Information for parents and families
You may be looking up information on stillbirth because you want to learn more about it or you have experienced it yourself or you know someone who has. We empathize and understand the impact, and we hope that this information is helpful. Many of our members have had their own losses – stillbirth or miscarriage – and along with our experts want to pass on their knowledge and experiences. What follows are some definitions, explanations, what we know about stillbirth at this time, and emerging research that may show some promise.
You will also find some bereavement sections that offer practical information, support and resources. Since ISPID is not a direct provider of support, we wish to help you find the support and information you may need. Our main expertise relates to SIDS, SUID, and stillbirth rather than miscarriage although you will find resources at the end that offer support to families who have experienced miscarriage.
How often does stillbirth happen?
While stillbirth rates have decreased in developed countries by 50% since the 1960s, there are still about 26,000 babies stillborn in the U.S. each year. That is over 70 babies each and every day in the U.S. alone and 17 babies in the United Kingdom. In developing countries the stillbirth rate is considerably higher than in developed countries.
- One in every 150 pregnancies ends in stillbirth in developed countries.
- More than fifty percent of stillbirths happen in the third trimester and many of these appear to be otherwise healthy babies.
- Five to thirty percent of stillbirth deaths happen during labor and delivery. Developing countries generally have a much higher percentage of stillbirths during labor and delivery.
- Many full-term stillbirths occur in what appear to be otherwise healthy, low-risk pregnancies.
What are some common causes of stillbirth?
The growing body of stillbirth research has increased considerably particularly in the past 10 years. That said, stillbirth is an incredibly complicated birth outcome and there is still a significant need for rigorous stillbirth investigation. In stillbirths where a cause was identified by an autopsy, some common causes include:
- Infections (including viral infections) of the mother, baby or placenta
- Birth defects or abnormal chromosomes
- Problems with the placenta
- Cord accidents or abnormalities
Developing countries also add these common causes:
- Pre-eclampsia (maternal high blood pressure, protein in urine affecting the placenta)
- Asphyxia of baby or obstructed labor (lack of oxygen that can occur during delivery)
It is important to note that nearly two-thirds of all stillbirth deaths remain unexplained. Experts warn this is most likely due to the fact that in many hospitals autopsies are not possible, or are not required or even encouraged by doctors. Standardized, comprehensive autopsies are not done routinely and are often not paid for by insurance.
There is an effort underway to standardize autopsies and encourage them. As more autopsies occur, more data will be collected that will lead to a better understanding of the causes of stillbirth. See Are autopsies important? If so, why? for more details on autopsy.
Is stillbirth hereditary?
The word stillbirth describes a devastating outcome of a pregnancy and not the cause. There are some familial tendencies that may put pregnancy at higher risk, such as having an extra chromosome. But this is not usually the reason for a pregnancy loss. Stillbirth is not uncommon and therefore women within the same extended family may experience a stillbirth. Also, since stillbirth is not uncommon, there are women who may face another stillbirth after a loss.
What are my chances of having another stillbirth or miscarriage with my subsequent pregnancy?
No one can guarantee that a baby will be born healthy and not be stillborn. Having experienced stillbirth you will naturally feel vulnerable and are more aware that stillbirth or other problems might occur. Some new research suggests miscarriage occurs more often following stillbirth. Other research suggests recurrence risk depends on the cause of the stillbirth and some pregnancies may be five times more likely to end in stillbirth. For that reason, subsequent pregnancy should be considered high risk so that you may be more closely monitored to help reduce risk.
It is important to note that most subsequent pregnancies do end in healthy babies. The more you do to help your body be healthy prior to another pregnancy, the better the chance is of avoiding loss.
What increases my risk of having a stillbirth?
Recent research has found the following risk factors for stillbirth:
- Mothers over 35 years of age and mothers under 20 years of age
- Mothers who smoke
- Mothers who are obese prior to getting pregnant (BMI ≥ 30)
- First pregnancy and pregnancy after four previous pregnancies
- Multiple pregnancies and/or babies conceived by in vitro fertilization (IVF) techniques
- In some places certain ethnic groups are at higher risk of stillbirth. For example in the U.S., African-American, Hispanic, American Indian, and Alaskan Natives are at higher risk than white women. Researchers attribute some of this risk to greater risk of preterm birth in these populations. However, more research is needed to understand other contributing factors to disparities including differences in preconception health, infection, income, and access to quality health care.
