HAND - Helping After Neonatal Death, is a California non-profit 501(c)3 corporation, founded in 1981 to help parents, their families and their healthcare providers cope with the loss of a baby before, during, or after birth. To connect to site please click on hand.
MEND - Mommies Enduring Neonatal Death is a Christian not-for-profit corporation whose purpose is to reach out to those who have lost a child due to miscarriage, stillbirth or early infant death and offer a way to share experiences and information through support groups, the quarterly newsletter, and our Internet web site. To connect to site please click on bear with cloud.
When a baby is born alive, but dies soon after birth, parents are devastated. Most had been happily anticipating the birth of a healthy baby. Then their dreams are abruptly shattered when they learn that their baby was born very sick and is not expected to survive.
Sadly, in 1998, about 19,000 babies died in their first month of life. Death in the first 28 days of life is referred to as neonatal death.
During this difficult time, parents may feel helpless, frightened, angry and emotionally overwhelmed. After their baby dies, parents need time to grieve. As parents attempt to cope with their loss, they may have many questions about why this happened to their baby. The following may begin to answer some of these questions.
What Are the Most Common Causes of Neonatal Death?
Neonatal deaths often occur because a baby was born with birth defects or because he or she was born prematurely (before 37 completed weeks of pregnancy; a full-term pregnancy is 38 to 40 weeks). Some premature babies also may have birth defects, which may cause or contribute to their death.
The most common cause of neonatal death is birth defects. These cause about 25 percent of neonatal deaths. Sometimes parents learn about their babys birth defects before birth, through prenatal diagnosis (using tests such as ultrasound, amniocentesis and chorionic villus sampling). Ultrasound can help diagnose structural birth defects, such as spina bifida (open spine), anencephaly (brain and skull defect), heart or kidney defects. Amniocentesis and chorionic villus sampling are used to diagnose chromosomal abnormalities, such as Down syndrome, and numerous genetic birth defects. Prenatal diagnosis of life-threatening birth defects may help parents begin to cope with their grief over their babys expected death.
Prematurity is another important cause of neonatal deaths. About 11 percent of babies are born prematurely. A minority of premature babies have birth defects, which may cause their death. Many more face life-threatening health problems that result from being born too small and too soon.
Prematurity and its complications cause about 20 percent of neonatal deaths. The earlier a baby is born, the more likely he or she is to die. Only 5 to 10 percent of babies born at 23 weeks of pregnancy survive, while about 50 percent of babies born at 24 weeks and 80 percent born at 26 weeks survive.
The causes of premature delivery are not thoroughly understood. In some cases, a pregnant woman may have health problems (such as high blood pressure) or pregnancy complications (such as placental problems) that increase her risk of delivering prematurely. Women who are pregnant with twins (or other multiples) also are at increased risk. More often, preterm labor develops unexpectedly in a pregnancy that had been problem-free, sometimes leading to the birth of a tiny, sick infant.
Less common causes of neonatal death include problems related to complications of pregnancy, complications involving the placenta, cord and membranes, infections, and asphyxia (lack of oxygen before or during birth).
Which Birth Defects Most Commonly Cause Neonatal Deaths?
Heart defects are the most common birth defect-related cause of infant deaths (neonatal deaths as well as deaths in the first year of life). Heart defects cause nearly one-third of these deaths.
About one in every 125 babies is born with a heart defect. Because of improvements in the surgical treatment and medical management of these defects, most affected babies survive and do well. However, some babies with severe heart defects may not survive until surgery, or may not survive the procedure. Many babies who die of heart defects in the first month of life have a specific heart defect called hypoplastic left heart syndrome, in which the main pumping chamber of the heart is too small to supply blood to the body. An experimental surgical procedure has saved a small number of affected babies, but the outlook remains grim. In most cases, doctors do not know why a baby is born with a heart defect, although both genetic and environmental factors are believed to play a role.
Small, underdeveloped lungs that lack sufficient lung tissue and/or airways are another common cause of death. Sometimes, one or both lungs does not develop at all or is underdeveloped for reasons that are not known. In most cases, underdeveloped lungs occur because other birth defects interfered with lung development, or due to pregnancy complications (such as premature rupture of the membranes) that result in insufficient amniotic fluid (which is crucial for lung development). Sadly, about 70 percent of babies with underdeveloped lungs die, usually in the neonatal period.
Chromosomal abnormalities are a common cause of neonatal death. Humans normally have 46 chromosomes, the tiny thread-like structures in our cells that carry our genes (the basic units of heredity that dictate all traits from eye color to workings of internal organs). However, sometimes a baby is born with one (or occasionally more) too many or one too few chromosomes. In most cases, when an embryo has a chromosomal abnormality, it will not survive, and the pregnancy will end in miscarriage. Sometimes the fetus does survive until birth, only to die in the early weeks of life. For example, babies with an extra copy of chromosome 18 or chromosome 13 (called trisomy 18 or trisomy 13) have multiple birth defects and generally die in the first weeks or months of life. Babies with less severe chromosomal abnormalities, such as Down syndrome (trisomy 21) often survive, although affected children have mental retardation and other serious problems.
