FACING MEDICAL DIFFICULTIES
"I have to live with what I decide."
--M. P. N.
When either you or your baby faces a medical difficulty, you feel confused, distraught, and frightened. Worried or angry, you may misunderstand information, jump to conclusions, or confuse old wives' tales with facts. You need to be clear about everything your doctor is saying and to stay well informed.
Doctors handle medical difficulties in different ways. Your doctor may give you general information or make sweeping statements in an attempt to simplify information so you understand it. A pessimistic doctor will exaggerate the incidence or severity of problems and may make things sound worse than they are.
Protective doctors tell their patients very little. This lack of information will leave you feeling stupid and confused. A doctor may expect you to go along with a decision without questioning it.
Help your doctor to treat you with intelligence and respect. Ask questions! You have a right to information. Appendix E lists several questions to ask. If questioning your doctor makes you uneasy, have a confidant, partner, or PREGNANCY AIDgency volunteer ask questions for you.
Make sure that you receive complete information about the medical problem, and expect specific answers to your questions. Ask to see literature on the problem, and read it. If you don't understand it, ask a nurse, your doctor, or another doctor to explain it. If the material is even slightly outdated (three to five years old), request current information.
Your treatment should reflect the latest research. National groups that deal with your problem are familiar with up-to-date material and the latest treatments. These groups may also be able to refer you to hospitals or physicians that specialize in treating your problem. Appendix H lists many of these groups.
Georgette was three months pregnant with her fourth child when doctors diagnosed Hodgkin's disease, a cancer of the lymphatic system. Since chemotherapy would probably cause the spontaneous abortion of the baby, three doctors recommended abortion followed by chemotherapy or radiation treatment.
Frightened, Georgette and her husband prayed and sought the prayers of others. Eventually, at a large, nationally known cancer treatment center, a specialist suggested that Georgette receive small dosages of a single anti-cancer medication, deliver her baby two months early by Cesarean section, and then receive more aggressive treatment. When Georgette's doctor refused to administer this "radical" treatment, she found another who would. Georgette gave birth to a healthy daughter, then began her treatments. Today mother and baby are doing well.
RECORD INTERVIEWS WITH HEALTH CARE PROFESSIONALS
Ask your doctor's permission to record the advice you hear. Or ask the physician to write down, legibly, all instructions, statistics, reference material, predictions, and any other information. Or have the doctor speak slowly and write it down yourself. Read what you have written back to your doctor. Ask about unclear or missing information, and make corrections or additions.
Suppose your doctor is uncooperative and says, "I'm too busy," or "You wouldn't understand." Suppose you're dubbed a "difficult patient" or a "bother." Consider switching doctors. You have a right to ask questions, receive answers, and record information.
At home, review your interview with a confidant, partner, or PREGNANCY AIDgency volunteer. Do you understand it? What other questions do you have? Don't be afraid to keep asking questions until all of your concerns have been addressed. You have a right to know the facts and make your own decisions.
Always obtain a second and possibly a third medical opinion of how to best treat your problem. Don't ask your doctor for a referral! Your physician may refer you to someone with views similar to his or her own, or may call the doctor and review your case and prognosis before you set foot in the office. Ask a nurse, confidant, PREGNANCY AIDgency, or support group dealing with your problem for a referral to another doctor for a second opinion, or use the phone book to find one. Don't tell your primary doctor that you are seeking a second opinion. Tell your doctor that you'll call back with your decision.
Don't tell one doctor what another doctor told you. Allow each doctor to make an unbiased diagnosis.
Ask each doctor the same questions and record the answers. If you've had tests done, ask each doctor to review the test results with you. Tell the other doctors you've consulted that you'll review what they've said and get back to them.
In the privacy of your home, compare the various opinions and discuss them with your partner, confidant, or PREGNANCY AIDgency volunteer. What are the similarities? Are there any radical differences? Are the opinions based on current information? What options does each doctor suggest?
Return to the doctors and ask them about the differences in treatment without naming the other doctors you consulted. One doctor's name may influence another doctor's opinion. Record what each one says. Choose a doctor who seems optimistic, helpful, and knowledgeable, and who will treat you as you wish. Have any necessary records or tests sent to your new doctor.
Edith and Tracy both had doctors who refused to treat them unless they got abortions.
Without knowing that she was pregnant, Edith had undergone radioisotope testing. Her doctor predicted that her baby was "a severely damaged cretin." Edith had suffered extreme guilt, depression, and psychological problems over a previous abortion. She did not want to go through the mental turmoil again.
Mother of one child, Tracy had severe heart problems and two metal valves in her heart. Six doctors predicted that her second pregnancy would kill her. Tracy didn't care. She wanted her baby to have a chance.
Both women found other doctors, with Tracy calling every physician in the phone book before she found one who would treat her heart condition while managing her pregnancy. Both women had healthy babies, and are doing well today.
If you can't find a doctor to agree with the treatment you want, have a legal form prepared. This form should state the medical facts as the doctor sees them, a prognosis, and recommendations. A few sentences will clarify that you have read and understood the doctor's statement, but are choosing not to follow the doctor's suggestions. By taking over your own treatment, you free the doctor from malpractice suits should anything go wrong. To be treated, you must sign the form. Even though you do sign, your doctor still must treat you professionally, within the guidelines of good medical practice.
Today, many hospital tests are available to the woman and baby facing medical difficulties. Your doctor should schedule these to determine whether a suspected problem exists and to establish its severity, if possible. Never make a decision based only on opinion. Your medical problem may require any number of tests. A later section of this chapter discusses the more common tests performed during pregnancy.
Ask your doctor if there are any risks involved in the tests you will be taking. What are the risks? Can they be minimized? Are there alternate tests?
After you've agreed on a certain diagnostic test, you should first take the test, and then discuss the results with several doctors before deciding on treatment. Don't agree to a certain treatment before you have even taken the test! For example, if you can't have prenatal testing unless you agree to abort a baby having certain problems, either don't have the testing or don't sign any forms stating you'll choose abortion. Always have a test done and discuss the results before deciding on treatment.
Always take the time to read a medical consent form before you sign it. Don't take anyone's word for what it says. Question any terms you don't understand before signing.
Testing has its limitations. One limitation of test results is that they may indicate the presence of a problem, but not its severity. For example, tests may indicate that you have toxemia, but cannot predict how your body will handle the disease. A doctor should always hope for the best outcome while treating you to prevent the worst.
Also, tests occasionally give inaccurate results. Perhaps technicians administered the test improperly. Sometimes testing procedures, conditions, or equipment is faulty. A doctor may misread poorly written test results, or a lab may confuse your tests with those of someone else. Other accidents can happen. If test results are unfavorable, request a retest or additional tests.
Nora's amniocentesis indicated that her unborn son had a genetic defect causing severe disability. Her doctor urged her to have an abortion. Nora and her husband were considering all their options, including parenting, foster care, institutional care, and adoption, when a friend suggested a retest. The friend had aborted a perfectly healthy baby on the basis of an erroneous first prenatal test result. Nora's second amniocentesis indicated that the baby was healthy.