- A previous baby with low birth weight, SIDS, growth restriction or a previous stillbirth
- Highly stressful lives such as homelessness or other extreme lifestyles
Medical disorders associated with stillbirth
- Infections of the mother, baby or placenta including HCMV and Group B Strep, and in developing countries syphilis and malaria
- Fetal growth restriction (babies who are very small or not growing normally)
- Placenta problems: including development of the placenta and maternal adaptation to pregnancy, insufficient blood flow or placental abruption
- Diabetes or hypertension
- Thyroid disorders, renal disease, and systemic lupus
- Cord abnormalities including hypercoiled or undercoiled cord, excessively long or short cords, velamentous cord insertion
- Pre-eclampsia and asphyxia of baby or obstructed labor. These are more common in developing countriies.
Care for Low Blood Pressure
Results of some recent studies suggest that low maternal blood pressure may be a risk for stillbirth. Also, it has been observed that low blood pressure may be a risk when combined with a cord anomaly or otherwise compromised baby. Left-lateral position is considered by many clinicians to be the optimal position for pregnant women with low blood pressure or who are in premature labor, however, more research is needed to confirm this.
Though this area has not been fully researched, it is becoming a common practice for clinicians to ask women with low blood pressure to lie on their left side to increase uterine blood flow. One very recent study from New Zealand has shown left lateral sleeping position among pregnant women to have a protective effect against stillbirth. Therefore, it may be best for a pregnant woman to lie on her left side when possible, however more research is needed to confirm this.
Care for Problematic Cord and Placenta
Though it is not known whether routine ultrasound at 28 weeks will help to save babies’ lives, some professionals are advocating an ultrasound at this time as part of standard care to help identify cord and placental anomalies, fetal growth restriction (FGR) or other problems.
The awareness of any problems with your baby’s cord and placenta may offer an explanation if there is change in movement or heart decelerations during appointments. The ultrasound can reveal only the present condition and may not predict whether a finding will lead to an emergency situation. Most babies with unusual cords are born normally and are completely healthy.
There is wide variation in the ability of the technicians to identify problems. Only very well-trained technicians may be able to pick up cord or placental anomalies. Though one study out of the UK showed that identifying FGR resulted in better outcomes, even if this extra vigilance does identify such problems, there is little agreement on what to do once a problem is identified.
For babies who have problematic cords or placenta, no treatment for stillbirth prevention has been proven. There has not been consistent, widespread success for those medical teams working to prevent sudden accidents in the womb. Kick counting and ultrasound might help to carefully monitor such a pregnancy. However, at this point in time early delivery is the only likely course of treatment to save the baby when the situation becomes critical.
The option of early delivery should be considered very carefully since there is mounting evidence that early delivery can be harmful to babies depending on gestational age and other factors. Late preterm delivery (from 35 weeks) may potentially cause harm to the baby. Some babies experience respiratory problems and/or admission to neonatal units etc., as well as long-term abnormal conditions resulting from early delivery. For in depth information on prematurity issues, please see the March of Dimes web site.
What should I know about Group B Strep?
Group B Streptococcus (GBS) is a bacteria naturally found in the digestive tract and birth canal of one in four pregnant women and for most it does no harm.
Although the focus of GBS disease prevention in babies has been during labor and delivery, GBS can infect babies during pregnancy causing babies to be miscarried or stillborn. This distinct time when babies can become infected by GBS is now known as "prenatal-onset" GBS (POGBS) disease. GBS can cross even intact membranes as well as cause preterm labor to start and membranes to rupture early.
Currently there are no official prevention strategies to prevent POGBS disease, but pregnant women can help protect their babies by:
- Seeing their provider promptly for any signs of vaginal infection. However, GBS causes almost always no symptoms in the mother.
- Requesting urine cultures or vaginal swab for GBS from the first trimester. This is not the urine test performed at most prenatal visits.
- Avoiding unnecessary cervical exams and other invasive procedures.