Birth defects involving the brain and central nervous system are another important cause of neonatal death. One example is anencephaly, in which most of the brain and skull are absent. Affected babies may be stillborn or die in the first days of life. This birth defect often can be detected before birth with a blood test , ultrasound or amniocentesis. It often can be prevented in subsequent pregnancies when the woman takes the B vitamin folic acid prior to and in the first months of pregnancy. A woman who has had a baby with anencephaly should consult her doctor prior to another pregnancy to find out how much folic acid to take before she attempts to conceive. Generally, a higher-than-normal dose is recommended (usually 4 milligrams).
What Causes Death in Premature Babies Who Dont Have Birth Defects?
Premature babies, especially those born at less than 32 weeks of pregnancy and weighing less than 3-1/3 pounds, often develop respiratory distress syndrome (RDS). About 40,000 babies develop RDS each year.
Babies with RDS have immature lungs that lack a chemical mixture called surfactant, which keeps the small air sacs in the lungs from collapsing during breathing. They do not get enough air in and out of their lungs. Since 1990, widespread use of surfactant treatment has greatly reduced the number of babies who die from RDS and has greatly decreased the severity of RDS in survivors. However, about 1,200 babies a year still die in the neonatal period due to RDS.
About 25 percent of very premature babies develop bleeding in the brain that can result in death. These tiny babies also may develop life-threatening intestinal and heart problems. Couples with a family history of inherited diseases can discuss the possibility of prenatal diagnosis with their doctor or genetic counselor.
While tragic deaths due to prematurity are still too common, the outlook for these babies is improving. Surfactant and other treatments are saving more of these babies after birth. And treatment before birth can sometimes prevent or lessen the complications of prematurity. Women who are likely to deliver between 24 and 34 weeks of pregnancy should be treated with drugs called corticosteroids, which speed maturation of fetal organs. Studies show this treatment reduces infant deaths by about 30 percent, and reduces the incidence of RDS by 50 percent and brain bleeds by 70 percent.
Parents of critically ill babies in the intensive care nursery need support from family, friends and health care professionals during this sad and anxious time. They should never hesitate to ask their babys doctors and nurses about their babys comfort and the care he or she is receiving. Parents also may want to ask how they can share in their babys care so they can feel that they are helping their baby, as well as creating memories of their baby for the difficult days ahead. Some hospitals have support groups where parents of very sick newborns can share their feelings, as well as support groups for parents whose babies have died. Parents who are having trouble coping with their grief, before or after the babys death, should ask their health care provider for a referral to a counselor who is experienced in dealing with infant death.
Parents whose baby had a birth defect also should consider consulting a genetic counselor. These health professionals help families understand what is known about the causes of a birth defect, and the chances of the birth defect recurring in another pregnancy. Genetic counselors also can provide referrals to medical experts as well as to appropriate support groups in the community.
Copied from March of Dimes Fact Sheet
Ectopic Pregnancy ~ A Comprehensive and Compassionate Information Resource
This site has information and helpful resources, compiling facts, stories, poetry and other items of interest to those who have experienced an ectopic pregnancy. To connect to site please click on bunny.
Ectopic Pregnancy Facts
Ectopic pregnancy is the number one cause of death of women in the first trimester of pregnancy. With the numbers of ectopic pregnancies on the rise, it is important to understand more about ectopic pregnancies.
Some Facts -
When we think of the term ectopic pregnancy we frequently imagine a pregnancy that has occurred in the fallopian tube. This is an accurate representation about 95% of the time. The other forms of ectopic pregnancy are: abdominal, ovarian, cornual, and cervical.
While we don't always know the cause of an ectopic pregnancy there are certain risk factors that we can notice:
*Pelvic Inflammatory Disease (PID) or Salpingitis
*Previous Ectopic Pregnancies
*Previous pelvic or abdominal surgery
*Previous Tubal Ligation
*Intrauterine device in place
How do you know -
There are several symptoms of an ectopic, some of which are "normal" pregnancy occurrences. If you suspect that you are pregnant and have any of these symptoms, call your practitioner:
*Weakness or Dizziness
You may not have an ectopic pregnancy, but it could be caused by something else which may need treatment. Please, seek treatment.
Diagnosing an Ectopic -
Testing for ectopic pregnancy is actually difficult, because the answers are not always clear cut, nor are the always available right away. Your hCG levels may be tested to check the rate of rise, they normally double about every two days in a normal pregnancy, this alone is not an indicator of an ectopic pregnancy.
Ultrasound is frequently used, along with vaginal ultrasound to try to visualize the pregnancy. If a uterine pregnancy is confirmed then the chance of ectopic pregnancy is rare. Sometimes it is too early to diagnose an ectopic via ultrasound, and the exam will have to be repeated. If an ectopic pregnancy is visualized then you will proceed to treatment options available depending upon your situation.
Sometimes in urgent situations a laparoscopy procedure will be done to provide diagnosis and treatment. This is done in an operating room as surgery. If you do have an ectopic pregnancy, most likely you will have the surgical treatment done at this time.
There are two main types of treatment: chemical and surgical.