MAKING AND ACTING ON YOUR OWN DECISIONS
Despite most medical difficulties, you will probably be able to have your baby. No one can guarantee that your baby will be healthy or that you will not face some difficulties. However, statistics do prove that with proper medical attention, you can almost always give birth without severe damage to your body.
Calling her an "idiot," Rae's doctor refused to treat her when she would not abort her six-week pregnancy and begin chemotherapy for a cancerous lump under her arm. Rae's husband agreed with her doctor's assessment. Rae had to search for another doctor.
Although surgery found the cancer far advanced, Rae refused radiation treatment when her research showed that the dosage would be harmful to her baby.
During her fifth month of pregnancy, Rae went into premature labor, which was averted. However, doctors discovered that Rae's baby was probably dying. The child had a bowel obstruction, fluid in her stomach cavity, and Down Syndrome, a genetic condition causing mental retardation.
Rae almost wished her baby had been born dead. She investigated adoption but could not go through with it. Rae felt that God had a plan for this baby in her life. Born ten weeks early, the infant survived crises and operations.
When Rae became pregnant again, her husband feared that this pregnancy would hasten Rae's death and leave him with one or possibly two children with special needs. Rae forgives her husband for leaving her when she would not abort. With her Down Syndrome daughter doing well in school and her second daughter healthy, Rae is writing a journal for her children so that they will remember her should her cancer, now in remission, recur and claim her life.
You probably have questions that cannot be answered by test results or your doctor. National organizations specializing in your health problem can provide answers. Appendix H lists many organizations. Your area may have support groups or chapters of these organizations. Your doctor may know people who faced problems similar to the ones you are encountering. Ask for their names and phone numbers and speak to a few people who have faced your problem. Ask them for suggestions on how to cope and where to find help. The information you receive will encourage you, and you'll be amazed at how you can manage your life despite a health problem.
TRIUMPH FROM TRAGEDY
Your pregnancy may not be the normal, healthy, problem-free pregnancy that you had envisioned, but it can still be a new beginning for you and your baby. Be open to possibilities. You may grow stronger by dealing with this medical problem, and may learn some things that can help others in similar situations. You may educate your doctor or others by the way you handle your difficulty. Certainly you did not want this problem, and no one will ever be able to say that it was a good turn of events. But, with courage and faith, you may be able to turn some part of this tragedy into a small measure of triumph.
CONFRONTING FEARS ABOUT YOUR HEALTH
"Of all the passions, fear weakens judgement most."
--Cardinal de Retz, Memoirs
If you're afraid to have your baby because of health problems, get the latest information from your doctor and know your options. Medication, exercise, surgery, relaxation techniques, or vitamin treatments can manage even severe health problems, such as diabetes, most cancers, hepatitis, and multiple sclerosis. You may have to adjust to your disease, but you and your baby should do well.
CONCERNS ABOUT YOUR AGE
You're never too young to have a baby safely. If you can get pregnant, you can safely give birth. Eat nutritiously and your body will mature with the pregnancy and stay healthy. In some cultures, girls as young as twelve marry and have children.
Most modern doctors agree that you're never too old to have a baby safely, either. If you're in good physical condition, stay that way. If you're flabby, ask your doctor for tone-up exercises. Eat nutritiously. Modern health care workers and modern medicine can successfully manage pregnancy in older women.
Olga, Mae, and Vicky all became pregnant unexpectedly, gave birth successfully, and are delighted with their children.
A grandmother, forty-four-year-old Olga felt ill on a camping trip, only to later discover that she was pregnant with twins. A career woman married at thirty-five, Mae felt too old to parent but, at forty-five, discovered that her "menopause" was really pregnancy. At forty-eight, Vicky had long ago completed her family when she found that she was pregnant again. She never menstruated again after giving birth.
During your pregnancy, you may experience a problem such as severe nausea, toxemia, or anemia. These conditions are common to many pregnant women. Proper medical care can manage these and other problems. Be firm in your decision to give birth.
Yvette's patient (Chapter Three) and Abby (this chapter) both suffered extreme nausea while pregnant. Even worse was Barb, who underwent two years of artificial insemination with her husband's sperm before she became pregnant. Dehydrated and hospitalized several times because of nausea, Barb missed much work and had relatives care for her house when she had to stay in bed after she almost delivered at five-and-a-half months. Although suffering some problems when born almost a month early, her son is healthy and active today.
Some mothers are just plain miserable while pregnant. Angry and depressed, they want to be left alone to do nothing. Rose felt that way during all her pregnancies, especially her fourth pregnancy, an event that she didn't plan. She was so upset and ill that she couldn't even do housework. With three little boys, the youngest only a year old, she could hardly keep ahead of her work. She hated falling behind while she endured another horrid pregnancy.
If you are like Rose, ask your doctor if vitamins or exercise can help you feel better. Vitamin B injections helped Rose. Ask someone to help with the housework and find someone you can talk to about your problems. Get out of the house. Try to keep a sense of humor, as did Rose and her husband, who did Rose's housework for her. If you struggle along, you, like Rose, will soon have a baby to delight you.
FEAR OF PREGNANCY AND CHILDBIRTH
Horror stories about pregnancy and childbirth can make you afraid to give birth. Maybe you've had a dreadful pregnancy or birth experience and you're afraid now. Fear is a "disease" that increases your chances of nausea, tension, cramping, and unrest. Going into childbirth with fear almost guarantees that the birth will be agony. Fear will tense muscles, fight the birth process, and increase your pain.
Unlike humans, animals experiencing a normal birth rarely cry out. They don't spend their pregnancies worrying about birth, or worry about when they will experience their next contraction during labor. Animals rest between contractions or pace about. By accepting cramping rather than fighting it, birthing animals often experience little pain. Calmness decreases pain.
Even if you want to be "knocked out" during labor, learn to be calm during the entire birth process by attending natural childbirth classes or by reading about natural childbirth. By learning how childbirth works, you will recognize what's normal, and this knowledge will help control your fear. You'll also learn breathing techniques and exercises similar to the relaxation technique in Chapter Two. These help you relax during labor and make the birth process more comfortable. Practice the exercises every day for weeks so that you can do them automatically during labor.
Look for a capable doctor who knows the latest medical and technological advances and who is committed to giving you a good birth experience without overmonitoring and overmanaging your birth. This individual should be able to recognize and act on a problem, but should let you labor naturally otherwise. Ask how your doctor will handle any predictable problems. Then obtain a second opinion. Another doctor may see your case differently.
Your doctor, nurses, fellow mothers, books, and the questions in Appendix E will help you develop a plan for your labor. You needn't repeat any previous horrible birth experiences. Modern medications, drugs, and techniques assure a relatively painless childbirth.
How will you feel once your baby is born? Half of all women experience some "baby blues" either immediately after giving birth or a few weeks or months later. Usually the sadness, depression, and feelings of being overwhelmed go away in a week or two.
However, you may experience severe, longer-lasting depression. Find a doctor who will understand your emotional pain. You may need medical treatment or counseling. Build a support system of family, friends, or volunteers from a PREGNANCY AIDgency or women's center. Get advice from other women who have had postpartum depression. Some may even help you with your mothering, housekeeping, and other work.