Group B Strep is usually treated in the following manner: A positive urine culture indicates heavy vaginal colonization so women should receive an oral antibiotic (a penicillin) at the time of diagnosis for one week, followed by reculture ("test of cure"). Then the patient may be considered group B strep positive for the entire pregnancy, i.e should be treated during labor. If GBS is detected during routine vaginal/rectal GBS screening at 35-37 weeks of pregnancy, women are usually treated with intravenous antibiotics during delivery to help protect the baby.
For more information as to how to help prevent GBS infections in babies before birth through early infancy, please visit www.groupbstrepinternational.org. For specific information on prenatal-onset GBS disease please view this article.
What should I know about HCMV?
Cytomegalovirus (CMV) is of the Herpes viruses group. It is commonly known as HCMV or Human Herpes virus 5 (HHV-5). HCMV is one of a cluster of infections referred to within the acronym TORCH that can lead to congenital abnormalities. These are: toxoplasmosis, rubella (measles), cytomegalovirus and herpes simplex. Congenital HCMV infection occurs when the mother suffers a primary infection (or reactivation) during pregnancy. HCMV infection without symptoms is common in infants and young children.
Transmission of HCMV occurs from person to person through bodily fluids that come in contact with hands and then are absorbed through the nose or mouth of the susceptible person. Frequently hand washing can help prevent the spread of HCMV. Although HCMV is not highly contagious, it has been shown to spread in households and among young children in day care centers. HCMV vaccines are still in the research and development stage but pregnant women can help protect their unborn babies by:
- Making sure to wash hands with soap and water since this is effective in removing the virus from the hands. Take special care to wash when handling children and items like diapers.
- Request screening for HCMV.
- If necessary, amniocentesis after 20 weeks gestation can be done to detect transmission to baby from the mother.
What can I do to protect my unborn baby?
At this time, there is no way to predict or prevent all stillbirths. But there are many things that pregnant mothers can do to help reduce the risk of stillbirth.
- Good prenatal care is important! Start seeing a doctor as soon as you think you might be pregnant. Keep all appointments and follow your doctor’s advice.
- Do not smoke, drink alcohol or use drugs except for those prescribed by your doctor
- Excessive amounts of caffeine may increase the risk of miscarriage and stillbirth
- In addition, there is recent research that shows that pregnant women who take anti-depressant drugs may be more likely to miscarry. However, based on recommendations contained in a 2009 Joint Report of the American Psychiatric Association and the American College of Obstetrics and Gynecology we do not suggest you stop taking anti-depressants. Talk with your doctor before discontinuing any medications.
- If you have diabetes or high blood pressure, work closely with your doctor to keep it under control
- Make sure to request urine cultures for Group B Strep and screening for other infections such as HCMV.
- Call your doctor right away if you have any vaginal bleeding, leakage or sharp pain.
- During your last trimester carefully monitor your baby’s movements. Get to know your baby’s personality and behavior so that you have a sense of when something is not right.
- If you are past your due date, talk with your doctor. Pregnancies longer than 41 weeks may be at greater risk for stillbirth.
What about counting my baby's kicks/movements?
Your baby moves many times a day. Your baby's movements are the best sign of his or her health. Kick Counting is viewed increasingly as an opportunity to participate in a proactive way, and receive reassurance that baby in-utero is active and developing on schedule.
Starting at week 28 (earlier for high-risk pregnancies) set aside time each day to count and keep track of your baby’s movements (kicks, twists, turns, swishes or rolls). This will help you know what the "normal" pattern for your baby is, so you can more easily notice any changes in the pattern of your baby's movements. Many experts agree that a change (decrease or sudden and violent hyperactivity) in your baby's normal movement pattern may be a signal there is a problem. Some mothers report a burst of hyperactivity shortly before movement slowed significantly or stopped. Little research has yet been done on this phenomenon. Get to know your baby's personality and behavior early on. Any change from that behavior may be reason for concern.
- Pick a quiet time in your day when your baby is usually most active.
- Sit with your feet up or lie on your side and start counting your baby's movements until you reach 10. It often takes most moms less than 15 minutes to count kicks in this way though it can take longer. Keep in mind that your baby will have sleep/wake patterns so you should chose a time of day when your baby is most active. Babies in the womb do not usually sleep for more than about 40 minutes.
- Consider using a kick count chart to note the length of time it takes to feel 10 kicks and to have a record to share with your doctor.
