Baby Loss Resources

by Band Back Together | Jul 7, 2018

What Is Loss?

Loss is the involuntary separation from something we have possessed and perhaps even treasured, or someone we love and care about.

Everyone experiences a loss at some point in their lives – whether or not it is major or minor. Loss is universal.

Loss involves emotional pain. Significant losses produce emotional upheaval. Loss requires change and uncertainty and adjustments to situations that are new, unchosen and uncertain.

There is no right or wrong way to feel after you experience a loss. Minor losses, such as the loss of an opportunity, may bring feelings of frustration, disappointment, or anger. Major losses can lead to similar feelings, overwhelming feelings, sadness, pain, or numbness.

You do not have to be “strong” after a loss to protect others around you. Expressing emotion is how the body and mind process and relieve the pressure of intense or overwhelming emotions. Crying or expressing other emotions does not make you less of a person. It is also not uncommon for people to feel numb. People who don’t cry may still be feeling the effects of a loss. Everyone expresses their pain differently.

No one can tell you how you should feel about something. Anyone who tries to tell you that how you are feeling is incorrect is wrong.

Losing your baby is ridiculously hard and devastating. There is so much lost opportunity and pain and heartbreak.

Please also visit Band Back Together’s resource page list, including miscarriage, coping with a miscarriage, loss, grief, and coping with grief and grieving.

Why Did My Baby Die?

When a baby dies before it is born or soon after birth, parents face a difficult emotional task: they must try to say goodbye to someone they had little chance to know. They must accept that a life has ended, even though it barely began. Just as with any death and loss of a child, you are likely to experience some of the more common symptoms of grief — you may go into shock or even deny that your baby has died. Depression, anger, frustration and other painful emotions are normal and to be expected. And even if you are normally a committed, caring person, you may find that you don’t care about anything or anyone right now. As noted earlier, for many parents this time is simply one of existence and survival and very little more. There are two normal reactions to death that you will probably experience very acutely after losing a baby before or shortly after birth: anger and guilt. Because a baby’s death seems so unnatural, there is an especially strong urge to blame someone. You may be very angry with your doctor, hospital or — if you are a believer — God.

Guilt is a common reaction to the death and loss of a child, and can be particularly acute for parents who lose an infant or an unborn baby. Parents of unborn babies who die often mistakenly blame themselves for the death. The mother may believe she harmed her baby. Both parents may tell themselves they should have sensed something was wrong and alerted their doctor. While this is a normal reaction and must be processed, eventually you must find compassion for yourself and realize that this was not your fault. You were not responsible. Knowing that it was not in your control has both an upside and a downside: you cannot blame yourself, but you may also have an increased sense of powerlessness. Getting through this is part of the process.

Many parents feel overcome by a tremendous sense of emptiness. Pregnancy brings with it a number of expectations, dreams and fantasies – you spend months planning not just the birth of your child, but also his or her life in all the years to come. Now, just as both parents are emotionally preparing to welcome a child into the world, you must instead accept the loss of both the baby and all of your expectations for their future.

For parents of infants, you will have a different set of triggers and potentially painful situations in the months following your baby’s death. Your home may be filled with baby clothes, bottles and a crib. If you registered with any new mother websites or infant sites, subscribed to any magazines or registered for a shower, you are likely to receive coupons for baby food or formula and more in the mail. A baby magazine may show up as a trial subscription. Photographers may call and offer to take baby pictures. Just walking past the infant-wear department in a store may initiate tears of mourning.

After the death and loss of a child it may be difficult to resolve the grief you feel for the baby you lost. Even before you can accept your baby’s death, you must accept his or her life — their existence as a person. Remember, no matter how brief your baby’s life, you have just as much right to grieve as any other bereaved parent.

Unfortunately, there’s not a one-size-fits-all answer to the question why did my baby die? – it varies in almost every case. Sometimes, the doctor’s don’t even know why a baby dies, which may be the hardest of all types of baby loss to process.

Baby loss is more common than most thing: as many as 10 to 15 percent of confirmed pregnancies are lost. The true percentage of pregnancy losses might even be higher as many take place (such as an early-term miscarriage) before a woman even knows that she is pregnant. Most losses occur very early on — before eight weeks. Pregnancy that ends before 20 weeks is called miscarriage. Miscarriage usually happens because of genetic problems in the fetus. Sometimes, problems with the uterus or cervix might play a role in miscarriage. Health problems, such as polycystic ovary syndrome, might also be a factor.

