are consistent with other similar studies. It is important that this information be made available to pregnant women and those who treat them.

The connection between medication and fetal risk depends on several factors:

Type of drug

Dosage

How it is taken

Gestational age of the fetus

Response of fetus to the medication

Maternal diet and illness

Even women who avoid medication all together during pregnancy  have a 4% chance for birth defects so avoiding medications will not necessarily mean that you can prevent all birth defects. Medication is certainly not the only cause of birth defects.

Known Teratogenic drugs that pose birth defect risk:

ACE inhibitors (angiotensin converting enzyme)

Angiotensin II antagonist

Isotretinoin (acne drug)

Alcohol

Cocaine

Vitamin A in high dose

Lithium

Male hormones

Certain Antibiotics

Certain anticonvulsant medications

Certain Cancer fighting medications

Certain rheumatic medications

Certain thyroid medications

Thalidomide

Warfarin (blood-thinning)

Diethylstilbestrol hormone (DES)

There are other teratogenic drugs that lack medical studies; even illegal ones such as cannabis and amphetamines that may also cause birth defects but have not had studies to show conclusively that they do.

Medications can receive risk classifications so that physicians can have guidelines for prescribing for pregnant women. Australia has such as medication risk classification system. They have different categories for medications that apply to recommended doses and how safe they are for pregnant women to take. Such a classification system would be helpful for physicians in all countries to be able to refer to when making medication decisions. The classifications include those drugs that have been proven to increase the risk for birth defect, drugs lacking in data for safety in pregnant women, those drugs where there have been animal studies showing an increased risk for birth defects. Other categories include such things as known drugs that cause birth defects but whose health benefit to the pregnant woman outweigh the risk to the fetus for birth defect, drugs that cause harm to the fetus without causing birth defects and whose effects can be reversed, and those drugs that have a high risk for causing birth defects and should not be used in pregnancy.