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FAQs

Have a question you want answered?  Submit your question below or email [email protected] and we will contact our panel of medical experts to respond.  

In the United States, stillbirth is most commonly defined as the death of a baby after 20 weeks gestation but before taking a first breath. It is a description of when a baby dies more than how or why a baby dies.

Neonatal death refers to the death of a baby in the first 28 days of life.

In the United States, 26,000 babies are stillborn every year. One out of every 150 deliveries ends in stillbirth. Thousands more are miscarried or die shortly after birth. More babies are stillborn every year in the United States than die from prematurity and SIDS combined.

Around the world, it is estimated that nearly 3 million babies are stillborn each year. The definition and record-keeping varies from country to country, making it hard to know for sure.

Star Legacy Foundation conducts work within its 5 mission pillars – all focused on preventing poor pregnancy outcomes and supporting families when prevention isn’t possible.

We support RESEARCH through projects like the Pregnancy Research Registry, the STARS Study, Family Needs Assessment Study, and more.

We provide EDUCATION through the Stillbirth Summit, health professional retreats, patient education materials, inservices and seminars, and online education.

We encourage AWARENESS with Champion Events, social media, community presentations, and all of our projects.

We promote ADVOCACY by supporting policies that support families and prevention of poor pregnancy outcomes.

We provide FAMILY SUPPORT with peer companions, national support line, support groups in local communities, care packages/clothing/linens for babies and families, and offer connections to experts and researchers.

There are several options – and we also welcome your suggestions.

  • Add your baby’s name to our list of Our Stars
  • Share your written or video story
  • Request a memorial page that can be designed to include your story, photos, or anything else you want to share about your baby and your experience
  • Participate in a Champion Event. Many events offer opportunities to share your baby by adding his/her name to the event shirt or other ways specific to each event and location. Many events also allow you to create a team in honor of your baby so you can use it to bring together your family and friends and remember your precious child.
  • Make a donation or suggest donations in memory of your baby.
  • Allow them to share their story and honor their baby.
  • Say their baby’s name. If you are able to see the baby or photos, comment as you would for any other baby.
  • If they have a memorial service or similar ceremony, attend if you are invited and able.
  • Recognize that each person grieves differently. As long as they are not a danger to themselves or others, there is no right or wrong way to grieve.
  • Avoid platitudes and clichés. Instead, validate their emotions and acknowledge that this can’t be easily accepted or explained.
  • Assist with daily tasks that may require more energy than they have or puts them in difficult situations. For example, offer to pick children up at school, get groceries, clean the house, etc.
  • Give them time. Grief does not have an expiration date and is very unpredictable.
  • Remember them and their baby on special dates and occasions – the baby’s due date, holidays, Mother’s Day and Father’s Day, the baby’s birth/death anniversary, etc. These dates will be bittersweet for them for many, many years.
  • Provide resources such as our Support Line, local counselors, a spiritual leader, or other trusted professional. Offer to connect them to a peer companion – someone who has had a similar experience and is trained to help others. If you don’t know someone, contact us and we will. There is tremendous power and hope in talking to someone who has been in their shoes and survived.
  • Participate with them in activities that honor their baby. Each family may have a unique and special way of remembering their baby. For example, they have a team at a walk for pregnancy and infant loss, or they ask for random acts of kindness on their baby’s birthday, or they may light a candle on special dates.
  • Take care of yourself, too. Grandparents, aunts, uncles, cousins, friends – everyone who was eagerly anticipating this baby is grieving. Even those who didn’t know about the pregnancy will grieve the sadness that their loved one is experiencing. Our support line is open to all who are affected by this loss. We also have peer companions for grandparents, aunts/uncles, and friends.
  • View our brochure on How to Help

We are grateful for any and all donations and feel great responsibility in using them wisely and judiciously. In 2015, 98% of our donations were used directly on our projects. Donors may also indicate which project they would like to support.

