FACING YOUR OWN DEATH
"Death is the peak of a life-wave, and so is birth.
Death and birth are one."
--Abba Hillel Silver
You may be facing terminal illness and be pregnant. It may be that your illness was discovered after your pregnancy began, or that you were ill and then became pregnant. Possibly your doctor has told you that there is a small chance that you could die during delivery. If you are facing death, either because of this pregnancy or otherwise, your emotions may be far worse than any you've experienced before. You are likely to experience the stages of loss that were first defined by Elisabeth Kubler-Ross in her now classic book On Death and Dying.
An immediate reaction may be either calm outward acceptance or total hysteria. This coping mechanism gives way to shock and denial, then fear and dread, worry and anxiety. Soon you'll feel angry, bitter, helpless, or out of control. You'll begin to bargain with God and your medical team. Eventually you'll come to accept your diagnosis. As you begin to heal emotionally, you'll be able to make decisions.
If your illness is really terminal, ending your pregnancy won't save your life, although it may prolong it. Ask your doctor to be honest. Request statistics and probabilities on your life expectancy if you continue the pregnancy and if you end it. Find out if an early delivery of your baby might give you both a better chance of survival. If you don't believe your doctor, get several other opinions. Weigh the information and decide what to do. You may want to have your baby, no matter what the diagnosis.
If you really are facing death, you'll need counseling to help you deal with your conflicting thoughts and emotions. Some doctors and clergy make good counselors for the dying; many do not. If possible, contact a hospice.
Not to be confused with a hospital, a hospice cares for and counsels terminally ill individuals and their families. A hospice usually accepts only those patients who have a short time to live and for whom further treatment would be useless. With hospice care, you will probably continue to live at home, except for when you give birth or experience any pregnancy problems that require hospitalization. You'll receive pain medication and be kept comfortable, but your illness won't be treated aggressively unless doing so would give your baby a better chance of survival. Hospice workers will help you and your family accept death, and you will probably die at home.
Well-meaning relatives, friends, and professionals may be pressuring you to end your pregnancy to prolong your life. Perhaps they are worried that medications and treatments may have harmed your baby. On the other hand, you may want to give birth because you feel your baby deserves a chance.
Discuss pressures and concerns with a confidant or a PREGNANCY AIDgency volunteer. Request treatments or medications that are safer for your baby. Tell your doctors, your family, and your friends that you are going to have your baby and that you are hoping for their love and support.
As much as you are able, make choices about your child's future. Will your partner, friends, or relatives parent your child? Will the person who is parenting need the help of a baby sitter, nanny, or household helper? Are you well enough to interview applicants and hire one? Would you prefer an adoptive family? Write down or tape-record any definite ideas about how you would like your child to be raised. Ask the parenting person to assure that your wishes will be met. Arranging details will make you feel more secure about your baby's future.
During the sixth month of Lily's fifth pregnancy, doctors discovered ovarian cancer. Lily refused further surgery until doctors could perform a Cesarean section and deliver a living baby. By the time of the C-section, the cancer had spread drastically. Having spoken to her husband about parenting arrangements, Lily died two weeks after giving birth. Community members, church friends, and relatives gave much assistance to Lily's family. The older children babysat the younger. Another mother watched the baby while Lily's husband was at work. The family managed the best they could.
Perhaps you'd like to write a letter or booklet or tape-record a conversation for your child, like Rae did (Chapter Four). If you need help with this, ask a confidant or hospice volunteer.
Make a list of the ways people can help you, and have it printed at a local copy shop. Hand out this list to those who care. Wendy Bergren included these items on her list: cook a dinner, pray, tell me jokes, bake and freeze homemade pastries, and babysit. (See Appendix I for how to obtain a copy of Wendy's list.) By making a list, you'll receive the help you need.
Do you have any unfinished business? Do you need to write a will? Should you mend a relationship with someone? With God? Work on addressing these responsibilities now.
View your life realistically. Make a list of your successes and achievements--the bright spots. Speak about your fears and angers to God and to those who can offer comfort and direction. Rejoice in your baby's life. Strive for a peace that will remain until death.
Suppose You Die First?
Suppose you die before the baby is born? Modern technology may be able to keep your body alive until your baby's birth. If you want your baby to live, put your desire into writing now and file it with a lawyer.
When pregnant Helen suffered total brain death during an operation to remove a brain tumor, her live-in lover Yates remembered her last words, "You take care of the baby." Despite objections from Helen's mother, he fought a legal battle to keep Helen's body alive for almost two months until her baby was mature enough to be born and live. Yates's married sister is raising the baby while Yates remains the proud and loving father. The child is also in touch with Helen's parents.
UTERINE AND CERVICAL CANCER
Pregnancy may cause your death if you have an advanced, untreated case of uterine or cervical cancer. Carrying your baby to term may give the cancer enough time to spread to other internal organs and endanger your life. However, if the cancer is not advanced and is under treatment, it may be possible for you to give birth without severely threatening your life. For example, some doctors will treat the cancer, deliver your baby early by Cesarean section, and then administer more aggressive treatments. If you have these cancers, consult several doctors so that you can obtain and consider different treatment options before making any decisions. You may be willing to risk death in order to give your baby a chance.
Vera and Zita had uterine cancer and wanted their unborn babies to live. Under her doctor's close supervision, Vera (Chapter Three) continued her pregnancy and gave birth early by Cesarean section before undergoing surgery for the cancer. Both she and her teenaged son are healthy today. Zita, a doctor, knew that her very malignant uterine cancer would kill her if doctors did not remove her uterus. However, removing her uterus would kill her baby. A very prayerful woman, Zita chose to continue the pregnancy and died two weeks after the birth of her healthy fourth child.
An ectopic pregnancy is often life-threatening. In 95 percent of ectopic pregnancies, the baby is growing in a Fallopian tube. The Fallopian tube leads from the ovary, where the egg is released, to the uterus, where babies normally develop. At this time, doctors can't safely transplant the baby to the uterus. Doctors must remove the baby before the growing infant bursts the tube, causes internal bleeding, and dies. If a rupture occurs, the mother might die.
The remaining 5 percent of ectopic pregnancies occur in the ovary, cervix, or abdominal cavity. A baby growing in the abdominal cavity has a small chance of growing to nearly full term and being born alive.