Chemical treatment is done with a drug called methotrexate. It is used in non-urgent cases to dissolve the pregnancy without harming the tubes and other organs. Repeat hCG levels will be taken to ensure that the pregnancy is dissolving and that further treatment is not needed.
Surgery is usually done in cases that are further along in their pregnancy or have another medical reason to not use the chemical process. It may be necessary, especially when the tube ruptures or there is other damage. Sometimes the woman will lose her tube and possibly her uterus if the bleeding can't be stopped.
Facing pregnany again -
Once your recovery is physically underway you may question your ability to have a successful pregnancy. If your tubes were not damaged you have excellent chances of getting pregnant again, although a higher than average risk of having another ectopic pregnancy. If your tubes were damaged or removed, you still have pregnancy options.
Beyond physical healing there is emotional healing. I personally have experienced two ectopic pregnancies. Both were treated with a wait and see approach and methotrexate, one of which I had exploratory surgery which found a bleeding liver. Even with our other pregnancy losses these were especially hard on Kevin and I because of the added danger of losing my life and/or fertility. I highly recommend talking to someone about your experiences.
Ectopic and Molar Pregnancy
While most pregnancies result in the birth of a healthy baby, occasionally a pregnancy goes wrong right from the start. Ectopic and molar pregnancies are examples of this. Sadly, neither ectopic nor molar pregnancies can result in the birth of a baby. And without prompt treatment, both can endanger the life of the pregnant woman.
What Is a Molar Pregnancy?
In a molar pregnancy, the early placenta develops into a mass of cysts (called a hydatidiform mole) that resemble a bunch of white grapes. The embryo either does not form at all or is malformed and cannot survive. About one in 1,000 pregnancies is molar. Women who are over age 40 or who have had two or more miscarriages are at increased risk of molar pregnancy.
There actually are two types of molar pregnancy, complete and partial. With a complete mole, there is no embryo and no normal placental tissue. With a partial mole, there may be some normal placenta and the embryo, which is abnormal, begins to develop.
Both types of molar pregnancy arise from an abnormal fertilized egg. In a complete mole, all of the fertilized eggs chromosomes (tiny thread-like structures in cells that carry our genes) come from the father. Normally, half come from the father, and half from the mother. Shortly after fertilization, the chromosomes from the mothers egg are lost or inactivated, and those from the father are duplicated. In most cases of partial mole, the mothers 23 chromosomes remain, but there are two sets of chromosomes from the father (so the embryo has 69 chromosomes instead of the normal 46). One way this happens is fertilization of an egg by two sperm cells.
Molar pregnancy poses a threat to the pregnant woman when the mole penetrates deep into the uterine wall, which can result in heavy bleeding. Occasionally, a mole can turn into a choriocarcinoma, a rare pregnancy-related form of cancer.
What Are the Symptoms of a Molar Pregnancy?
A molar pregnancy may start off like a normal pregnancy. Then, around the 10th week of pregnancy, vaginal bleeding, which often is dark brown in color, usually occurs. Other common symptoms include:
severe nausea and vomiting, abdominal cramps (from a uterus that is too large due to the increasing number of cysts), and high blood pressure.
How Is a Molar Pregnancy Diagnosed?
An ultrasound examination can diagnose a molar pregnancy. The doctor also will measure the levels of hCG, which often are higher than normal with a complete mole, and lower than normal with a partial mole.
How Is a Molar Pregnancy Treated?
A molar pregnancy is a very frightening experience. Not only does the woman lose a pregnancy, she learns that she has a slight risk of developing cancer. In order to protect the woman, all molar tissue must be removed from the uterus. This usually is done using a procedure called suction curettage, under general anesthesia. Occasionally, when the mole is extensive and the woman has decided against future pregnancies, a hysterectomy may be done.
After the procedure, the doctor will again measure the level of hCG. If it has dropped to zero, the woman generally needs no additional treatment. However, the doctor will continue to monitor hCG levels for one year to be sure there is no remaining molar tissue. A woman who has had a molar pregnancy should not become pregnant for one year, because a pregnancy would make it difficult to monitor hCG levels.
How Often Do Moles Become Cancerous?
After the uterus is emptied, about 20 percent of complete moles and 2 percent of partial moles persist and the remaining abnormal tissue may continue to grow. This is called persistent gestational trophoblastic disease (GTD). Treatment with one or more cancer drugs cures GTD nearly 100 percent of the time. Rarely, a cancerous form of GTD called choriocarcinoma develops that spreads to other organs. Treatment with multiple cancer drugs also is very successful at treating this cancer.
What Is the Outlook for Future Pregnancies After a Molar Pregnancy?
If a woman has a molar pregnancy, her outlook for a future pregnancy is good. The risk that a mole will develop in a future pregnancy is only one to two percent.
Both ectopic and molar pregnancies are medical emergencies. As she undergoes diagnosis and treatment, the pregnant woman may be concerned mainly about her own health. Afterwards, the woman and her partner feel relief that she has come through the ordeal. Then grief over the loss of the pregnancy may hit them. As with any couple who has lost a pregnancy, they need time to grieve and to recover emotionally. This is a difficult time, and it may be helpful for the couple to speak with a counselor who is experienced in dealing with pregnancy loss.