We would be honored to have you join our efforts!  Some ways to become involved include:

  • Attend a Champion Event either in person or virtually
  • Participate in the Pregnancy Research Registry
  • Tell others about our efforts and how they might help
  • Become involved in a local chapter or contact us about starting a chapter if one doesn’t currently exist in your area.
  • Become a trained peer companion to help future families on their grief journey
  • Donate material and other supplies that can be made into keepsakes, blankets, burial gowns, and other special mementos for families. Yes – we accept wedding dresses!
  • Host a Champion Event in your community
  • Tell your health professionals about our research and education programs
  • Offer your unique talents or skills
  • Visit our Volunteer page to learn about current volunteer opportunities and needs.
  • Contact us with your suggestions or ideas! We are always open to new opportunities!

Absolutely! The Stillbirth Summit is designed for learning and partnerships between researchers, health professionals, family advocates, and individuals affected by pregnancy and infant loss. Learn more

Throughout the US:

  • Support line

Alabama

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Arizona

  • Angels, Asana, and Ale

California

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Colorado

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Connecticut

  • Ride for Jace
  • Legislative advocacy

Florida

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Illinois

  • Grace & Kylee’s Angel Run

Kentucky

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Maryland

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Maine

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Massachusetts

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Michigan

  • Addyson’s Angel Run
  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Minnesota

  • Peer companioning
  • Support groups – bereaved parents
  • Support groups – grandparents and extended family
  • Support groups – pregnancy after a loss
  • Support line
  • Health professional retreats
  • Let’s Not Be Still! Run/Walk for Pregnancy and Infant Loss Awareness
  • Mary-Alice and Friends 5K
  • Legislative advocacy
  • Stillbirth Summit

Nebraska

  • Let’s Not Be Still! Omaha
  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area
  • Shooting for the Stars

New Hampshire

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

New Jersey

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

New York

  • New York Metro Chapter
  • Health professional retreats
  • Support Groups coming soon
  • Peer companioning coming soon
  • Legislative advocacy
  • Let’s Not Be Still! New York
  • Walk to Remember

Ohio

  • Lydie’s Loop: Steps Against Stillbirth
  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Pennsylvania

  • Taylor Morgan Hamilton 5K Walk For Stillbirth Awareness

Texas

  • Zayne’s Anchor of Hope Day
  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

Virginia

  • Health professional retreats
  • Legislative advocacy

Wisconsin

  • Abby’s Ride
  • Abby’s Run
  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area
  • Legislative advocacy

Wyoming

  • Chapter forming – contact us if you’d like to be involved in bringing more activities to your area

We would be honored to help your loved one in any way we can. Please contact us at [email protected] or 952-715-7731.

This is the most commonly asked question we hear. And we said it ourselves when we began this journey. Changing this lack of awareness is one of our primary goals.

There are many reasons for the lack of awareness. Our society is not very good at talking about death – especially the death of babies. Limited research, few answers, and a lack of communication all complicate it further. For a further discussion on this topic, view our blogpost.

Before pregnancy, visit your health professional to ensure you are a healthy weight and have control of any medical concerns.

Don’t  smoke, drink alcohol, or use other drugs.

Obtain regular prenatal care.

Monitor your baby’s activity and report ANY changes immediately.

Avoid sleeping on your back.

Know your risk factors.  If you have any of the following risk factors, ask your OB about a high-risk protocol that may include more frequent ultrasounds, non-stress tests, and diligent monitoring of baby’s activity.

  • Maternal obesity
  • History of a previous poor pregnancy outcome (stillbirth, neonatal death, premature birth, etc)
  • First pregnancy
  • Pregnancy conceived using reproductive therapies
  • Multiple gestation pregnancy (twins, triplets, or more)
  • African American or Native American mother
  • Advanced maternal age (mom 35 years old or more)
  • Gestational Diabetes
  • High blood pressure, pre-eclampsia, or eclampsia
  • Maternal health conditions such as lupus, kidney disorders, thyroid disease, and others)
  • Genetic or anatomical abnormalities in baby
  • Abnormal placement/attachment of umbilical cord and/or placenta
  • Too much or too little amniotic fluid
  • Increase or decrease in baby’s activity
  • Poor access to care
  • Lower socioeconomic status
  • Pregnancies beyond 40 weeks gestation

We do not know all the answers about which pregnancies are susceptible to stillbirth or not.  However, the following characteristics have been associated with higher rates of stillbirth.  If you are pregnant and have one or more of these risk factors, discuss with your doctor a high-risk protocol that may include more frequent visits, additional ultrasounds, non-stress tests, and diligent monitoring of baby’s movement.