Several family crises, including domestic violence, relocation, grieving, and illness, contributed to Mary Lou's three experiences with postpartum depression. After one birth, she even tried to commit suicide and take her children with her. Hospitalization, counseling, and learning to recognize and meet her own needs after birth have helped Mary Lou become a counselor to other women going through the "baby blues."
HAVING A BABY WITHOUT HAVING A NERVOUS BREAKDOWN
You may be facing stress, pressure, and crises. If so, your pregnancy will add another crisis, and make you feel as if you might have a nervous breakdown. But don't face your crises alone. A PREGNANCY AIDgency can help you and can refer you to additional help.
You should also try tension-reducing exercises, positive thinking skills, and modifying your diet to reduce stress. Use a journal to determine which problems must be met now and which can be dealt with later. Ask the advice of others who have faced similar problems. Try to envision your life a month from now; two months from now; a year from now; two years from now. Just what help do you need? Where can you get it?
Community agencies can help with housing, counseling, employment, financial management, and many other problems, including overcoming addictions. Volunteers from a religious group or PREGNANCY AIDgency can often provide babysitting, housekeeping, transportation, or care for an ill or elderly person who may be depending on you. Adoption agencies and mothers with children can share parenting advice. Let others help you to meet your needs. You'll feel better.
Frieda and Annie both needed encouragement.
Frieda's youngest child was nine and her oldest was pregnant with Frieda's first grandchild when Frieda became pregnant at forty-two. Usually calm-natured, she needed her pregnant daughter to console and encourage her and assure her that she shouldn't worry about neighborhood gossips discussing grandma's having a baby.
A former career woman, Annie felt incompetent, unfulfilled, and exhausted caring for her premature, high-need, fussy twins. With her twins a year-and-a-half old, she hated her current pregnancy, worried how she'd manage, and was so angry with God that she could no longer pray. A PREGNANCY AIDgency sent her to a mental health counselor and a member of the clergy. Annie felt somewhat better, although it wasn't until she went into labor that she felt the need to pray for a vaginal delivery, since she had had to undergo a C-section with twins. After successfully delivering her baby vaginally, Annie immediately fell in love with her newborn.
Both Frieda and Annie deeply love their children and regret the months they spent in worry and depression.
If you are receiving mental health counseling, you can almost always continue your pregnancy while under treatment, even if your mental health professional disagrees. If you receive help with your pregnancy, which includes making good plans for your baby, abortion is almost never necessary and many times can be psychologically harmful. This is the conclusion of several psychiatrists in Germaine Grisez's book Abortion: the Myths, the Realities, and the Arguments. In fact, one of the psychiatrists notes that completing pregnancy often helps in recovery from mental illness.
Whether or not you parent your baby depends on the severity of your illness, your progress toward healing, and your desire. You may need much help in deciding what to do. If parenting is unwise, you can make a good adoption plan. Have a PREGNANCY AIDgency volunteer visit your mental health professional. The three of you can work out a good plan to deal with your crises. Even though Ivy's psychiatrist and family urged her to abort, she sought pregnancy counseling and shelter, parented her son, and continued her job. Today she is a married career woman studying for an advanced college degree.
If you're facing medical difficulties, your doctor may have a psychologist confirm that you should end your pregnancy. You'll be told that any sane, rational woman would certainly abort. Nonsense! You can be emotionally secure and want to have your baby! With proper pregnancy management you will probably be able to continue your pregnancy. Surround yourself with positive-thinking people. Get other medical opinions, and contact a PREGNANCY AIDgency for help.
Marie had severe toxemia during her two pregnancies. Both babies were premature, and one had lasting physical problems. Despite her responsible use of birth control, Marie became pregnant before a scheduled sterilization procedure.
Both her doctor and a psychiatrist he consulted told Marie to abort. Her doctor reasoned that she'd probably miscarry anyway, or that her medication would cause her baby to be grossly deformed and retarded. If her baby survived, could Marie and her husband afford to parent a child with multiple disabilities? Marie might die. Who would care for her children? Suppose she had to go to the hospital months before delivery, as she had to do with her other two babies? Could she find a live-in sitter? Marie was still breastfeeding. How could her body support an unborn baby?
Marie felt that she would not be pregnant if God had not planned it. When her professional caregivers realized that Marie would not abort, they became supportive.
Marie contacted prayer groups, family members, breastfeeding mothers, and friends for prayers and support. She learned that she could continue to breastfeed as long as she ate well and rested. Her husband received a job promotion, higher wages, and better hours. The family purchased a parcel of land on which to build their own home. After three brief hospital stays during the summer, when Marie's mother, a teacher off for the summer, could babysit her two grandchildren, Marie gave birth by routine Cesarean section during her thirty-sixth week of pregnancy. At that time a sterilization procedure was also done.
Diagnosed as deaf, blind, and retarded, the infant began to improve at about nine months of age. By the time he was two years old, he was perfectly healthy. Doctors wonder if Marie's medication had "drugged" her son and kept him from responding until the medication very slowly worked out of his system. Despite some lingering kidney problems, Marie is doing well, and enjoying her children and her new home.
WHEN YOU HAVE A DISABILITY
Do you have what society calls a "disability"? If so, you know that you're more "differently abled" than "disabled." You've learned to manage your problems with medication, technology, or sheer determination. Many women with a variety of physical limitations have given birth. Many are parenting. Some have spouses who also have physical limitations, yet both manage to be excellent parents, often to perfectly normal children. The human spirit is far more creative than people generally believe. You can bear your baby if you have, as a pastor with a disability said, "the want to."
Your greatest problem may be convincing others that you can give birth and decide about parenting. Find a positive-thinking doctor. Contact a PREGNANCY AIDgency for help. If you are considering adoption, contact an adoption agency. If you want to parent, speak to your doctor or to counseling agencies that treat or raise money for people with disabilities. Ask these individuals for the names of other parents with disabilities. Talking to these parents will inspire you. Your support network will help convince negative thinkers that you can make good plans for your baby.
Stephanie bore and raised three children while suffering from severe, chronic arthritis. Ursa, a victim of multiple sclerosis, had her third child without her disease progressing more rapidly, despite what her doctors predicted. Jenny, who had artificial arms and legs, bore and raised a child conceived as a result of rape. Stephanie received support from her mother and sister; Ursa, from her husband; and Jenny, from a PREGNANCY AIDgency.
Health is a gift we can give ourselves, especially in pregnancy. Even though you may have health problems no matter what you do, you can ease some or all of the problems if you know how. Discuss your health concerns with a doctor, and possibly other professionals, such as mental health workers and nurses. With proper exercise, a good diet, prenatal vitamins, appropriate medications, counseling, and childbirth instruction, you should be able to give birth without permanent harm to either your physical or mental state.
CONFRONTING FEARS ABOUT YOUR BABY'S HEALTH
"We fear what we do not understand."
--M. P. N.
Every woman wants to have the perfect child, but do you know anyone who has a perfect child? Even the most beautiful child may be stubborn. An intelligent youngster may be shy. A super athlete may have a "swollen head." A generous, kind child may be forgetful or careless.
