Warning: This article will contain information that may be triggering to some people. If you are currently pregnant, please proceed with caution.
Baby loss and bereavement care...Not the thing you wish to read about, let along experience it. However, sadly it is part of life and people should be aware of this because through knowledge comes change and change is exactly what we need with such matters.
Pregnancy loss is still a taboo subject all across the world and many parents still do not receive appropriate and respectful care when their baby dies during pregnancy or childbirth. According to WHO, there is a miscarriage rate of 10-15% in women who knew they were pregnant. Additionally, every year nearly 2 million babies are stillborn. The numbers speak for themselves. It is not acceptable for us not to talk about such topics and for them to still be considered "taboo".
This article was written after a small research was done on this topic (14 women of different ages), with a questionnaire that was available for parents with such experiences to fill it and share their knowledge and thoughts with us. The intention behind this was to get some information that is not written in the literature, to learn more about how it actually feels and these people dealt with this. I want to thank everyone who helped me with their experience, even on a deeply upsetting matter like baby loss and bereavement care.
With that being said, I hope that you will learn a lot about pregnancy loss, what to expect and how to care for yourself if you ever experience a similar situation. Of course, this information is general and will not apply to everyone, but we hope that their stories can help you even a little bit with the rough road of pushing through the pain.
The "Being A Midwife" Team and our contact lines are always here to support and help you in any way that we can. Don't hesitate to reach out for help if you need it. You are not alone. You are not the only one with these feelings and you have to know that, it is important. You and your thoughts are valid.
Disclaimer: Midwifery is a very inclusive and safe space for everyone, where your identity and your needs are valid and important to us. Thus, the terms used in this article aim towards making everyone feel comfortable and included.
Uterus owner (person with a uterus, uterus having person) <--> Woman
Parent <--> father (dad), mother (mom)
Birthing person <--> mother (mom)
Pregnant (pregnant person) <--> mother (mom)
Breastfeeding (Breast) <--> Chestfeeding (Chest)
[if you feel that you are not included at any point, please contact us and help us change that]
© NIKOLETA CHATZIPANAGIOTIDOU, SOME RIGHTS RESERVED 01/03/2021
What is Pregnancy Loss?
According to Stanford Children's Health, Pregnancy loss is the death of an unborn baby (fetus) at any time during pregnancy. Most pregnancy losses happen during the first trimester. This is often so early that the pregnant person doesn’t even know they are pregnant. Pregnancy loss includes:
Early pregnancy loss (EPL)
*Occurs up to 12+6 weeks from the last menstrual period.
*Early pregnancy loss is common, occurring in 10% of all clinically recognized pregnancies. Approximately 80% of all cases of pregnancy loss occur within the first trimester (ACOG,2018)
-Embryonic pregnancy: The egg is fertilized, but it never develops into an embryo.
-Miscarriage: The loss occurs before the 13 weeks of pregnancy (also called spontaneous abortion).
-Ectopic pregnancy: The fetus develops outside the uterus (in a fallopian tube, the cervix, the pelvis or abdomen).
-Molar pregnancy: The placenta and fetal tissues do not develop normally.
Early second-trimester pregnancy loss
*Occurs after 13+0 and before 20+0 weeks of gestation
*Pregnancy loss during the second trimester is rare and often is not distinguished from first-trimester pregnancy loss.
Stillbirth
*Occurs at 20 weeks gestation or later, or at a weight of 350 grams or greater, is generally referred to as a stillbirth or fetal death, although differing criteria exist globally.
*Stillbirth affects about 1 in 160 births, and each year about 24,000 babies are stillborn in the United States. (CDC, 2019)
Pregnancy loss also includes the loss of the fetus due to medical reasons (TFMR: Termination For Medical Reasons). In England and Wales, about 2,700 abortions for fetal anomaly are recorded each year. (BPAS) The conversation surrounding TFMR baby loss is still incredibly limited, causing many parents to feel ashamed and guilty after their experiences, which is unacceptable. Their loss is valid as are their reasons for terminating the pregnancy.
Overall, about 10 to 20 percent of all recognized pregnancies and 30 to 40 percent of all conceptions end in pregnancy loss. (AFFP, 2007)
In our research the results showed that, even with such a small sample of 14 people, most of the losses indeed occurred in the 1st trimester.
What are the risk factors of Pregnancy Loss?