  • Maternal obesity
  • History of a previous poor pregnancy outcome (stillbirth, neonatal death, premature birth, etc)
  • First pregnancy
  • Use of alcohol, tobacco, or other drugs
  • Pregnancy conceived using reproductive therapies
  • Multiple gestation pregnancy (twins, triplets, or more)
  • African American or Native American mother
  • Advanced maternal age (mom 35 years old or more)
  • Gestational Diabetes
  • High blood pressure, pre-eclampsia, or eclampsia
  • Maternal health conditions such as lupus, kidney disorders, thyroid disease, and others)
  • Genetic or anatomical abnormalities in baby
  • Abnormal placement/attachment of umbilical cord and/or placenta
  • Too much or too little amniotic fluid
  • Poor growth in baby (fetal growth restriction)
  • Increase or decrease in baby’s activity
  • Poor access to care
  • Lower socioeconomic status
  • Pregnancies beyond 40 weeks gestation

Choose a time each day when your baby is often very active. Lie down or sit quietly and tune into your baby’s movements. Note the time it takes for him/her to make 10 movements. This includes kicks, rolls, swooshes, jabs, or flutters – but not hiccups. Record this time on your kick counting chart. Also note any characteristics of the movements. If the time or characteristics are different from usual or changes suddenly, you and your baby should be evaluated immediately. Again, trust your instincts! Do not wait until the next day or your next appointment to report these changes. If your baby is in trouble, time may be critical. Take your charts to all obstetrics visits to share with your healthcare provider.

First – it’s fun! Getting to know your baby is one of the most magical parts of being pregnant! ONLY YOU get to have this amazing experience to know your child before he/she is born! This is a great privilege, but also a great responsibility.
Second – some conditions mentioned in this brochure may increase the risk of adverse pregnancy outcomes including premature labor and delivery, birth injury, and stillbirth. Having as much information about you, your baby, and your baby’s environment as possible allows you and your healthcare team to make the best decisions to improve chances of your baby’s healthy arrival.

Finally – we believe the mother knows her baby best! Mom’s intuition and concerns about unusual symptoms should play a significant role in the care of any pregnancy.

A lack of answers makes the death of a baby so much harder. Unfortunately, nearly 2/3 of all stillborn babies die for reasons we don’t understand. If you have questions about your experience, please contact us and we may be able to connect you with an expert or researcher who can help or offer another opinion.

Make a list of questions to take with you. It is very easy to forget some once you are there.
Ask if there are any concerns about your body and how it is healing physically.

If you did an autopsy or any other testing, ask your provider to tell you about each test result and what it means.

Ask if there are any additional tests your provider would recommend to do now or before another pregnancy

If you’re given a reason for your baby’s death, ask any questions about what caused it, when it happened, how likely it is to happen in a future pregnancy, what might have been done to prevent it or prevent it from being fatal

If you have any questions about your delivery or hospitalization, this is a good time to ask.

If you are thinking about another pregnancy, you can ask if your provider has any concerns about how soon you should begin trying to conceive again and if there are any tests or medical conditions that should be addressed before another pregnancy. You can also ask what would be done differently in your next pregnancy or how the provider would approach your prenatal care to address your history and anxiety.

If desired, you can ask for a referral to a mental health professional or support group or counselor that specializes in perinatal loss.

Star Legacy Foundation encourages testing to identify why a baby has died.  This may include a full autopsy, but there are other options if an autopsy is not an option for cultural, financial, or personal reasons.

In general, some benefits of investigating a stillbirth include

  • increasing the chances of having an answer about why the baby died
  • ruling out potential causes that were not a factor in the baby’s death
  • knowing if there are things that can/should be done different in a future pregnancy or if the cause of death is something that is likely to recur in another pregnancy

Additionally, many families recognize a benefit to public health by gathering information about their baby that could help researchers and health professionals learn more about preventing future deaths.