Every person has some kind of disability. No one succeeds at everything. You build your life around what you can do, not around what you can't. All children must learn to live with their disabilities, to accept themselves, and to build on their own unique strengths. All parents should love and appreciate their children for who they are. Your children can reach only their own potential, not someone else's.
You may be worried that your unborn child has a special need, that is, a physical or mental disability. Or you may wonder if your child has inherited or contracted a terminal illness, that is, an illness that will eventually cause your child's death. Don't take your doctor's word that your child has such a condition. Request prenatal testing. If your child has a a special need or a terminal illness, refer to Chapter Seven to learn about various parenting plans for children with these problems.
Children with special needs or terminal illnesses require special love. They are neither abnormal nor disabled but limited in activity or congnitive ability, or perhaps both. As one woman with cerebral palsy said, with a smile, "I'm normal for me." Even the child who can neither think nor move responds to love. That's why Dave and Neala have adopted three children with special needs.
WORRIES ABOUT INJURY TO YOUR BABY
If you experience an accident, fall, beating, or other injury, could your baby be harmed? Possibly, but probably not. Your baby is well cushioned in a fluid-filled sac in your womb, so the infant probably felt only a strong jolt. However, if you experience pain in your abdomen or bleeding or discharge from the vagina, or if your child is inactive, speak to your doctor immediately. If you are abused, consider leaving. Refer to Chapter Three.
Will a frightening or stressful experience harm your baby? Probably not, although some believe that prolonged and extreme stress may cause long-term physical and emotional problems. But, if you follow the suggestions in this book on managing stress, you should be able to minimize or eliminate its effects. On the other hand, short-term stress should have no effect on your baby's health. Refer to Chapter Two to learn how to release tension and stress.
DRUGS AND MEDICATIONS
Your doctor may be alarmed if you or your partner took any drugs or medications, legal or illegal, before or during pregnancy. Don't let the doctor scare you. Not every drug has an effect on an unborn baby. Those that do don't affect every unborn child exposed to them. The risk depends on the drug, when you took it, how great the dosage, and how often you used it. Your baby probably has a good chance of being healthy. Any problem may be minor, correctable, or reversible.
While taking extremely potent drugs to combat leukemia, Rosemary became pregnant unintentionally. Although her doctor's textbooks indicated that the drugs would almost certainly damage the baby, the child was normal.
Tell your doctor what prescription and over-the-counter medications, drugs, vitamins, salves, powders, and pills you use daily or occasionally. Most are safe. Some may not be. Read labels on drugs and medications to see if they are safe to be taken during pregnancy. If they are not, your doctor can prescribe safe alternatives.
If you take illegal drugs throughout your pregnancy, your baby may be born with a drug addiction and may experience withdrawal. Illegal drugs may cause prematurity, temporary or permanent damage, or death.
If you are using illegal drugs, tell your doctor. You need not worry about being handed over to the police. Instead, your doctor may give you a safer, legal drug, suggest ways for you to cut down your usage, or help you quit using the addictive substance. Drug abuse self-help groups and drug treatment centers can help. Ending usage now will protect your baby from damage or further damage. With medical help and counseling, Winnie gave up prostitution and a drug habit when she became pregnant. The drug's side effects on her son, who was adopted, were temporary.
If your partner is taking drugs, but you are not, then your baby is probably fine. Your doctor can answer your questions. However, seriously consider whether you want a drug addict to parent your child. Although Elaine's husband had a severe drug habit, her baby was not only healthy, but gifted in intelligence. Elaine filed for divorce, moved in with her parents, and continued her education and career while parenting.
If you were exposed to harmful chemicals, toxic waste, or X rays, your baby may have been damaged, but probably was not. Risk is small even if the exposure was great. Minimize any future risk by avoiding these dangers.
If you're exposed to chemicals or radiation at work, your doctor may suggest ways to minimize your exposure. Although the government may designate the level of exposure as safe, your doctor may feel otherwise. If so, show your employer your doctor's information. Ask a PREGNANCY AIDgency to act as advocate for you. Request a different job within the same company for the remainder of your pregnancy, or ask for additional protection from the harmful substances. You may want to request a leave of absence. Most employers will comply with a doctor's suggestions. They don't want a lawsuit should your baby be harmed.
If you have been exposed to X rays or radioisotopes in a medical setting, your child is probably normal. Any damage could be very slight. Edith, whose story appears earlier in this chapter, underwent radioisotope treatment when pregnant. Her child was normal. Unaware that she was pregnant, Patty had X rays to check a back injury. Despite her doctor's gloomy predictions, her baby was unharmed.
CONCERNS ABOUT USING VIDEO DISPLAY TERMINALS (VDT'S)
Some evidence indicates that working at a video display terminal (computer screen) for a long time and under certain conditions might increase your chance of having a miscarriage or a child with birth defects.
Some researchers feel that poor seating posture can impede blood flow to the placenta. Others wonder if low radiation levels or weak electromagnetic fields emitted by the monitor in particular may affect oxygen transfer to your baby or be harmful to your baby's development. The more time you spend at the VDT, the greater the problem. If others are using VDT's nearby, you are exposed to radiation and electromagnetism from their VDT's as well as from your own. Most researchers agree that the effect of radiation or electromagnetism decreases with your distance from VDT's. Dr. John Ott's preliminary work indicates that exposing yourself to natural light seems to cancel out some of the effects of electromagnetic fields. More research is being done.
For now, it is wiser to err on the side of safety. The following precautions may set your mind at ease. Discuss them with your employer and doctor.
* Ask to switch to another job that does not use VDT's. Or limit your time at the VDT to less than twenty hours a week--that's four hours a day, five days a week.
* Sit as far away from the monitor screen as possible, using a small table to hold the keyboard. Fit a combination glare and radiation shielding screen over the monitor. Or use equipment for the vision-impaired that enlarges the images on the monitor screen and allows you to sit even farther away.
* Work as far away from other monitors and as close to a natural light source as you can. For example, sit by a window with the drapes open.
* Have fluorescent lights in the work place replaced with full-spectrum, radiation-shielded fluorescent lighting.
* Try to switch to new computer models, put out by some firms, which have the highest radiation shielding.
* Researcher John Ott has observed that monitor-generated electromagnetic fields seem to magnetize the hemoglobin of red blood cells, causing them to clump together abnormally. This probably affects the transfer of oxygen in your body, including the supply to your baby. To minimize this effect, ask your doctor for a prenatal vitamin that has the lowest amount of iron beneficial for pregnancy, and follow the other suggestions listed here.
* Maintain good posture while sitting at the VDT.
After using the VDT for forty-five minutes to an hour, get up, stretch, and walk around.
* Daily, spend time outdoors in natural light. You might take your lunch break outdoors.
* Watch the media to keep abreast of the latest developments concerning VDT use during pregnancy.
Your exposure to most diseases will not harm your baby. Check with your doctor to be sure that any medications you're taking are safe.
Exposure to rubella (German measles) early in pregnancy may cause birth defects, some major. However, 50 percent of babies exposed to rubella are perfectly normal. Bernice (Chapter Three) and Virginia and Isabel (this chapter) were exposed to rubella early in pregnancy and had normal babies.