The most common risk factors for pregnancy loss are:
increased age (>35, the risk for pregnancy loss increases as the parent ages)
medical conditions* (e.i. chronic diseases)
medication and/or substance use
environmental exposures
prior pregnancy losses
* Chronic diseases, such as high blood pressure, diabetes, thyroid disease, or polycystic ovary syndrome (PCOS)
Problems with the immune system
Infections (such as untreated gonorrhea or Zika)
Hormone problems
Extremes in weight, such as obesity or being too thin
Lifestyle factors, such as using drugs or alcohol, smoking or consuming more than 200 milligrams of caffeine per day.
What are the causes of Baby Loss?
About half of early pregnancy losses are caused by problems with genes or chromosomes. However, more factors can affect the outcome of a pregnancy. Usually, it is not caused by anything the mother did. Causes of pregnancy loss include:
Abnormal embryo development
Hormone problems in the mother. These include low levels of progesterone or a thyroid problem.
High blood pressure or diabetes in the pregnant person.
Problems in the uterus. These include scar tissue inside the uterus, abnormally shaped uterus, or fibroids.
Opening of the uterus cannot stay closed during pregnancy (incompetent cervix)
Infection from germs. These include cytomegalovirus (CMV), mycoplasma, chlamydia, ureaplasma, listeria and toxoplasma.
Autoimmune diseases such as lupus. These cause the body to make antibodies against its own normal tissues. Other autoimmune problems include antiphospholipid antibody syndrome.
Injury or trauma
Exposure to toxic substances and chemicals, such as anticancer medicines
(When pregnancy loss happens 3 or more times, it is called "recurrent pregnancy loss". It is often hard to find a cause for recurrent losses and these couples need to do more in-depth testing.)
Other causes that were mentioned in the questionnaire include infections from GBS (Group B Streptococcus), mistreated UTI's (urinary tract infection) and PROM (premature rupture of membranes) resulting in neonatal death, and also many causes are still sadly unknown, leaving the parents with a lot of unanswered questions as to "why".
What are the symptoms of a miscarriage?
This is the question that many parents-to-be have when it comes to miscarriage and sadly the symptoms are not specific and there are many other reasons for happening that are not a miscarriage. Some of the most well-known ones are the following:
Bleeding: Bleeding can vary from light spotting or brownish discharge to heavy bleeding and bright red blood. It might come and go over several days. Some other causes may be implantation, cervical changes and ectopic pregnancy.
Stomach pain: Sharp abdominal or one-sided pain or pain in your shoulders, and/or pain when you use the toilet should be checked immediately, especially if you have bleeding or spotting as well as pain. Some other causes may be an upset tummy, constipation, recent implantation and because your womb is stretching and growing.
The sudden disappearance of pregnancy symptoms: The sudden disappearance of pregnancy symptoms like nausea or cravings can also sometimes be a sign of miscarriage. But that is not always the case.
In general, if you have any of these symptoms you should contact your doctor in order for them to be aware of the situation and give you the correct examinations and scans to make sure that everything is okay. Miscarriage is usually diagnosed or confirmed with an ultrasound scan.
Bereavement care: what is it?
Bereavement counselling, according to Collins English Dictionary, is the provision of advice for bereaved people to help them cope with their grief, sometimes given by charities and support groups.
Healthcare providers can seriously affect a couple going through a difficult time like pregnancy loss, either positively or negatively. It is of an extreme importance that, as health care professionals, we provide them with high-quality care and give them all the information we know about their loss (why, how, what happened, will it happen again, etc). This approach will not make their pain go away, but it can help give them closure and make them process their grief better. We also have to be able to provide them with enough information about support groups in the area that they are located as well as online options for them to go and find people who are going through a similar situation and also for them to find support mentally.
High-quality bereavement care involves:
A recognition of parenthood
Sensitive and effective communication
Enabling informed choice
Grief & trauma awareness
Support for staff
(for those interested in supporting and communicating with families experiencing a perinatal loss, check this out: https://www.cps.ca/en/documents/position/perinatal-loss )
Coping mechanisms for the loss
The pain that each person experiences during such times differs from one to another and is very personal, thus it is not possible to provide you with exact guidelines as to how to deal with pain and grief. We understand that the grief after losing a baby can cause overwhelming, possibly frightening, emotional and physical reactions and you may feel life will never be normal again. Learning more about how others experienced this process may help. We made an effort to get some suggestions for you from other parents that had gone through baby loss in hopes that you can get a few ideas. It is not necessary to do any of these, or you can try all of them; these are just some things that helped others in a similar situation and it's totally up to you.
Lots of walks, painting, writing poetry
Music (creating it or listening to music)
Talking with other people in a similar situation and helping each other
Talking with the partner, the family, a specialist, etc.