Common concerns and considerations include:

  • cost: most insurance companies will cover the cost of testing on the placenta and umbilical cord, but not an autopsy or other tests on the baby.  Check with your insurance to determine coverage available under your policy.  You can ask the hospital how much the tests will cost before agreeing to them.  There are also some wonderful organizations that provide financial assistance to cover medical and burial/cremation costs.
  • Timing: many cultures require a burial during a certain time period. In most cases, pathologists and other health professionals will try very hard to respect these desires and can tell you in advance if they can complete the testing in a timeframe that meet your needs.

There are also many myths or concerns about if doing these tests will limit how much time the family can spend with the baby.  There is no specific time that tests have to be completed.  The family can spend as much time with their baby as they would like and testing can be completed when they are ready.  Additionally, it is acceptable for the family to spend time with the baby again after testing is finished.

  • Appearance of baby: there are also myths about if families may have an open casket after an autopsy or other testing.  Families will be able to see their baby after testing if desired and an open casket is possible.  If this is important to you, have the physician or nurse communicate this to the pathologist who will be especially mindful of your wishes.
  • Amount of tissue taken: very little tissue is removed from the baby’s body during an autopsy. In most cases, any tissue samples will be small enough to fit under a microscope slide.
  • Invasiveness: many families are concerned about the invasive nature of an autopsy. This is understandable.  You can ask questions of your physician about this, or you can also agree to only portions.  For example, some families will allow autopsy of major organs except the brain.  Or it may be limited to organs that your physician is particularly concerned about.

As an alternative, some facilities are offering MRI imaging to look at the internal organs of a baby without the invasive procedure.  If this would be more desirable, ask your physician

about the possibility at your facility and the anticipated cost.

This is NOT true. There are many situations where the placenta is evaluated without an autopsy – including cases where the baby is living but is ill or having complications. A placental examination is recommended for a long list of conditions, including stillbirth, prematurity, NICU admission, small for gestational age, growth restriction, maternal diabetes, placenta abnormalities or abruption, pre-eclampsia, maternal fever, infection, umbilical cord abnormalities, low APGAR scores in baby, and many more.
The attached articles are two examples of studies that demonstrate how testing after a stillbirth (or any poor pregnancy outcome) is a flexible menu of options. Unfortunately, it is often presented to families as ‘all or none’. The most common options that families can choose from are placental examination, blood tests, genetic testing, imaging (CT or MRI), partial autopsies, or full autopsies.

These attached articles (Scalise (2022) Importance of Post-Mortem investigations in stillbirths, Odendaal (2022) Key role of examining the placenta in establishing a probable cause for stillbirth) are two examples of studies that demonstrate how testing after a stillbirth (or any poor pregnancy outcome) is a flexible menu of options. Unfortunately, it is often presented to families as ‘all or none’. The most common options that families can choose from are placental examination, blood tests, genetic testing, imaging (CT or MRI), partial autopsies, or full autopsies.

Your obstetrician will have tests he/she feels are important based on your situation.  In general, the following tests are often done after a stillbirth and may provide some information about what did or did not cause your baby’s death.

  • If you have not yet delivered your baby, an ultrasound may provide information about the amount of amniotic fluid and position of the placenta and umbilical cord.
  • Urine culture
  • Placental culture
  • Vaginal culture
  • Kleihauer-Betke
  • ANA
  • Lupus anticoagulant
  • Antibody screen
  • Anticardiolipin antibodies
  • Chromosomal analysis
  • Hemoglobin A1C
  • Thyroid function tests
  • Complete blood count
  • TORCH titers
  • RPR/syphilis
  • Parvovirus
  • Chlamydia
  • Gonorrhea
  • Group B strep
  • Chemistry panel
  • BUN
  • Creatinine
  • Liver function tests
  • Bile acids
  • Length of cord
  • Size and weight of placenta
  • Knots, abnormal twisting, abnormalities in cord
  • External physical examination of the baby
  • Autopsy of baby
  • Fetal cultures
  • Fetal CRP
  • Cord blood CBC
  • Cord blood microbiology
  • Newborn metabolic screen
  • XR or MRI

This is a very personal question that is different for every family.