Lyme disease, which is carried by infected deer ticks, will harm you and your baby if untreated. If you have Lyme disease, antibiotic treatment will protect you both.
One disease that people can contract without realizing they have it is toxoplasmosis, a disease caused by a parasite whose infectious cysts can be found in the feces of infected cats and possibly in their fur. You can also get toxoplasmosis by eating undercooked fish or meat. Don't feed your cat raw meat. Let someone else clean the cat's litter box. You may not even want to play with your cat, especially if it roams outdoors. Eat only well-cooked meat and fish. Toxoplasmosis affects only 1 in 8,000 babies yearly, and doctors can successfully treat it in most babies before it has devastating effects.
AIDS is an incurable disease that eventually causes death. You can get AIDS from sharing drug needles with, receiving a blood transfusion from, or having intercourse with someone who has AIDS. An AIDS-infected mother can give her baby AIDS. If you do not have AIDS but your baby's father does, your baby will be safe. However, ask a doctor or a health clinic about ways to protect yourself from AIDS.
If you do have AIDS, your baby's bloodstream may contain AIDS antibodies. If these antibodies are present, your infant may or may not actually develop AIDS. Blood tests can determine if your baby has the antibodies, but cannot determine if your baby will develop AIDS. Children who do develop AIDS often die young. However, certain effective treatments are helping children live longer.
If you have AIDS, you may prefer to make an adoption or alternate parenting plan. A loving family or group home will parent your child while you may be too weak to do so.
You can parent your child if you have AIDS, although you should not breastfeed. AIDS may be passed from mothers with the virus to babies during breastfeeding. Speak to a health care professional about parenting precautions. By being careful, you can protect your child. Perhaps a doctor or hospital can refer you to an AIDS support group. Here you can talk with others who have AIDS, as well as those working with AIDS victims. You will receive support, advice, and help.
As you get too ill to parent, you may arrange for relatives or friends to care for your child. Or, you may consider adoption, foster care, or one of the group homes that exist for children and their mothers who have AIDS.
Caroline, Trini, and Betty all have AIDS, contracted from intravenous drug use.
Caroline released for adoption her drug-addicted baby, who had AIDS antibodies in her blood. Adopted by her foster mother, the baby tested negative for the AIDS virus at fourteen months of age.
Trini is now drugfree and parenting her two children, neither of whom have AIDS. Extremely careful, she scrubs her house with bleach and wears rubber gloves to prevent transmission of the virus. She belongs to an AIDS support group and knows that her family will care for her children when she can't.
Weakening from the disease, Betty is only in her twenties. Her boyfriend plans to parent his son, who does not have AIDS.
If you have a venereal disease, your baby is probably all right. You should, however, see your doctor at once. Untreated venereal disease can be damaging. One in four Americans will contract a sexually transmitted disease (STD). If you are sexually active, have your doctor test you for a venereal disease. Call your doctor's attention to any unusual pains or lumps in the abdomen, vaginal discharges, pain upon urination, nausea, fever, or aches. Let your doctor examine any growths, sores, or ulcers in the genital area or elsewhere on your body. Any one of these may indicate a sexually transmitted disease.
Many STDs can be treated successfully without harm to your baby. If you are already under treatment, ask your doctor if your medications are safe to use during pregnancy. You may have to take certain precautions, either before or after birth, depending on the disease. If the disease could have harmed your child, refer to Chapter Seven. However, early treatment generally prevents harm to a baby.
The U.S. Surgeon General warns: "Smoking By Pregnant Women May Result in Fetal Injury, Premature Birth, And Low Birth Weight." The more you smoke, the greater the risk. Breast-fed babies of smoking mothers have a greater chance of being colicky, crying babies. Children who live with parents who smoke have more respiratory illnesses than children of nonsmokers.
One survey found that women who smoked during pregnancy were twice as likely as nonsmokers to lose infants after birth to sudden infant death syndrome.
Smoking decreases vitamin C and vitamin B-12 in your blood. If you continue to smoke, ask your doctor about taking supplements of these vitamins. If you smoke to calm yourself down, stay away from chocolate, soft drinks, tea, and coffee. The caffeine in these products may make you nervous and cause you to smoke more.
Pregnancy is the perfect time to stop smoking or to cut back. The earlier you do it, the better for your baby. Your doctor or hospital may be able to refer you to stop-smoking programs. If you are considering a program that involves the taking of antismoking pills or medications, ask your doctor if they are safe for the baby. We all know women who smoked heavily during pregnancy and had healthy babies. However, it's always safer to stop, as Isabel did during her two pregnancies. Both her children were gifted. Unfortunately, Isabel lived with an unpredictable, financially insecure alcoholic husband. After each pregnancy, she began smoking again to "calm herself down," and she died of lung cancer in her mid-forties.
Alcoholic beverages are high in calories, and drinking them puts on unnecessary weight. Even worse, alcohol is bad for your baby. The United States Government and several health-related organizations ask all pregnant women to abstain from alcohol. Out of every 100 women who drink heavily throughout their pregnancies, 2 babies will suffer from fetal alcohol syndrome, which causes poor motor development and mental retardation. Out of 100 women who drink any amount of alcohol at all, 3 babies will have problems ranging from low birth weight to spontaneous abortion (death) of the baby.
Even though 95 women out of 100 who drink alcohol at all will have healthy children, pregnancy is still an excellent time to stop drinking. If you can't stop, at least cut back or water down your drinks. Speak to your doctor, hospital, or alcohol abusers support group for suggestions on "drying out." Why put your baby at risk?
Unmarried, alcoholic Vanessa used a PREGNANCY AIDgency to refer her to medical care and shelter as she drank her way through two pregnancies. Years after making adoption plans for her two perfectly healthy children, Vanessa joined Alcoholics Anonymous and sobered up. Still sober, she now supervises a large apartment building and visits one of her children, whom her parents adopted.
If you've been dieting, could diet pills, medications, or rapid weight loss have harmed your baby? Speak to your doctor. Your baby is probably fine.
Eating disorders will also affect your health and the health of your baby. Anorexia (eating so little that you become dangerously thin) and bulimia (gorging and then purging with laxatives and vomiting) are addictions that require professional help to overcome. You can combat these problems while pregnant, but you will need professional help. Your doctor can refer you to a good counselor or professional treatment program.
Overweight women usually give birth to perfectly normal babies, but their pregnancies may need some special management. Your doctor can advise you.
If you have weight concerns, ask your doctor for a nutritious diet and an exercise plan. The weight you gain will come off easily after birth. A diet center or supervised diet program can also provide you with diet plans for pregnancy. Exercise programs for pregnant women at the local gym or prenatal clinic can also help prevent weight gain.
BIRTH CONTROL METHODS
When birth control fails and a woman gets pregnant, she often gets just plain mad. Pregnancy was not supposed to happen.
Ask your doctor about the failure rate of your method of birth control. Were you using the method correctly? Should you switch methods? What chances do you have of getting pregnant, unexpectedly, again? Most birth control methods, used correctly and consistently, work well. This accidental pregnancy is probably a once-in-a-lifetime event. You will be making once-in-a-lifetime decisions.