If you have cramping, bleeding, or a pain or lump in your side during the first two months of pregnancy, ask your doctor to test for an ectopic pregnancy. Otherwise, you could be in serious danger.
Despite Lynn's severe cramps, excessive blood loss, two fainting spells, and a lump in her side, her doctor never diagnosed ectopic pregnancy. Instead, once Lynn's pregnancy test registered negative, the physician scheduled a routine operation to empty her womb. Overhearing Lynn's symptoms, another doctor examined Lynn and discovered a ruptured ectopic pregnancy that could have killed Lynn or destroyed her entire reproductive system. A quick operation saved Lynn, who went on to have other children (see Lynn's story in Chapter Two).
Other than ectopic pregnancy and some cases of advanced, untreated uterine or cervical cancers, modern medicine can manage most health conditions, including diabetes, heart disease, kidney disease, treated cancers, leukemia, multiple sclerosis, ostomies, and lupus, so that you can give birth without dying from the pregnancy. Chapter Four contains many stories of women with health problems who safely gave birth. In addition, repeat Cesarean section is much safer than it was thought to be. Irene has had eight Cesarean births and knows of a woman who has had thirteen.
If you're told that your pregnancy will cause your death, ask your doctors the questions in Appendix E. You may have additional questions. You'll want to know the exact reasons why your doctors predict death, the probability of your dying, and how your doctors can minimize or eliminate the risk. Request facts and literature on your condition. Read about what you are facing and think about your doctors' suggestions. Chapters Three and Four will give you additional guidelines. Dire consequences may be only a slight possibility. Good medical treatment might greatly increase your chances for a safe pregnancy.
You are the one who wants to have your baby. You make the final decisions. If you're insistent, your doctors are likely to go along with your wishes. If some doctors won't treat you, find others who will.
OVERCOMING SUICIDAL TENDENCIES
If your situation has led you to think about suicide, seek counseling at once! Don't assume that those around you "know" or "sense" what you are planning and would stop you if they cared. Most people don't "sense" that someone is planning suicide, nor do they take seriously any mention of suicide. People will either be angry with you for mentioning it, or they will ignore you. They may joke about suicide or even dare you to do it! These attitudes will upset you more. Get help!
Immediately call either a suicide prevention hotline, the local police, or a hospital, or call a national twenty-four hour, toll-free hotline (some numbers are listed in Appendix H). Counselors will help you deal with your immediate disturbing thoughts. They will not send someone to whisk you away to the nearest psychiatric hospital or police station. If you want to speak to someone in person, ask that someone be sent to you. If you want to go to a hospital, say so.
Also call a PREGNANCY AIDgency twenty-four-hour hotline (see Appendix H) to learn what pregnancy help is available. A local AIDgency may be able to locate a professional counselor to help you, perhaps with no fee.
Problems Have Solutions
Every problem does have a solution that you can handle. You have more strength, talent, and hope than you know. You can make good choices, learn to cope with life, find joy in living, and believe in yourself. You can find people who really care.
Make yourself six promises.
1. For your own sake, promise yourself that you won't act on your thoughts of suicide for at least a year.
2. Determine to call both a PREGNANCY AIDgency and a suicide hotline for help today, now.
3. Promise that you will be open and honest with those who are trying to help you and that you will follow their instructions not once, but for a whole year.
4. Then determine that every time suicide enters your mind you will call a hotline immediately.
5. Throw out any object that makes you think of suicide. Drop friends and activities that depress you. Make new friends and find new activities.
6. Finally, if your home situation is making you suicidal, call a government office that deals with family problems, a women's shelter, a PREGNANCY AIDgency, a member of the clergy, or a hotline and tell the person who answers the phone about your situation.
You may be able to live in a foster home, a group home, or government housing, or with a friend or relative. You need a supportive, positive environment where you can learn to feel good about yourself and discover and use your abilities.
You can feel different about life in a year. Then give yourself another year of life. You will still have crises to face, emotional wounds to heal, and skills to learn. With counseling, the road ahead will be a lot smoother than the road you're on.
Sixteen-year-old Maggie made her third suicide attempt when her drug-addicted boyfriend got her pregnant. Placed in a mental institution for the third time, she, with her counselor's support, was planning an abortion when her father asked a member of the clergy and a PREGNANCY AIDgency volunteer to speak to her. Maggie resented their visit, but began to rethink her decision when the AIDgency volunteer sent her an encouraging note. Maggie called the PREGNANCY AIDgency, which sent her to a home for unwed mothers, and then to live with a foster family. Enduring her rebellion, the foster family, through their example, led Maggie back to the faith she had rejected for seven years.
Maggie made an adoption plan. Two years later she married, and is now the happy mother of three additional children. She feels that giving birth to her baby, despite her own self-hatred, was the turning point of her life.
LIVING WITH DYING
Facing your death at the beginning of your baby's life is a bittersweet time. Confusion and fear mingle with anticipation and hope.
Begin to plan for the future by getting sound medical advice from compassionate and informed doctors. Know exactly what your risks and chances are. Your decisions are only as wise as the information on which you base them. Seek help from a PREGNANCY AIDgency and reach out to friends and relatives. Soon you will know which of them will support you. If you have a relationship with God, seek spiritual help from a member of the clergy and in prayer.
You have a say in your baby's future. Make plans and never stop hoping. Life has a way of working out for those who hope and trust. Your days ahead may be brighter if you work to make them so.
MAKING PARENTING PLANS FOR THE SPECIAL NEEDS OR DYING CHILD
"Love is always ready to excuse, to trust,
to hope, and to endure whatever comes."
--1 Corinthians 13:7
Hearing that your baby has special needs or is dying overwhelms you with confusion and grief. The diagnosis must be incorrect! How can this be happening? In vain, you search for a doctor, technology, or medication to cure your baby. Feeling helpless and out of control, bitter and angry, you see your baby as a human "time bomb."
If you continue the pregnancy, you'll begin to see each day as one more day of nurture. As you make realistic plans, you'll respond lovingly to your child.
Learning that a home for special needs children would care for their Down Syndrome son if they couldn't, Bess and Gene decided to continue the pregnancy even as they mourned intensely for the intelligent son they'd never have.