First, ask your health provider if there are any physical or medical concerns that should be resolved or addressed before another pregnancy.

Emotional health is harder to measure.  Research into what timing for a next pregnancy is best for emotional health has not found conclusive answers.  There are many opinions, but it ultimately depends on your family and what feels best for you.

Some things to consider:

  • You will always miss this baby.
  • Another new baby (or many more new babies) will not replace this baby
  • Some families find it best to avoid a pregnancy during the same time of year, while others find it comforting.
  • If you have questions or concerns about what your care will look like in another pregnancy, it can be helpful to ask those questions of your health provider or potential health providers before you are pregnant. It can be even more stressful to find a provider that has an approach you want if you are already many weeks into the next pregnancy
  • Fertility can change after pregnancy. Some families will continue to struggle with infertility after a loss, but some will not.  Some families who did not have trouble conceiving before loss will now experience infertility issues.

Our support line is open to you and your loved ones. 952-715-7731, ext 1. If you have other questions or concerns, please contact us and we will do our best to connect you with an appropriate person to help.

Unfortunately, having one baby die doesn’t protect us from experiencing a similar heartache in the future. The odds of another loss rely primarily on the cause of your baby’s death. Your health provider may be able to tell you if it was related to your health, genetics, or other potentially repeatable causes. If these conditions are not present, or you don’t know why your baby died, it is harder to predict if your next pregnancy will end as we hope.
Studies have shown that women who have had a previous poor pregnancy outcome are at risk for other poor outcomes in future pregnancies. We don’t know why this occurs in most cases. Most obstetricians will utilize a high-risk protocol for women with a history of previous poor outcome. The high-risk protocol has been shown to reduce the rate of stillbirth significantly. You will also want to monitor your baby and pregnancy closely and report any changes to your providers immediately.

Many women will stay with the same provider in subsequent pregnancies, but many change.

Change may be due to the need to see an obstetrician or perinatologist/maternal-fetal medicine specialists instead of midwife or family practice physician. It may also be due to a family’s move or change in insurance. Some families change because they want/need to deliver at another facility that offers specific services, and their previous provider may not practice at the needed hospital/location. Some families change because they had a bad experience and place some blame on their provider. Other families change simply because returning to the same location and provider brings back memories and is too difficult emotionally. Finally, some families change because they want care that their previous provider is not willing or able to provide.

Many families also choose to stay with their provider. It can be comforting to know that this person and staff know your history and possibly knew and met your baby. If your providers were warm, caring, and comforting, that can be a wonderful environment for your next pregnancy. Some families (particularly those in rural areas) may not have other options for health providers.

In general, go where you feel the most comfortable and peaceful and with a provider that will partner with you to meet your needs during the next pregnancy.

Parents will often have many questions entering a new pregnancy after a loss. Don’t hesitate to ask all of your questions, and ask them several times if you are unclear about the answers.

  • If there are any remaining questions about your health or what caused your baby’s death, ask them now.
  • What will be done the same or differently during this pregnancy compared to the previous pregnancy?
  • What should I do if I am concerned or anxious about my baby’s health?

Many families will have specific things they would like to do or not do during a subsequent pregnancy. These may include genetic testing, ultrasounds and biophysical profiles, non-stress tests, urine cultures, induction, type or timing of delivery, and more. Discuss these all with your provider early and have a plan that everyone can agree on and feel comfortable with.

Blood clots in the umbilical cord can form either quickly or slowly.  For example, it could be very fast if the baby has a clotting disorder or is otherwise prone to forming clots.  However, they could develop slowly in cases of chronic, intermittent cord occlusion or other causes of poor circulation. 

After delivery, these clots can be seen directly, or there may be signs they were present such as calcified vessels.  Before delivery, the clots are not usually visible unless they have started to change the blood flow through the vessels, which can be seen and measured with some ultrasound tests.

Thank you to Dr. Mana Parast and Professor Alexander Heazell for answering this question!