Did the birth control method, device, or medication that you were using when you became pregnant harm your baby? Probably not. If you have fears about your baby's health, speak to your doctor. The questions in Appendix E may help. Ask to see professional literature and statistics. You may consider prenatal testing. Refer to Chapter Seven on parenting plans for a child with special needs or a terminal illness.
If you conceived with an IUD (intrauterine device) in place, tell your doctor. The doctor will make sure that your baby is not growing outside the uterus--a dangerous situation. The doctor will probably be able to remove the IUD without harming the baby. If not, you can continue the pregnancy with the IUD in place, although you will have an increased chance of miscarriage. The presence of an IUD should not cause deformities in your baby.
With two sons in school, Iris was planning to get a graduate degree and return to teaching to help pay off their two-bedroom house and several bills. Despite using an IUD, she noticed with dismay the familiar signs of pregnancy. When her doctor wanted to do a D & C, a procedure to empty her womb, Iris insisted on a pregnancy test first. Doctors were unable to remove the IUD without disturbing the pregnancy, so Iris had to rest to control spotty bleeding. She worried about her baby's having a disability and about her family's small house and tight budget. Her son is a healthy child who delights his family.
Using a condom or diaphragm will not harm your baby. With these birth control methods, you may also use a spermicide cream, jelly, or suppository. There are some who say that spermicides may cause birth defects, but studies are not in agreement about this. If spermicides caused a vast, obvious increase in birth defects, many studies should have shown it. The chance of spermicides' harming your baby is probably small.
If you conceived while using oral contraceptives, prenatal testing can determine what damage, if any, has actually occurred. Stop taking birth control pills and see your doctor if you think you are pregnant. Most babies conceived while their mothers were taking the pill are perfectly normal.
Perhaps you conceived while using natural family planning, as Faith did (Chapter Three), or after a vasectomy, as happened to Vera (Chapter Three). These should not have harmed your baby.
(Note: The Catholic Church disallows artificial birth control methods for its members. Please check with your diocese on Natural Family Planning options. In addition, some birth control methods do not prevent fertilization of the egg but rather cause a very early abortion of the developing baby. You may wish to discuss with your physician which methods prevent conception and which work after conception and therefore cause early abortions.)
Being very young doesn't put you at any extra risk of having a child with special needs or medical difficulties as long as you eat well and take care of your health. Your baby should be fine. Fourteen-year-old Lucy ate well throughout her pregnancy, ignored her boyfriend's pressure to abort, and had a healthy, normal son whom she is raising in her parents' home.
The older you get, the slightly greater chance you have of bearing a child with Down Syndrome. If you are forty, you have a 2 percent chance of bearing a child with Down Syndrome. If you are forty-five, you have a 3 percent chance; if forty-nine, a 9 percent chance. This means that of every 100 women who get pregnant at age forty-nine, 91 will have babies without Down Syndrome.
Children born with Down Syndrome are mildly or moderately mentally retarded, and have characteristic facial features. Some have additional health problems, but Down children born today have a life expectancy of fifty-five years. With infant stimulation and proper education, Down Syndrome children can learn to read and write and can become self-supporting, happy citizens. A letter written by an adult with Down Syndrome appears in Appendix B.
A child with Down Syndrome has an excellent chance of a good and satisfying life. If you cannot raise your child, many couples are waiting to adopt Down Syndrome children.
If you're an older mother, your chances of having a child with a genetic condition other than Down Syndrome is probably no greater than a younger woman's chances. Mae, Olga, and Vicky (earlier in this chapter) are older mothers who had perfectly normal children.
If your blood type is Rh negative, your baby may be in danger of blood disease, brain damage, and possibly death if left untreated. Tell your doctor about any previous pregnancies, whether they ended in birth, miscarriage, or abortion, and about any blood transfusions. Doctors can successfully treat your baby. A doctor can also give you a vaccine to prevent Rh disease from affecting future children.
INHERITED OR CONGENITAL CONDITIONS
A child may have any number of special needs or health problems. These may be inherited from the parents, or may occur during development in the womb. These conditions can range from mild to severe, and can involve mental or physical growth or both. Be sure that your child's prognosis is as up-to-date as possible.
Misinformation abounds on various diseases. For example, there are those who think that children with hemophilia often bleed to death from minor wounds. The truth is, internal injuries pose a greater risk.
Information can be outdated as well. For years, geneticists believed that any male child conceived with a fragile X chromosome was mentally retarded (females with fragile X are normal or have very minor learning problems). Latest findings show that 10 percent of male children with fragile X are normal. No one knows why.
Doctors may be unaware of the most current treatments. For example, many doctors don't know about the latest, life-prolonging treatments for the serious blood disorders thalassemia and sickle cell anemia. Other doctors still think that spina bifida children are hopelessly incurable, but modern treatments can help most spina bifida infants to mature into independent adults who can hold down jobs.
Ask professionals for the most current literature. Refer to other parts of this chapter for additional information. Call national agencies, which have the latest information on your child's problems. Some agencies are listed in Appendix H. Be sure that the prognosis you hear considers current medical treatments.
Doctors told Gala and Odessa that their spina bifida babies were severely damaged and dying, and recommended nontreatment. Instead, Odessa contacted a modern children's hospital which treated the baby. Today Odessa's child walks and has normal intelligence. Gala insisted on treatment for her son at birth and received help through a charity for special needs children. Her son, though mentally retarded, can talk clearly and direct his wheelchair.
The information you receive regarding the physical and mental consequences of the condition affecting your child should be complete as well as accurate. For example, Turner's syndrome has no effect on a girl's intelligence but will keep her body from physically maturing unless she receives hormonal treatments.
Surgery can help many conditions. Congenital heart defects, for example, can often be treated through surgery or with drugs, either before or after birth.
A rapidly expanding home health care industry makes many conditions treatable in the home. For example, children with cystic fibrosis can use portable, pocket-sized pumps to administer antibiotics continuously to fight dangerous lung infections. Insurance usually pays for home health care and equipment.
A victim of Carpenters Syndrome, Cecilia's newborn had severe bone deformities. Doctors said that he was mentally retarded, probably severely so, and would likely die. However, when the baby did well with an oxygen unit, doctors reconstructed his skull, allowing room for brain growth. Other operations followed. Today the boy is speech-delayed, not mentally retarded, breathes on his own, and has a near-normal appearance. Cecilia and her husband were grateful for the prayers, of family, friends, and church members, and for their financial support and generous gifts.
If you or your partner has a problematic condition that your baby could inherit, people may discourage you from having a child. Should you get pregnant, doctors may urge you to submit to genetic testing. If your child has special needs or certain health problems, you may be pressured to abort. Yet who can better teach your child how to live with the condition than you? If you choose to make an adoption plan for your baby, who can write your child a letter of encouragement better than you?
Charlotte had struggled to find acceptance despite a very visible physical disability. When prenatal tests showed that her daughter had the same physical deformity, Charlotte refused her doctor's suggestions of abortion. She and her husband plan to teach their daughter that what people do with their lives is more important than appearance.
Any condition in the parents that occurred because of accident, environmental influence, or disease is not hereditary.