At three months of age, the infant began an early educational stimulation program. Ten years later, the child speaks well, reads at the first grade level, and is in a special classroom in a regular school. He enjoys bowling, arts and crafts, swimming, and camping. Although Bess admits that she's had some trying moments, she laughingly says, "He's a neat kid, and we love him for who he is. Trade him? Never!"
Darlene, whose story follows, told her doctor, "My child has special needs and is special to me." A child with special needs or health problems requires a special love. Not every family can give this love. Your decisions will forever influence your child's life and yours. Both of you must reach your potential. You may choose to parent your child or you may choose foster care, adoption, or institutional care. By answering the questions in Appendix G, you can explore every parenting option so that you make the best plan.
OBTAINING TREATMENT FOR YOUR CHILD
You began to parent your child when you decided to give birth. Ask your doctor if vitamins, medication, or surgery can help your baby before birth. Request treatment for your child, and choose a doctor who will aggressively treat an unhealthy child regardless of whether the child has special needs. Darlene feels that her doctor did not properly treat her son.
Thirty-seven-year-old Darlene had three living children and six miscarriages. When prenatal tests confirmed that her unborn son had Down Syndrome, her doctor, Dr. Smith, wanted Darlene to abort, and sent her and her husband to a genetic counselor who told them what the worst possible outcome could be. Even the ultrasound technician, who said that the baby's heartbeat was strong, told Darlene, "You won't have an abortion no matter what I say, will you?" Darlene had to tell everyone that her baby "deserves a chance, like everyone else."
When Darlene was six months pregnant, she was in a car accident and began spotty bleeding that continued throughout the pregnancy. Dr. Smith told her that the placenta, not the baby, was probably injured. If the baby were injured, doctors could do nothing.
At Darlene's eight-and-a-half month checkup, the baby's heartbeat had dropped, but Dr. Smith said it was "within normal limits." About an hour after Darlene took a three-hour glucose tolerance test, the baby went into a frenzy of movement and then was still. Five days later, Darlene demanded an ultrasound which confirmed that the baby had died. Grief stricken, Darlene asked that the doctors induce labor, then do an autopsy, which found nothing unusual about the baby other than Down Syndrome.
Dr. Jones later told Darlene that Dr. Smith must have known that her baby was in trouble when the heartbeat dropped. Had the baby been normal, Dr. Smith likely would have done an emergency Cesarean section, but he had decided that saving a Down Syndrome child's life was not worth the risk of Cesarean section to overweight Darlene. If the couple had known that their baby was in trouble, they could have found another doctor or insisted that the Cesarean be done.
When Darlene became pregnant again, she sought a different doctor who would treat a special needs child more aggressively than Dr. Smith had. Asking a doctor the questions on medical difficulties in Appendices E and G can help you choose a doctor, too.
If a medical crisis arises or if your doctor seems to make light of a health problem (as Dr. Smith did), ask your doctor about treatment options. If your doctor says it would be hopeless to treat your child, be sure that the prognosis is accurate. Your doctor may be uninformed, may think that your child is "better off dead," or may want to spare you the emotional strain and financial burden of caring for your child.
Obtain a second and third opinion--quickly, if necessary--by calling other doctors and detailing the problem without mentioning that your child also has special needs or a terminal illness. Also call national groups that work with people who have children with the same special needs or illness as your child. These groups can suggest ways to deal with your child's disability or illness and may advise you of the different treatments and therapies available and of your child's prognosis.
If most children with that medical difficulty would receive treatment, but your doctor doesn't recommend it, you must decide if you want treatment and who will administer it.
Certainly any treatment that is life saving or life enhancing should be performed regardless of whether it is done prenatally or after birth. Any treatment that would unquestionably be administered to a "normal" child should probably be given. If death is imminent, that is, if your child will die within hours regardless of anything you can do, you'll probably want to refuse treatments that would merely delay your child's death.
FIRST PHYSICAL CONTACT
The more handling and touching a child experiences, the more that child will develop physically and mentally. Beginning in the hospital, hold and touch your baby frequently. Have relatives or friends spend time with the baby. An elderly person or a nursing home resident may enjoy holding the baby, too. If others will be parenting your baby, they should make contact. Or ask a doctor, hospital, church, or PREGNANCY AIDgency to help you locate parenting substitutes for your baby.
If your child returns to the hospital, see that she or he receives extensive touching and loving. Hang mobiles above your child's bed or tape colorful pictures next to it. Also bring toys to the hospital to amuse your child. This will help your child heal faster, feel secure, and develop mentally.
When their newborn needed several operations, Dwayne and Orlena spent days in the hospital, touching him, playing music, and speaking and singing to him. Because music had such a soothing effect, they began a career writing spiritual children's songs. Their son has grown into a healthy teen.
You'll probably consider parenting your child yourself. Speak to families, foster families, and institutions that are parenting children with special needs or terminal illnesses, or consult local, state, and national agencies that deal with these children. Also join a support group for families of special needs or dying children. Visit some of these families and observe their parenting techniques. Ask as many questions as you like. Learn what help is available and decide if you can parent. Divorced with twins, both of whom had severe disabilities, and another child, Ella helped organize a support group for families with special needs children. The parents help each other and lobby for better services for their children.
Find out exactly how much medical treatment and equipment will cost and if insurance or government medical aid will pay for it. An accountant or insurance agent can help with financial planning. A university engineering department may be able to design custom equipment for your child. Surgery may correct any unusual physical appearances or life-affecting deformities. If you can't pay, make your plight public. Speak to a doctor, hospital, religious group, or PREGNANCY AIDgency. Contact a newspaper; the press may be interested in your story. Community or church groups may raise money to help you, and individual donors may make grants.
When Nellie's twins were born during her twenty-third week of pregnancy, only one survived. This child required expensive equipment to monitor his breathing, and amassed huge medical bills. Nellie had to quit her job to care for her son, and Otto's jobs couldn't pay all their expenses. The couple was ineligible for public assistance.
Following a newspaper feature on their dilemma, Nellie and Otto received donations of food, money, a better car, medical help, an expenses-paid night out, and clothing, as well as on-going financial aid. An agency hired Nellie to do at-home mailing. A year later, a follow-up article brought additional help.