Shifting the focus on taking care of the other children of the family while still keeping your angel baby in your heart forever
Praying and using the help of God
Crying to release all the emotions
Finding the right support network
Planning the funeral, visiting the grave while decorating and changing it - this was one way of still being their parent. Also attended SANDS meetings (or other organisations)
Conclusion
Pregnancy loss is one of the hardest times in a couple's life. It is scary, exhausting, devastating and so much more. It will affect the parents on a personal level and it will also affect the dynamic of the relationship/partnership. However, you need to know that your thoughts and emotions are valid, even if they are completely different from everyone else's. No two people feel grief the same way and that is the reason that not all solutions work the same on everyone. You are not alone and there are people who can help you get through this and make it a little easier for you; all you gave to do is reach out to them. There is no shame in asking for help! It can only make you stronger.
This is the first article of the "Baby Loss & Bereavement Care" with which we aim in giving you a general overview of this daunting matter of Pregnancy Loss that so many people refuse to talk about. In the following article, we will get more in-depth into the different types of Pregnancy Loss and, amongst others, we will share with you the 2 questions that we believe were the most important on the questionnaire that the parents filled; "What do you wish you knew beforehand?" and "Do you have any advice you would like to share with other parents going through a similar situation?".
We really hope this article informed you and helped you with understanding this difficult topic. We strongly encourage you to contact us in whatever way suits you and discuss the article, suggest ideas for upcoming content, tell us your strong and emotional stories or for any other reason you would like.
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Thank you for your support!
Co-Founder and Co-Writer
The “Being a Midwife” team
Reference list ACOG. (2018). Early Pregnancy Loss. [online] Available at: https://www.acog.org/clinical/clinical-guidance/practice-bulletin/articles/2018/11/early-pregnancy-loss. Canadian Paediatric Society (2019). Supporting and communicating with families experiencing a perinatal loss | Canadian Paediatric Society. [online] Www.cps.ca. Available at: https://www.cps.ca/en/documents/position/perinatal-loss. CDC (2019). What is Stillbirth? [online] Centers for Disease Control and Prevention. Available at: https://www.cdc.gov/ncbddd/stillbirth/facts.html. https://www.nichd.nih.gov/. (2017). What Are the Causes of and Risks for Pregnancy Loss (Before 20 Weeks of Pregnancy)? [online] Available at: https://www.nichd.nih.gov/health/topics/pregnancyloss/conditioninfo/causes. Michels, T.C. and Tiu, A.Y. (2007). Second Trimester Pregnancy Loss. American Family Physician, [online] 76(9), pp.1341–1346. Available at: https://www.aafp.org/afp/2007/1101/p1341.html. nbcpathway.org.uk. (n.d.). NBCP Standards | National Bereavement Care Pathway (NBCP). [online] Available at: https://nbcpathway.org.uk/nbcp-standards. Prager, S., Micks, E. and Dalton, V.K. (2020). Pregnancy loss (miscarriage): Risk factors, etiology, clinical manifestations, and diagnostic evaluation. [online] Uptodate.com. Available at: https://www.uptodate.com/contents/pregnancy-loss-miscarriage-risk-factors-etiology-clinical-manifestations-and-diagnostic-evaluation. Sands - Stillbirth and neonatal death charity. (2016). Bereavement Care. [online] Available at: https://www.sands.org.uk/professionals/bereavement-care [Accessed 28 Feb. 2021]. Stanford Children’s Health (2019). Overview of Pregnancy Loss. [online] Stanfordchildrens.org. Available at: https://www.stanfordchildrens.org/en/topic/default?id=overview-of-pregnancy-loss-90-P02466. Tommy's (n.d.). Baby loss information and support. [online] www.tommys.org. Available at: https://www.tommys.org/baby-loss-support [Accessed 28 Feb. 2021]. Trust), N. (National C. (2019). Miscarriage: the signs and what really happens. [online] NCT (National Childbirth Trust). Available at: https://www.nct.org.uk/pregnancy/miscarriage/miscarriage-signs-and-what-really-happens [Accessed 28 Feb. 2021]. www.collinsdictionary.com. (n.d.). Bereavement counselling definition and meaning | Collins English Dictionary. [online] Available at: https://www.collinsdictionary.com/dictionary/english/bereavement-counselling [Accessed 28 Feb. 2021]. www.tommys.org. (n.d.). Coping with grief after the loss of a baby – for parents. [online] Available at: https://www.tommys.org/baby-loss-support/stillbirth-information-and-support/coping-grief-after-loss-baby-parents [Accessed 28 Feb. 2021]. www.who.int. (n.d.). Why we need to talk about losing a baby. [online] Available at: https://www.who.int/news-room/spotlight/why-we-need-to-talk-about-losing-a-baby.
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