Most emotional disorders are not inherited. Even with those that could be, only a small percentage of children will develop the illness. Even if both parents have schizophrenia, their child still has no more than a 50 percent chance of developing the disease. Schizophrenia and other mental disorders can usually be treated successfully with medication, counseling, and sometimes hospitalization for periods of time.
Certain physical conditions and tendencies toward chronic illness and IQ levels may be inherited, but not as often as commonly thought. As discussed in Appendix C, many mentally retarded women can conceive normal babies and can give birth. With early childhood stimulation and education, children can increase their IQ. Proper diet and other treatments may help control certain chronic conditions. A child who inherits a disability or a health problem may have a milder form than either parent has. Your child will have an excellent chance for treatment, as doctors can diagnose the condition early and begin treatment immediately.
Doctors at many large university center hospitals are now performing some types of fetal surgery to correct life-threatening conditions in the unborn child. Despite the risks involved, fetal surgery has saved unborn babies. Four-and-a-half months after conception, unborn baby Amy Spencer was operated on to drain a life-threatening cyst. When she was born seventeen weeks later, the drain was removed. A twenty-three-week-old unborn child, Baby Mitchell was successfully operated on for a blocked urinary tract, then returned to his mother's womb to finish development until birth.
Your baby may need an organ transplant. However, you may have to be aggressive in order to have your child receive this costly operation. Going public with your needs elicits sympathy and help, and may make the transplant possible.
When their newborn needed a liver transplant, Wallis and her husband mounted an effective, tiring media campaign in which even professional sports players and actors brought public attention to their plight. With strangers sending in funds and the family's insurance company amending its policy to include liver transplants, the parents were able to get their baby a liver. A year and a half later, he is an active, healthy two-year-old.
CHARTING A COURSE OF ACTION
Concern about your baby's health is natural. Learn which fears are groundless and which are a real cause for concern.
If you have fears, talk to your doctor about them. Determine what chance you actually have of bearing a child with special needs. Consider prenatal testing if you are especially concerned. If your child has special needs or health problems, review all your parenting options, as discussed in Chapters Five and Seven. Knowledge about risks, prognoses, parenting options, and up-to-date treatments can help you make decisions without fear.
"Today wombs have windows."
--M. P. N.
Sometimes doctors suggest ending a pregnancy because a problem may exist. Has your doctor told you that your baby will "probably" or "definitely" be "retarded" or "deformed"? How does your doctor know?
Years ago no one knew if a baby had special needs or health problems until birth or even months or years later. Today, prenatal tests check your baby before birth. If something might be wrong with your baby, your doctor should test to be sure. Would a doctor operate for lung cancer just because it seemed as if you had it? A good doctor would find out for sure, then operate.
When Virginia was one month pregnant, her two-year-old caught rubella (German measles). When Virginia, a nurse, asked for a gamma globulin injection to protect her baby, her obstetrician said, "Your baby's been exposed and is going to be deaf, blind, retarded, or dead anyway. The gamma globulin won't do any good."
So Virginia called another doctor who gave her the injection and took a blood test which indicated that the virus could have affected the baby. Virginia's original doctor said, "You don't have to have the baby. I could recommend someone to you."
Virginia credits her faith in God for sustaining her through nine months of worry before she gave birth to a perfectly healthy baby.
You'll probably be asked to take at least one prenatal test. You need to know if you want it.
Prenatal testing can be expensive. Ask your doctor about the cost. Will your insurance cover it? If not, can you afford the test? Can less expensive tests be done? If your insurance does cover the cost of prenatal tests, your doctor may schedule many of them. Do you want to submit to all of these? Are they necessary?
Prenatal testing cannot detect every possible problem or guarantee the "perfect" child. No prenatal test is 100 percent accurate. Some tests carry a greater probability of error than others. Some rely on a doctor to interpret the results. A borderline result may indicate a problem to one doctor and no problem to another doctor. Sometimes testing indicates a problem when none is present. If tests indicate a problem, ask for a retest or additional tests, as did Nora, whose story appears earlier in this chapter.
Estelle and Abby had more than one prenatal test.
When Estelle's alphafetoprotein (AFP) test results were abnormally low, her family and friends urged her to abort her baby, who her doctor thought would be malformed and probably grossly retarded. However, amniocentesis showed that the baby was normal but two weeks younger than the doctor had thought.
During her seventh pregnancy, Abby gained excessive weight too quickly and became so weak and nauseated that she had to be hospitalized twice. Ultrasound revealed twins, one of which was dead and being reabsorbed. Because the other twin could die, and because Abby had a benign uterine tumor that caused her to miscarry previously, her doctor monitored the pregnancy with several tests. Some professionals felt that the tests indicated spina bifida, external body intestines, and mental retardation in the surviving twin. Abby's doctor said that the baby was fine. Abby's premature labor was averted, and she gave birth to a healthy daughter.
Have your child tested after birth to confirm the results of prenatal tests. Testing after birth almost always yields accurate results, although in rare cases this testing, too, may be wrong. Doctors told Marie, whose story appears in this chapter, that her baby had permanent problems. Today he is perfectly healthy.
THE LIMITS OF PRENATAL TESTING
The following is a list of what prenatal testing cannot do.
* Prenatal testing cannot discover emotional or behavioral problems. A clinically "normal" child may have emotional or behavioral problems, while a child with a disability or illness might be emotionally stable.
* Prenatal testing often cannot indicate the severity of a problem. It may be possible to determine the severity only after birth.
* Prenatal testing cannot predict exact IQ levels. Many mentally retarded children exceed expectations.
* Prenatal testing cannot always accurately predict how long a dying baby will live. You can get an idea but really can't be sure.
* Some prenatal tests indicate that a child could have a problem, not that a child does have a problem. For example, Duchenne muscular dystrophy is a progressive, fatal disease that affects boys only. When a pregnant woman carries the gene for this disease, prenatal tests can determine if her baby is a boy, but only tests after birth can determine if he has the illness.
* Prenatal testing cannot tell you what to do about a problem. Knowing about a problem can help you explore parenting and treatment options, but you could do this after birth if you didn't have the testing.
* Prenatal testing cannot predict how your child will handle problems. It cannot predict if someone, soon, will find a new treatment or cure for your child's condition. Prenatal testing can't measure the parenting environment or tell which people, perhaps
including yourself, can love and help your child.
TREATABLE OR NOT?
If your doctor wants to schedule a test, ask why, then decide if the reason given warrants the test.
Testing may reveal a problem that can be treated before birth. However, most children with special needs or health problems can be treated only after birth, and some problems have no cures or treatments.
Some mothers, like Darlene (Chapter Seven), feel that certain doctors treat an unborn child known to have special needs or certain health problems less aggressively than a "normal" baby who is in danger. Since Darlene feels that unfavorable test results prejudiced her doctor against aggressively treating her unborn baby, she refused prenatal testing in a subsequent pregnancy. If your doctor is testing for an untreatable problem, do you want the test?
If birth problems such as prematurity, postmaturity, or Cesarean section threaten, a doctor may use prenatal tests to determine if a baby could be safely born or if special equipment must be used. This can protect your baby's life.