There are many reports in the literature of families experiencing infertility after a previous stillbirth.  Many things can cause this infertility; unfortunately, many situations do not have a known cause.  Occasionally, there can be a connection to the previous stillbirth if there are maternal health factors that impacted the previous pregnancy and continue to impact the mother’s health status.  There are also reports of complications from the previous pregnancy and delivery contributing to infertility, such as infection, uterine scarring, or retained placenta/tissue.  Some reports indicate that mental health concerns such as depression, anxiety, and extreme stress resulting from the stillbirth may play a role. However, there is some debate about if these conditions are causing infertility or are caused/exacerbated by infertility. 

Infertility after a pregnancy loss is more common than many people think.  However, a direct cause between the two has not been identified. 

Benksim, A., Elkhoudri, N., Ait Addi, R., Baali, A., & Cherkaoui, M. (2018). Difference between Primary and Secondary Infertility in Morocco: Frequencies and Associated Factors. International Journal of Fertility and Sterility, 12(2). https://doi.org/10.22074/ijfs.2018.5188

The short answer is YES! 

Many studies show that women who have had a stillbirth are at a higher risk of poor outcomes in future pregnancies.  The specific levels of risk will depend on many factors, such as the baby’s cause of death (if known), your health in that pregnancy and now, and the presence of other risk factors. 

The American College of Obstetricians & Gynecologists recommends increased testing and monitoring for anyone with a history of stillbirth.  The specific recommendations can be found in the papers below.  These are based on the United States’ definition of stillbirth – which is 20 weeks of gestation or greater. 

Fortunately, there is growing evidence that these high-risk approaches to subsequent pregnancies can help reduce the recurrence of stillbirth!   Studies also show that increased testing and monitoring, along with compassionate emotional care, can improve the psychosocial and mental health experience of parents during these pregnancies.  Talk to your doctor or midwife about your pregnancy specifically to identify a care plan that is comfortable to you. 

 

References:

Gordon, A., Raynes-Greenow, C., McGeechan, K., Morris, J., & Jeffery, H. (2012). Stillbirth Risk in a Second Pregnancy: Obstetrics & Gynecology, 119(3), 509–517. https://doi.org/10.1097/AOG.0b013e31824781f8

Heazell, A. E. P., Wojcieszek, A., Graham, N., & Stephens, L. (2019). Care in pregnancies after stillbirth and neonatal death. International Journal of Birth and Parent Education, 6(2), 23–28.

Indications for Outpatient Antenatal Fetal Surveillance: ACOG Committee Opinion, Number 828. (2021). Obstetrics & Gynecology, 137(6), e177–e197. https://doi.org/10.1097/AOG.0000000000004407

Ladhani, N. N. N., Fockler, M. E., Stephens, L., Barrett, J. F. R., & Heazell, A. E. P. (2018). No. 369-Management of Pregnancy Subsequent to Stillbirth. Journal of Obstetrics and Gynaecology Canada, 40(12), 1669–1683. https://doi.org/10.1016/j.jogc.2018.07.002

Management of Stillbirth: Obstetric Care Consensus No, 10. (2020). Obstetrics & Gynecology, 135(3), e110–e132. https://doi.org/10.1097/AOG.0000000000003719

Metz, T. D., Berry, R. S., Fretts, R. C., Reddy, U. M., & Turrentine, M. A. (2020). Obstetric Care Consensus #10: Management of Stillbirth. American Journal of Obstetrics and Gynecology, 222(3), B2–B20. https://doi.org/10.1016/j.ajog.2020.01.017

Mills, T., Ricklesford, C., Cooke, A., Heazell, A., Whitworth, M., & Lavender, T. (2014). Parents’ experiences and expectations of care in pregnancy after stillbirth or neonatal death: A metasynthesis. BJOG: An International Journal of Obstetrics & Gynaecology, 121(8), 943–950. https://doi.org/10.1111/1471-0528.12656

O’Leary, J., Parker, L., Murphy, M. M., & Warland, J. (2021). Different baby, different story: Pregnancy and parenting after loss. Rowman & Littlefield.

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