Intense exercises and games help special needs children develop to full potential. A support group, pediatrician, or hospital may refer you to an early intervention program. Certain books can help you organize such a program for your child.
Many children with special needs or health problems are taught in public schools in special classes, vocational classes, or regular classrooms. Your child can function, as much as possible, as a self-supporting citizen. Arrange for home tutoring or other instruction if your child's health problems interfere with regular school attendance.
Often school or government programs provide educational opportunities and financing. You may have to inquire about these programs, or your child may have to take certain tests before being admitted. Sign your consent for testing only when you fully understand the tests, their classification systems, and what programs they apply to. With parents of other children who have special needs or health problems, fight for your child's educational rights.
Donna's newborn was paralyzed from the neck down. Donna sent him to a children's hospital, where he received physical and speech therapy along with the usual grade school subjects. After learning to use a headpointer to type, he excelled in computer science in high school classes for those with activity limitations. After graduation, he worked in the computer industry, then started his own business in computers and electronic aids for persons with disabilities.
If you need help, look for live-in, part-time, or babysitting help, or use respite care. Sometimes government funds can pay for this help. Join other families in lobbying for expanded services. Make a list of the kinds of help you need and give the list to friends who say, "If you need my help, just ask." You might suggest that others volunteer to grocery shop, go to the library, babysit for two hours, or send a child over to play with your child.
You're going to get a lot of parenting advice from friends, relatives, and professionals. Weigh what you hear and use this book to back up any plans you make. Only you know which parenting plan is best for you.
Doctors advised Michelle and her husband to institutionalize their daughter, who was born with cerebral palsy, since she would never speak, hear, or function normally. Instead, they parented and educated the child, even giving her music lessons. When the young woman was a junior in college, over sixty percent of her body was severely burned in a fire. She survived because her mother insisted on treatment. Today Michelle's daughter cannot dress or use the toilet herself, or write. But she is a professional counselor in private practice who writes by dictating to a secretary, and lectures widely on the problems of people with disabilities. A personal nurse helps care for her. She is determined to have others treat persons with disabilities with respect.
As your child grows, you may notice traits that doctors or social workers could miss. Call these to the attention of the professionals. Your child may exceed expectations. Doctors thought that Christopher Nolan, severely brain damaged due to a traumatic birth, was a hopeless case. His mother, however, detected signs of intelligence and had Christopher educated. He is an accomplished poet today.
Your partner and your other children need your attention, too. Take the time to do special things with them--and remember to take time out each week just for yourself. Everyone in your family needs love and nurturing, including you.
THE TERMINALLY ILL CHILD
What if a fatal condition will eventually cause your child to die? You will have to parent your child through medical crises and the stages of death. Terminally ill people receive many treatments that improve and extend their lives but do not cure their illnesses. The previous section as well as this one will help you decide if you can parent a child with a fatal condition.
Your child may live a short while or many years before dying. Tay-Sachs victims gradually lose both their physical and mental abilities and usually die before the age of four. Victims of cystic fibrosis have difficulty breathing, because of abnormally thick body mucus, and live into their teens and beyond. So do victims of muscular dystrophy, a disease of progressive muscle degeneration. Children with Wilson's disease, which causes an abnormal accumulation of copper in the body, will have no symptoms for eight to twenty years and can be treated with drugs. Victims of Huntington's chorea, a progressive disease of the nervous system, live normal lives until the disease begins in midlife.
National research groups and hospitals know the latest drugs and treatments to prolong and improve life for children with terminal illnesses. While these groups can give you the latest prognosis for your child, remember that a new treatment or cure may be around the corner. Face the future with hope as well as realism.
Parenting a dying child means overcoming the anticipation of death and living in the present. Don't deny your baby your love to protect yourself from grief. Know what you are facing by talking to your doctor, a national group (Appendix H), a counselor to the dying, and other parents of terminally ill children. Visit some children with terminal illnesses. Are you emotionally and physically strong enough to parent your child?
A hospice can help your family and your child through the final stages of death. If a hospital cannot refer you to a hospice in your area, a PREGNANCY AIDgency, religious group, or civic group may be able to find volunteers to help you a day or two a month. A counselor or member of the clergy can help you confront your emotions and live one day at a time. Those who care for your child will grow in their ability to love, to give of themselves, and to hope in the face of despair.
ALTERNATE PARENTING PLANS
Making an alternate parenting plan requires courage and honesty. You're making the best choice for both you and your baby. Don't feel guilty about it.
Many excellent group homes exist for special needs and terminally ill children. Appendix H lists a few of them. A hospital, church, doctor, or PREGNANCY AIDgency may be able to refer you to a home in your area. If one home cannot take your child, ask for a referral to another home. When you find a home that seems promising, visit it. Observe how the employees care for the children. Speak to the personnel. Discuss financial arrangements. What expenses are your responsibility? What are covered by insurance, the government, private grants, or the home? In the best homes, children receive loving care.
Tammy and Mitzie both chose institutional care for their children.
For a while, Tammy and Harold parented their daughter Joy, who had multiple disabilities. Then they placed her in an institution until their other children were older and family finances were more stable. The whole family visited Joy frequently until they brought her home again.
Calvin, one of Mitzie and Lane's newborn twins, required constant care. His parents selected an institution to become his legal guardian. Visiting often, they were pleased at the loving treatment he received until his death.
Adoption is a choice for your special needs or terminally ill child, too. When Dora and Oscar discovered that their unborn baby was mentally retarded, they made an adoption plan and tried again for a normal, healthy baby. As Dora and Oscar discovered, many families are eager to adopt special needs or ill children. Perhaps you already know such a family. You can also contact a local, state, or national adoption agency, service, or lawyer. Call national agencies that work on behalf of children with special needs or terminal illnesses (see Appendix H). Their personnel may be able to put you in touch with some adoption agencies. If your child is adopted, you may be able to keep in touch with the adoptive family and visit your child. Yetta and Zack have adopted seven children with severe, multiple disabilities, and Dave and Neala have adopted three. These disabilities include profound retardation, physical limitation, and terminal illness. The couples call these children "rays of sunshine, God's blessings, special gifts of love." Some of the children have parents who keep in touch with the adoptive families.