- If you notice a sudden change in your baby's kicks or movements, or you do not feel 10 movements within one hour during a time you usually feel movements, call your doctor immediately.
- If you continue to be concerned, do not hesitate to go to the ER/maternity ward or if allowed within your health care system, seek a second opinion right away.
A downloadable Kick Count Chart can be found on websites such as First Candle. There is some new technology, such as iPhone applications, that may be available to you to help keep track of kicks. Sprout [Pregnancy Essentials] is an application that will help you understand your baby's growth and development throughout your pregnancy, suggest questions you might want to ask your doctor, and includes several other useful tools such as a kick counter and contraction timer.
For more information about the role of fetal movement counting in reducing the risk of stillbirth, please read this document.
What is Stillbirth?
A simplified explanation of stillbirth in some countries (for example, Australia, New Zealand, or the U.S.) is the death of an unborn child who has been in the mother’s womb for 20 weeks or more. In other countries (as in Sweden) the definition may begin as late as 28 weeks. A baby who died earlier than 20 weeks may be called a miscarriage, but to some parents it is also a baby born too early and born still.
Stillbirth is a term describing a sad outcome, the death of a baby, and not a cause of death. Stillbirth cuts across all socio-economic classes, races, religions and maternal age groups. Sadly, no woman is immune.
Will parents get to spend time with their stillborn baby?
Parents and other family members are encouraged to spend as much personal time as possible with their baby saying a full "hello" before the rush to say "goodbye". Most hospitals strongly encourage parents to hold the baby and create special memories before they say goodbye. Throughout the world, most parents agree that they were either grateful they did this, though they found it to be difficult at first, or regret it if they did not.
In many communities, especially in the U.S. and Australia, there are professional or hospital photographers who offer their services to take photos that can be treasured in the years to come. There are a number of written resources that offer practical, step-by-step help in offering the options and guidance for good decision-making: Healing From the Start, National Share, or Stillbirth Alliance and the books Empty Arms or When Hello Means Goodbye. When parents understand the "why" and the long-term comfort that comes from minimizing their regrets, they are more able to experience their baby to the fullest.
It is very important that parents make decisions that are best for them, taking into account religious, cultural, and personal beliefs. There will be some parents who choose not to hold their baby or even see him or her. If they have been fully informed and asked a few times to do this, yet still say "no", it is important to support their decision.
Are autopsies important? If so, why?
If there are more autopsies on babies who are stillborn, it will help us to better understand and work towards preventing as many deaths as possible. At this point in time, autopsies provide a cause of death in approximately 40% of all stillborn deaths.
Finding a cause of death through autopsy may be important for those parents who are considering another pregnancy. However, it is sometimes difficult for parents to agree to this. It is the parents' choice in the end, unless there is a law mandating autopsy.
It is important to know that, parents can choose to have an autopsy performed with whatever limitations they wish. For example, some parents choose to have an autopsy on all tissues except for the brain; others may choose a "biopsy- only" autopsy, in which the organs are examined and sampled, but returned back to the body. Yet, another alternative to a full autopsy is one that is limited to an external examination. Though not as good as a full autopsy, tissue and blood samples and photos can be taken of the cord, placenta, and baby at time of delivery. Blood tests and examination of any ultrasounds, especially those taken after 20 weeks during pregnancy, may provide important information. When combined with a placental examination, all of this type of data can provide much helpful information.
In addition, in some areas, physicians will use MRI, as part of an "external examination-only" autopsy, in order to visualize organs without disturbing the body. It is most important to remember that a placental/cord examination is of utmost importance, and is often covered by insurance. The placenta (often called a "diary of intrauterine life") can reveal much about the cause of stillbirth. This may be especially helpful since problems with the cord and/or placenta appear to be common causes of pregnancy complications.
In some countries and areas, it is common to conduct a "verbal autopsy" or in other words, an extensive interview of the parents about the details of the pregnancy, especially prior to and around the time of the death. This can provide important information.
Even in the absence of a positive finding, the absence of specific reasons for the baby's death ("negative" findings) may help understand the risks for a subsequent pregnancy.