Some doctors schedule tests to confirm stages of pregnancy and to look for dangerous conditions, as Abby's doctor (earlier in this chapter) did. This can help them better manage your pregnancy.
Prenatal testing carries some minor risks to both mother and baby. Is your desire to know the health of your baby worth the small risk involved with testing?
Laura, Rita, and Trudy all faced prenatal testing.
Laura had an increased risk of having a mentally retarded child since she was forty years old and both she and her husband had mentally retarded relatives. However, she planned to parent her child no matter what, so she refused prenatal testing. Her child is classified as a genius.
Since Rita (Chapter Seven) had a daughter who was born with a fatal genetic condition, she had prenatal testing during the following pregnancy to prepare for the child's birth in case of another problem. However, this baby was normal.
After having three miscarriages, Trudy was half afraid to try again for another child. Although doctors monitored her pregnancy with ultrasound, she refused all other prenatal tests, since she wanted to have her baby and in no way endanger the pregnancy. She gave birth to a healthy girl.
SELECTING A PRENATAL TEST
What tests are you contemplating? Ask your doctor to explain each test and the stage of pregnancy at which it is done. Inquire about the test's risks and benefits, its accuracy and percentage of error, and what it can and cannot reveal. Ask if treatments are available for any problems found. Don't accept general reassurances--get percentages and specific information. Evaluate, then decide what to do.
Ask to speak to other women who have had the test. They will tell you what it really was like! Doctors tell patients that amniocentesis doesn't hurt, but it hurt Darlene, whose story appears later. She also had contractions for three days following the test. Doctors say this is a "normal side effect," but it causes a spontaneous abortion of 1 out of every 100 babies. A good doctor will tell you that, too.
Types of Tests
Ultrasound bounces high-frequency sound waves off your baby and reflects your child's image onto a screen. Ultrasound is almost routinely done today and often is an aid to the safe delivery of a baby. While checking on a baby's health, ultrasound also can determine a child's gestational age and position in the uterus and can confirm the presence of twins.
Some scientists wonder if ultrasound waves may cause some undetected damage to the developing child's body cells. However, no evidence of damage has yet been found. Ultrasound is only as good as the person reading the screen and interpreting the results. Some untrained doctors have misread a baby's sex or incorrectly interpreted a problem.
Amniocentesis ("amnio" for short) is done around the sixteenth week of pregnancy. Fetal cells, withdrawn from the womb through a needle, are analyzed for genetic defects. The needle occasionally strikes the baby. This may be partly responsible for the increased risk of pregnancy loss associated with amniocentesis. Amniocentesis also seems to increase the chances of a premature birth and is associated with an increased susceptibility to inner ear infections in childhood.
In fetoscopy, done in mid-pregnancy, an endoscope (large, needle-sized metal tube) illuminates the uterus while a technician takes a sample of your baby's blood or skin for analysis. Fetoscopy seems to increase the rate of spontaneous abortion and premature labor.
Done early in pregnancy, chorionic villi sampling uses a catheter inserted into the uterus to obtain a baby's tissue sample for analysis. This tricky procedure increases the chance of miscarriage.
Around the sixteenth to eighteenth week of pregnancy, alphafetoprotein (AFP) testing analyzes a mother's blood sample to determine how much AFP, a substance produced by the baby's liver, is present. High or low levels may indicate a genetic problem. Or they may mean that the baby is younger or older than the doctor thought, or that Mom has a problem. If you have unfavorable AFP test results as Estelle (earlier in this chapter) did, get another test to determine if the baby really has a problem. AFP testing is often false-positive on the first try.
In most cases, doctors suggest amniocentesis, fetoscopy, chorionic villi sampling, and AFP tests to determine if an unborn baby is healthy or genetically normal. In many places, these tests are becoming routine. If a baby has special needs or severe health problems, the mother can choose to abort. Many doctors prefer earlier prenatal testing because they feel that aborting earlier in pregnancy is safer physically and less traumatic emotionally for the mother.
Most doctors ask pregnant women to have at least one prenatal test. Since some women have sued doctors for not telling them about prenatal testing, your doctor may pressure you to have a test. However, if a test is not required by law, you can refuse it. You may want to refuse prenatal testing if you would not consider abortion, if you don't like the test's risks, or if your doctor is not testing for a problem that could be treated before birth. If your doctor is really pushy, switch doctors, or file a letter with your doctor stating that you refused prenatal testing against doctor's recommendations.
FACING THE BIRTH OF A CHILD WITH SPECIAL NEEDS OR HEALTH PROBLEMS
Prenatal testing may reveal that your child has special needs, a terminal illness, or abnormalities incompatible with life. Many people, including family members, friends, doctors, nurses, and genetic counselors, believe that women should choose abortion for such children. They may believe that you have a right to a normal child or that you cannot mentally, physically, or financially handle an infant who has certain conditions. Perhaps they feel that people with special needs or terminal illnesses live unhappy lives of lesser quality and are "better off dead." Others feel that caring for people with severe problems requires an unwise use of money and resources.
You may experience tremendous pressure to abort a "less-than-perfect" child. The pressure will probably be greater if the child is dying.
Suddenly everyone's love and concern for your baby becomes rejection. They assume that your love will diminish when you learn that your child has problems. If your child is left with a disability following an accident or is found to be terminally ill after birth, no one expects a parent's love to evaporate. Why should it evaporate for your unborn baby?
Maybe you want to give your baby a chance. A medical team that pressures you to abort will add tremendous stress to your situation. Your very first parenting challenge may be to convince your medical team to let you give birth, or to switch to more supportive doctors. Refer to Chapter Seven for more information on caring for children with health problems or special needs.
DEALING WITH YOUR FEELINGS WHEN YOUR UNBORN BABY HAS A PROBLEM
If you know your baby has special needs or severe health problems, you'll feel strange and helpless as you carry your child within you. You can't run from, heal, see, or touch your baby. Prove your love by talking to your infant now and making plans for the future. Together, you and someone very close to you can tell close relatives and friends about your baby.
But what do you tell casual acquaintances and strangers? Give them information they can handle. Answer their questions briefly and don't embarrass them by mentioning your baby's problem. After answering the question, change the subject.
"I didn't know you were pregnant!"
"I sure am!"
"When's the baby due?"
Give your due date.
"I bet you're glad."
"Yes, I am."
"Do you know if it's a boy or a girl?"
"Don't you like to be surprised? I do." (If you don't mention your baby's sex, you don't have to mention testing results.)
"Did you have prenatal testing?"
"How was it?"
"My baby has a problem but deserves a chance to reach his or her potential. Thanks for your concern."
DO YOU REALLY WANT PRENATAL TESTING?
Now that you know what prenatal testing can and cannot do, you need to answer the question, "Do I want prenatal testing? Why? Why not?"
Only you know what is best for you and your baby. Some women are relieved to know that their children are normal. Others want to make special plans for their children if their children have special needs or health problems. If the baby's problems can't be treated before birth, many women don't want to know about them until the birth. How do you feel? Talk over with your confidant your decision to have or to refuse prenatal testing. Choose the option that will help you to rest easier.