Foster care, usually located through adoption or child welfare agencies, can be a good option if your child has only a short time to live. Salina has cared for nearly forty foster children over a fifteen-year period, many of them with multiple disabilities, some dying, others with brain damage so severe that they had only the most minimal brain function. The government may pay for foster care. Visit your child and the foster family so you'll feel good about your choice.
If you decide to parent your child, but then change your mind, you can make another plan at any time. Rita and Quinn brought home their child, who had severe disabilities and was dying, but found that they simply could not care for this newborn. As they arranged to place her in county-financed foster care, the infant died.
An adoption agency, member of the clergy, counselor, or PREGNANCY AIDgency can help you work through the many emotions you will experience when you consider alternate parenting plans. If your child is dying, a hospice or member of the clergy will help you deal with grief.
Having a child with special needs or severe health problems changes your life. You must resolve your feelings of anger, despair, and confusion, accept reality, and plan for the future. Desire your child to be all that she or he can be, not all that you wish your child were. "I am who I am, and that's all that I ever can be." A brilliant child may change the world; a child with special needs or health problems may change you.
By making a parenting plan, you acknowledge your child's worth and dignity as well as your own. Both of you deserve an environment in which you can thrive. The challenge, a nurse told a World Federation of Doctors, is to interact with the special needs child on the levels that the child can share--touch, recognition, gentleness, stimulation, presence, and love. Your parenting plan will share these qualities with your child. Your special needs or ill child will never give the world all that a well child could. Depending on your attitude, your child could give much more.
A complete book on this topic, My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis, is online at mychildmygift.com
DEALING WITH PREVIOUS ABORTION
"If I knew then
What I know now,
You never would have died.
I'd have held you close
And nurtured you, and kept you
by my side.
I'd have sung you songs
And treasured you
More than silver,
More than gold;
But this song is all I'll give
To the babe I'll never hold."
--An anonymous woman who
experienced an abortion
You may have had an abortion in the past. An abortion procedure involves violence. Your baby died violently. You may have aborted amid violent emotional upheaval in your life. Now you may understand that you could have given birth. The knowledge that you can never reclaim your baby can torment you. You may hide your painful memories through addictions, sexual excess, wild or deviant behavior, or extreme commitment to career. Now pregnant, you may be remorseful over an abortion.
Why did you abort the last time? Family, friends, your partner, or a clinic counselor may have thought abortion was best for you. You may have felt guilty or upset over your pregnancy and chose to end it without outside pressure from anyone. You probably didn't hate your baby; you just wanted to simplify your life, and abortion seemed like the simplest solution. For a while you were glad you had the abortion, but now you may be very troubled by it. You may even wonder if you have a right to cry since you chose the procedure on your own.
Having this baby will help you understand that you do have a right to grieve. You are no longer denying your pregnancy or your baby--you are admitting to yourself that your baby is dead and that you have forever lost all contact with your child. PREGNANCY AIDgency volunteers and those who specialize in post-abortion counseling, as well as other women who regret their abortions, will help you work through your feelings.
You will have to confront your memories, your regrets, and your reasons for getting an abortion, then forgive others, your baby, and yourself for the role each played in your choice. Letting go of painful memories takes time. You may want to name your aborted baby or have a special memorial service for your child. Eventually, you may consider helping other women who are uncertain about getting abortions.
If your body suffered damage during the abortion, you may need medical treatment. If your injuries were extensive and/or permanent, a lawyer can advise you about suing an abortion clinic or abortionist for what happened to you physically during your "safe," legal abortion.
Do you need help in having this baby or making parenting choices and arrangements? A counselor can help you understand why you don't have to abort again. Regretting previous abortions, Valerie (Chapter Two), Jayne (Chapter Six), and Mercedes (Chapter Seven) went on to give birth. So did Bonnie, who was working to put herself through college when she became pregnant following a vicious rape that left her almost dead. Bonnie continued her education and her job and is now parenting her baby. You, too, can lay the past to rest and build a future for yourself and your child.
LIVING EVEN THOUGH YOUR BABY IS DYING
". . . such a tiny thing,
A bud that had not opened,
A song too pure to sing."
One in four women experiences the death of their unborn or newly born babies. Often death comes unexpectedly. Other times prenatal tests indicate that the unborn child is dying. If you have had a test, request a second test to confirm the diagnosis of a fatal condition. In rare cases, prenatal tests give false positive results. You can never be 100 percent certain that your baby will die until death actually occurs. Appendix E has questions to ask in this situation.
Ectopic pregnancy, discussed earlier in this chapter, will almost always result in your child's death.
Miscarriage (spontaneous abortion) is the spontaneous ending of a pregnancy before the twentieth week and is signaled by bleeding from the vagina. Miscarriage may occur for any number of reasons.
A stillbirth occurs when a baby is born dead after the twentieth week of pregnancy. Babies who die in the womb suffer intrauterine death. If the baby is born alive, but before term, the baby is premature.
If a pregnancy continues several weeks beyond the anticipated due date, the baby is termed postmature. Postmaturity can be dangerous to the child because the placenta may cease to work well when it is too old.
A genetic condition has been with the child since conception; the condition is in the child's genes. Some genetic conditions are fatal while others are not.
A congenital condition happened to the child after conception, either due to influences in the womb or during birth. Some congenital conditions are fatal.
Infant death brings many, many questions. Discuss with your doctor how you can prevent future pregnancy loss.
A simple pregnancy test may not tell you if your baby has died. Pregnancy tests are very sensitive to even a tiny amount of pregnancy hormones in your urine or bloodstream. The level of pregnancy hormones climbs daily as your baby grows. When your baby dies, the hormonal level drops each day. However, enough hormones may be present to give a positive pregnancy test. This is what happened to Lynn, Gisele, and Clarissa, whose stories appear in this chapter. They had pregnancy tests register positive days after their babies had probably died.
Ask your doctor for a pregnancy test that measures your hormonal level. Take the test over in a few days and see if the level is rising or falling. Is the level near the normal limit and rising? Your baby is probably all right. Bed rest, hormonal treatment, or some other technique may avert disaster. Is the level very far below normal and falling? Your baby has probably died. Take the test one more time, a few days later, to be sure.