Knowing the cause of death may help you believe that there was nothing you could have done differently that would have prevented your baby’s death. Without an autopsy, you may wonder about it for years and this can hinder your progress through the grieving process. However, if you are one of the many parents who do not end up with a clear answer, you may still wonder and be frustrated. It is possible, however, that an answer will come some day with new research if you do have an autopsy report to refer to in the future.
Should parents have a funeral service for a stillborn baby?
Some countries and some states in the U.S. require that parents take responsibility for their child’s remains after a certain number of weeks, whether that is by burial or by cremation. Other hospitals from various regions or countries discourage this, offering to "help" by taking care of the baby’s remains themselves. Really, the right answer will be different for each family and community depending upon traditions, laws, and personal expectations.
Having a funeral or memorial service for a stillborn baby helps many families say goodbye and have a ritual to remember which can help with the healing process. This is the one common ceremony that affirms life and offers people a chance to comfort each other, especially the parents, at a difficult time. It can help make the baby real to others, which can lead to more family/community support. This is the one thing parents can do for their baby. Also, this gives the rest of the family, including other children, a chance to be involved with the baby. However, as long as you fully understand the pros and cons, you should choose what is right for you.
What should people say to a family who has had a stillborn baby?
Immediately following the stillbirth of their baby, families are often in a very intense grieving period. Everybody grieves differently, so remember to be patient. Saying things such as "I'm so sorry" or "I can't imagine what you're going through, but I promise to be here for you whenever you might need me" will let the family know that you care and that they can depend on you.
However, statements like "You can have another baby" or "It was God's will" may upset the parents during an already extremely difficult time. These kinds of statements belittle the child's life. Affirm this little life and remember that this baby is, and always will be, the parents' child.
Parents usually like to have friends and family mention the baby now and then and use the baby's name. They need to learn how to be the parent of this child forever, integrating this little life into their family in some way. Studies show that this will help them be a better parent to any subsequent children. Your help will be very important over time, especially during holidays and birthdays.
Many organizations offer detailed information and suggestions for families and friends.
Where can families find support?
There are many organizations with web-based support throughout the world. The following are English speaking unless otherwise noted.
Ciao Lapo Onlus (in Italian)
Grief Watch (also in Spanish)
Kapy (in Finnish)
Landsforeningen uventet barnedød (in Norwegian)
Naître et Vivre (in French)
SIDS Family Association Japan (in Japanese)
Spädbarnsfonden (in Swedish)
Uma Manita (in Spanish)
After an unborn baby has died, how is she/he delivered?
Most mothers who experience the death of their baby in utero may want to take some time (a few hours or a few days) before delivery to deal with the shocking news, prepare the family, prepare for the time in the hospital, and even prepare their body and mind for impending birth when it is not an emergency or birth is not imminent. Being told a baby has died throws parents into shock with an accompanying sense of loss of control. Preparation time appears to help parents gain back some control over the situation, the timing, and the decisions they are about to face. If your health care provider does not offer this opportunity to slow it down, but you wish to, you have this right.
As you weigh this decision, consider whether you wish to have an autopsy. If you do, be aware that most pathologists would suggest that they may have more success with microscopic examination of tissue and organs if the baby is born within a few days of death rather than many days later. According to pathologists, waiting too long before delivery might compromise some of the findings. Therefore, if you are planning to have an autopsy or placental examination, you may choose to deliver the baby sooner rather than later.
However, it is still encouraged and supported by research that spending some time with your baby after birth is helpful for long term healing. So don’t think that you have to send the baby to the lab too soon. Some pathologists encourage families to have their baby for a day or two prior to autopsy, as long is they keep the baby cool (a bag of ice beneath the bedding works well). Every case is individual and what the parents decide to do may be determined by their beliefs, the wider family, or the person(s) caring for them at the time.
Most mothers will be encouraged to deliver their baby vaginally, but C-sections are not uncommon. A vaginal birth is less risky for mothers since surgery always poses a higher health risk. Vaginal birth takes less time for physical healing, and is better for subsequent pregnancies. The time it takes to vaginally deliver a baby can vary widely so consult with your doctor about what to expect.
Pain control options and supportive family members and birth assistants may help ease the overwhelming emotional and physical pain of stillbirth. Many providers have had some training in helping parents deliver a stillborn baby and will help parents make decisions about meeting their baby who has died.
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