Advanced ultrasound procedures are proving that many more pregnancies than previously thought begin as twins. Bleeding early in pregnancy may indicate the death of one twin but not the other. If your hormonal levels drop, and then begin to rise again in a few days, you were pregnant with twins. One has died but the other is alive. The living twin may be fine, as Abby's twin was (Chapter Four), or may also die, as happened to Trudy (Chapter Four) during one of her miscarriages.
Many times, pregnancy loss resolves itself. You may miscarry or give birth to a dead child. Bleeding will continue for days, weeks, and possibly over a month, but will end by itself. Sometimes, bleeding is prolonged or very profuse. A doctor may think that some matter is lodged in your womb and may suggest a minor surgical procedure to be sure that your womb is empty and can heal without danger of infection.
Before consenting to any surgical procedure, have a hormonal level pregnancy test and possibly ultrasound to be sure that you are not carrying a living baby.
Many women state that the sounds and sights that occur during certain surgical procedures are upsetting. They prefer to be asleep. Other women opt for being awake, and possibly even refuse painkillers, so that they will physically confront their child's death. Although your doctor may not ask you what you prefer to do, state whether you wish to be put to sleep for any procedure. Your choice may differ from the doctor's usual routine.
BEATING THE ODDS
If death has not already occurred, you may be able to help your baby live. Some pioneers in prenatal infant psychology advise telling your baby of your love and your dreams. Your child may sense your concern. Ask your doctor if surgery, medication, vitamins, hormonal treatments, environmental changes, or bed rest may save your child. Since one doctor may be willing to try a technique that another doctor may overlook, get a second and third opinion.
Despite their doctors' dire predictions about their babies' ability to survive, Leslie and Roberta both did all they could to help their children live.
Doctors advised Leslie to abort her dying unborn baby because his stomach had not closed and his bowels were outside his body. Instead Leslie continued the pregnancy. The baby underwent surgery immediately after he was born and is doing well today.
Roberta had several miscarriages and had to remain in bed for four months to prevent another one. During one pregnancy, her water broke when she was five months pregnant. Although doctors told her that the baby could not possibly survive and was probably "defective," Roberta went on complete bed rest and gave birth two months early. Her premature son is fine today. During another pregnancy, Roberta had to stay in bed for months because she developed placenta previa, a condition in which the placenta develops too low in the womb, where it may detach early in pregnancy and endanger the baby. The child was born full term. During each of these crises, friends from church and prayer groups brought meals and did housecleaning. Roberta's husband and other children helped, too.
Be aware of your unborn baby's movements. Report any underactivity or overactivity to your doctor. Your baby's radically changed behavior pattern may be your first indication that something is wrong. A quick delivery may save your baby's life. When doctors could not detect any vital signs on two monitoring machines, they declared Ami Zilembo, twenty-seven days overdue, as stillborn. After a quick Cesarean section, Ami was born alive and became a healthy child.
Request tests if you are two weeks or more past your due date. Your baby's placenta may be functioning less efficiently, and delivery might be wise.
If premature labor threatens, let your doctor know that you are determined to carry your baby as long as possible. Check with a large city hospital on the latest techniques, treatments, and technologies to prevent premature labor. Ask your doctor to try these. Follow your doctor's instructions, try to remain calm, and count each day as a victory. This is what Abby and Barb (Chapter Four) and Roberta (this chapter) did. They were able to stop premature labor, at least for a time.
Very small premature infants sometimes survive. Trent Petrie, born twenty-two weeks after conception and weighing only twelve ounces, survived because his parents chose life support systems for him. Today, although functionally blind due to his extreme prematurity, Trent is otherwise healthy.
Jacqueline Benson also weighed twelve ounces at birth and survived. Four months premature, Monica Mere weighed thirteen ounces and was delivered early because her mother was suffering from a disease in which the liver fails and the blood system stops its clotting process. Both Monica and her mother are healthy today.
Babies born six months after conception have over a 50 percent chance of survival. Most will have few, if any, permanent difficulties. Breast milk is the best food for preemies. If your child is too small to nurse, pump your breasts and give your baby breast milk by bottle or feeding tube. Breastfeeding support groups can advise on breastfeeding premature infants. Despite your child's tubes, wires, monitors, and machines, determine to speak to, touch, and play with your baby as much as possible, as did Kelsey and Vance, whose daughter was born three-and-a-half-months early. Their incredibly long hours at the hospital resulted in a daughter who is now developing normally. Their child, like all premature babies, thrived on human attention and stimulation.
LOVING THE UNBORN BABY WHO HAS NO CHANCE OF SURVIVAL
The knowledge that your baby is dying within you can evoke the most brutal emotions you will ever face.
Your decision to allow your baby's birth and death to take place naturally may meet great opposition. However, many mothers who know that their babies can't survive still choose to give birth.
Monica was seven months pregnant when ultrasound revealed that her unborn baby had no kidneys and would be unable to survive outside her womb. The baby was becoming less and less active as his own body wastes poisoned his system. Monica's doctor began to monitor the pregnancy weekly. If the baby died and Monica did not go into labor, the doctor could induce labor to prevent the baby from infecting Monica if his body began to decompose.
Monica cherished each day that her baby lived, and imagined that he was warm and comfortably relaxed in her womb. When Monica went into labor a month early, she and her husband had the baby baptized. After doctors confirmed the child's condition, Monica and her husband had the life-support system disconnected from their baby and held him until he died in their arms. Monica treasures her memories of that morning with her son.
If doctors determine that your baby will be unable to survive after birth, some people may try to persuade you to end your pregnancy early. Even though you may want to carry your baby to term, others may argue against this decision. Following are some suggested responses to comments or questions that you may hear.
"Why continue the pregnancy when your baby has no chance of survival?"
"I know that my doctor probably is correct with the diagnosis, but I want to make absolutely sure by having my baby tested after birth. If the prenatal test results are wrong, I want my baby treated."
"You won't be getting an abortion. You'll just be ending your pregnancy early."
"My baby is still alive. Even a healthy baby couldn't survive being born this prematurely."
"You'll lose valuable time in conceiving a healthy baby if you don't end this pregnancy."
"My cervical and uterine muscles aren't ready to deliver my baby yet. If labor is induced or if I get an abortion now, those muscles might be weakened. I don't want to take that chance because it might cause me to miscarry or to deliver my next baby prematurely."
"You are only a life-support system for your dying baby. Why don't you disconnect the life support?"
"Every pregnant woman is naturally a life-support system for her unborn baby. When my baby is born, I won't choose artificial life support."
"Your unborn baby is suffering."
"Babies who die after birth often die peacefully. My baby may not be suffering at all. If I thought that my baby was in pain, I would ask my doctor to do something to ease the pain."
"Your baby might die and start to decompose inside you. Geneticists can't use decayed cells to determine what caused your baby's problems or whether they can happen again."
"If I was concerned about this, I'd request an amniocentesis before my baby dies. Geneticists can examine my baby's cells to determine if the problems are genetic in origin. In addition, my doctor is checking me weekly. If my baby dies and I don't go into labor, I'll have labor induced so that my baby won't start to decompose." (Refer to Chapter Four for a discussion of amniocentesis.)
"It would be better for you emotionally to end this pregnancy now."
"I don't think so. I'll admit that sometimes I do feel hopeless, angry, and unable to endure one more day. But that's how most people feel at times if they're caring for a terminally ill loved one. By allowing my pregnancy to end naturally, I won't ever wonder if my baby might have lived. I'm in touch with people who are helping me deal with my grief [perhaps a hospice or a support group for parents who experienced infant loss]. I am cherishing each day that my baby lives even though I am making funeral plans."
When your baby is born, you will probably be amazed by your child's beauty despite any abnormal features. If your baby dies, you will gradually get on with your life, but you will never forget your baby. Time does not erase that kind of love.
When Marcia learned that her thirty-two-week-old unborn daughter was deformed and dying, she wanted the pregnancy over, now. Her doctor refused to induce labor. Marcia's hatred, anger, and bitterness toward her baby slowly evolved into love. Even as she made funeral arrangements, she prayed that her baby would live a while. The dying newborn had abnormal features but was still beautiful. Asking that the child be taken off a respirator, Marcia and her husband held and caressed the baby as she died slowly and peacefully. The family grieved a long time, but are glad that they had a natural birth experience.
PARENTING THE DYING NEWBORN
"I didn't forget to run my fingers along
her pug nose and talk to her in my lingo . . .
"I didn't forget to take pictures of her
and note the color of her eyes.
"I didn't forget to cry in front of her
and beg her to get better . . ."
--Marion Cohen, Intensive Care #2
If your child is born alive but dying, you will face life's most bittersweet experience--nurturing an infant while watching life ebb away. Love and comfort your child while death comes, as did Monica and Marcia, whose stories appear earlier in this chapter.
If your child is suffering, speak to a doctor about it. Almost always, drugs and technologies can greatly reduce or eliminate suffering. Loving and touching can also help your child feel much better.
DEATH OF A TWIN
If you are pregnant with more than one child, one or more of your babies may die, leaving other children alive. This happened to Abby (Chapter Four). The need to both grieve and rejoice, to release and to bond, can be confusing. Fearing the death of your living children, you may become overprotective of them.
Speak about your dead babies. Find out why they died. Have a baptism or dedication service for your living children, a memorial service for your dead ones. Grieve at times and rejoice at others.
Children seem to retain a subconscious sense of togetherness with dead siblings, probably because they were womb mates. This manifests itself in drawings and conversation, even if the living children were not told of the dead ones.
When your children are old enough, tell a story about the ill siblings who died and how sad you felt. Tell your living children how happy you are that they are alive. Assure them that they did nothing to cause the death. This story will pave the way for additional questions later. Answer questions openly. Accept emotions as they arise.
When Sue spontaneously aborted one twin, she had to separate rage from hope. Ill throughout the pregnancy, she struggled through postpartum depression to bond with the living twin. She feels that the baby senses the loss of his brother, and she plans to tell him about his sibling when he is older.
You will have your own way of saying good-bye. You may choose never to see your baby, or you may try one or more of the suggestions listed below. Talk over what you can emotionally handle with someone you trust or a member of a hospital staff or national support group for parents experiencing infant death (see Appendix H).
You may wish to hold your baby. Tenderly wrap the baby (or the remains) in a soft cloth or blanket. Holding your baby makes your child's life and death real and affirms your right to grieve. If your child is alive, you will be able to caress your infant as death, which is often peaceful, comes. You may wish to photograph your baby.
After many fertility treatments, Rene became pregnant. When the baby stopped moving eight weeks before his due date, doctors performed an emergency Cesarean section and discovered that the baby had no brain activity. In consultation with doctors, Ed and Rene had the baby removed from a respirator. They held, caressed, photographed, and videotaped their five-day-old son, who died in their arms. Rene's bitter feelings toward women with healthy babies took a while to resolve. Having mementos of the birth helped. So did an autopsy report that helped Rene realize that she could not have prevented the death. The baby had a genetic brain abnormality which caused his death.
Before any surgical procedure begins, tell your doctor if you'd like to hold your baby's remains or have them for a funeral. Many doctors never consider that a woman would want the remains. If a lab must perform tests on the body, you can usually have the body later, if you ask.
Naming your baby acknowledges your child's existence. If you do not know your baby's sex, you may want to guess at it, or choose a unisex name such as Leslie, Sydney, Terry, Marty, Lee, Pat, Robin, or Jody.
Some parents use a funeral or memorial service to say good-bye and to let others know that they are grieving. A PREGNANCY AIDgency, member of the clergy, or funeral director can help you plan. The service may be simple or elaborate, private or public, quiet or vibrant with music. You may choose cremation or burial for a baby whose body you have. Often a cemetery will bury a miscarried or stillborn baby without charge.
A funeral home may have available caskets and burial vaults for infants, small children, and miscarried babies. The smallest sizes are available through the Pregnancy and Infant Loss Center (see Appendix H). If you anticipate that your baby may die, you may ask a funeral home to order a small casket. Hopefully, you will not need it, and the funeral home can have it on hand for someone else whose baby has died. Often funeral parlors will make free arrangements for the burial of very small infants.
You may find much comfort in holding, washing, and dressing your child for burial. Small burial gowns are available, or you can purchase an appropriate piece of newborn or doll's clothing and dress your infant. If you miscarried early in pregnancy, you can hold a memorial service regardless of whether you have the remains.
Five women memorialized the losses of their children in five touching ways.
When Gisele's first pregnancy ended in miscarriage, she wrote a poem to her baby, whom she named Grace. She and her husband memorialized Grace by taking a long walk near the ocean. Here they prayed for Grace and for themselves.
Clarissa named her three miscarried babies "Chris" and baptized each of their remains, then buried them with her family present. When she retrieved a tiny, intact five-week embryo from the third miscarriage, a member of the clergy held a private memorial service for the family. Then Clarissa and her family took the baby to the cemetery to be buried, without charge, in the stillborn vault.
When forty-three-year-old Lara's unborn baby died after Lara was beaten by her boyfriend, a PREGNANCY AIDgency that had arranged shelter for Lara now found a funeral director to donate the costs of her infant's funeral.
Betsy and Glenn planned a large funeral for their premature first child. They both readied their child for burial and participated in church readings.
After Carol and her boyfriend Wes changed their minds about having an abortion, their baby was stillborn on Christmas Day. A PREGNANCY AIDgency volunteer helped them through the grief and shock. Carol, Wes, and their parents visit the baby's grave often, bringing flowers.
If you were making an adoption plan for your baby, the adoptive family should see and handle the body and participate in any funeral arrangements or memorial services. In the book Daddy, I'm Pregnant, the anonymous author Bill tells how his daughter Angela and the adoptive family she had chosen both made funeral arrangements when Angela's infant daughter died.
Being left childless brings a startling grief. You grieve not only for your lost motherhood, but also for the infant, toddler, child, teen, adult, and grandparent the world will never know. This will happen whether or not you intended to be pregnant.
The persistence and depth of your grief may surprise you. You have a right and a need to grieve, to be angry. Let your tears flow. Allow yourself time to feel better. You may grieve for a year or more.
Nevertheless, some people will assume that you should quickly get on with your life and conceive again. If you have one living child of a multiple birth, some individuals may wonder why you are grieving at all. And, if your pregnancy was a crisis, some people may feel that your baby's death should bring relief. In trying to encourage you, people sometimes make hurtful, insensitive remarks. Say, "Thank you for trying to encourage me. I know I'll feel better in time." Then seek out those who can understand your pain.
Talk to a relative, lover, confidant, or member of the clergy, or to another mother who experienced infant death. Call your doctor, hospital, or PREGNANCY AIDgency for referral to a support group of people who have experienced infant or child loss or who are parenting very ill or dying children. Attend meetings of this group or speak to a member by phone or in person. You will feel much love and understanding and will learn some practical ways of dealing with the future.
Darlene (earlier in this chapter) attends a support group for parents who have experienced pregnancy and infant loss. So does Amanda, whose newborn died on Christmas Eve. The meetings help Amanda to deal with her grief and anger. They are also a means of preserving her child's memory and helping other parents.
If you want to know what caused your baby's death, request an autopsy, as Ed and Rene did (earlier in this chapter). Ask how long it will take to get the results. Request a copy of the autopsy and have a doctor thoroughly explain it. If your doctor doesn't understand the terminology, ask other doctors or medical experts to explain the report. A PREGNANCY AIDgency may be able to find a doctor to explain the terminology to you.
If your baby had special needs or a terminal illness, doctors may wonder why you want an autopsy. However, you have a right to an autopsy no matter what your child's condition.
If you feel that someone caused your child's death, either from accident, misdiagnosis, physical abuse, poor medical treatment, or another cause, a lawyer can tell you if you can sue for damages. Going to court is a costly, emotionally draining experience. If your child died before birth, it may be difficult to collect damages, as the law may not consider children to be persons until they are born. However, you may be able to collect for emotional damages.
CARE FOR THE GRIEVERS
Take care of yourself. Eat a nutritious diet and drink plenty of fluids. Avoid caffeine, which may increase tension; alcohol, a depressant; and drugs. You will heal faster if you face your emotions head on and work through them.
When your doctor allows, exercise to release tension. Rest often, even if you don't sleep. Do less. Depression may keep you from maintaining a full schedule for a while. Write down your feelings, talk about them, or record them. Even if you are angry or bitter, continue your communication with God. Every so often do something you enjoy.
Maintain communication with your partner if he is still part of your life. Both of you will grieve differently. Men often conceal grief or are poor at expressing feelings. Share your feelings and open up to each other so that your relationship remains strong. Resume sexual relations when both of you are ready. Discuss if and when you want to conceive again. Assume nothing about your partner's feelings. Talk things over.
Help your children express their feelings about the death. Compare your baby's death to the death of someone else your children knew or to death in nature. Show your children that you love them. Let them know that nothing they thought or did caused their sister's or brother's death. Involve them in funeral or memorial services. Answer their questions honestly. Allow your children to grieve in their own unique ways and in their own time.
Some women find that helping others who are experiencing similar losses is very therapeutic. Others work with ill children. Still other women go on to parent children, either biological children or adopted children, and eventually feel whole again. One mother acknowledges the baby she miscarried in every formal portrait taken of her large family. In these portraits, one living child holds a rosebud to represent the baby who had died. Even though you will always remember your baby, time truly is a great healer. Deal with your grief. Hope for the future.
When Isaac and Rayanne lost all five of their children to stillbirth, miscarriage, or death upon birth, they turned bitterness into love by adopting two children. Bernadette and her husband also lost five children, three to miscarriage and two to prematurity. They also have adopted two children. Bernadette is counselor of a large support group for parents grieving the loss of a child, and editor of the group's newsletter. Issac and Rayanne belong to such a group and help other hurting families.
GIVE YOURSELF TIME
In the poem Our Wee White Rose, Gerald Massey wrote about the death of a child. "You scarce would think so small a thing/Could leave a loss so large." The healing process begins when you first hear that your baby is dying or dead. As you work through the anguish of death, plan a funeral or memorial service, and cry your way through the period that follows infant loss, you will begin to experience healing.
Healing takes time. Lots of it. You will get on with your life, but you will still remember losing your child. Your child will have helped you to grow, even though your child died. Memorialize your child by turning your grief into service to others.