After 20 weeks, losing a pregnancy is called stillbirth. Stillbirth is much less common. Some reasons stillbirth occur include problems with placenta, genetic problems in the fetus, poor fetal growth, and infections. Almost half of the time, the reason for stillbirth is not known.

What is Neonatal (Baby Death) Death?

Neonatal death is when a baby dies sometime within the first 28 days of life. If your baby dies this soon after birth, you may have many questions about how and why it happened. Your baby’s health care provider can help you learn as much as possible about your baby’s death.

Neonatal death happens in about 4 in 1,000 babies (less than 1 percent) each year in the United States. Non-Hispanic black women are more likely to have a baby die than women of other races or ethnicities.

What Are Some Causes of Neonatal Death (Baby Loss)?

Premature birth.

This is when a baby is born too early, before 37 weeks of pregnancy. Babies born too early may have more health problems than babies born on time.

Low birth weight.

This is when a baby is born weighing less than 5 pounds, 8 ounces. Babies born too small may have more health problems than babies born at a healthy weight.

Birth defects.

Birth defects are health conditions that are present at birth. Birth defects change the shape or function of one or more parts of the body. They can cause problems in overall health, how the body develops or in how the body works.

Premature birth and low birth-weight cause about 1 in 4 neonatal deaths (25 percent). Birth defects cause about 1 in 5 neonatal deaths (20 percent).

Other causes of neonatal death include:

Problems in pregnancy

Preeclampsia is a condition that occurs only during pregnancy. Some symptoms of preeclampsia may include high blood pressure and protein in the urine, occurring after week 20 of pregnancy. Preeclampsia is often precluded by gestational hypertension. While high blood pressure during pregnancy does not necessarily indicate preeclampsia, it may be a sign of another problem. Preeclampsia affects at least 5-8% of pregnancies.

Who is at risk for preeclampsia?

The following may increase the risk of developing preeclampsia:

• A first-time mom
• Previous experience with gestational hypertension or preeclampsia
• Women whose sisters and mothers had preeclampsia
• Women carrying multiple babies
• Women younger than 20 years and older than age 40
• Women who had high blood pressure or kidney disease prior to pregnancy
• Women who are obese or have a BMI of 30 or greater

What are the symptoms of preeclampsia?

1) Mild preeclampsia:

high blood pressure, water retention, and protein in the urine.

2) Severe preeclampsia:

headaches, blurred vision, inability to tolerate bright light, fatigue, nausea/vomiting, urinating small amounts, pain in the upper right abdomen, shortness of breath, and tendency to bruise easily. Contact your doctor immediately if you experience blurred vision, severe headaches, abdominal pain, and/or urinating very infrequently.

Problems with the placenta, umbilical cord and amniotic sac (bag of waters).

During pregnancy, possible placental problems include placental abruption, placenta previa and placenta accreta. These conditions can cause potentially heavy vaginal bleeding. After delivery, retained placenta is also sometimes a concern. Here’s what you need to know about these conditions:

Placental abruption (abruptio placentae).

If the placenta peels away from the inner wall of the uterus before delivery — either partially or completely — a condition known as placental abruption develops. This can deprive the baby of oxygen and nutrients and cause you to bleed heavily. Placenta abruption could result in an emergency situation requiring early delivery.

Placenta previa.

This condition occurs when the placenta partially or totally covers the cervix — the outlet for the uterus. Placenta previa is more common early in pregnancy and might resolve as the uterus grows. Placenta previa can cause severe vaginal bleeding during pregnancy or delivery. The management of this condition depends on the amount of bleeding, whether the bleeding stops, how far along your pregnancy is, the position of the placenta, and your and your baby’s health. If placenta previa persists late in the third trimester, your health care provider will recommend a C-section.

Placenta accreta.

This condition occurs when the blood vessels and other parts of the placenta grow too deeply into the uterine wall. Typically, the placenta detaches from the uterine wall after childbirth. With placenta accreta, part or all of the placenta remains firmly attached to the uterus. This can cause severe blood loss after delivery. Your health care provider will recommend a C-section followed by removal of your uterus (hysterectomy). In aggressive cases, the placenta invades the muscles of the uterus (placenta increta) or grows through the uterine wall (placenta percreta).

Retained placenta.

If the placenta isn’t delivered within 30 minutes after childbirth, it’s known as a retained placenta. A retained placenta might occur because the placenta becomes trapped behind a partially closed cervix or because the placenta is still attached to the uterine wall — either loosely (adherent placenta) or deeply (placenta accreta). Left untreated, a retained placenta can cause severe infection or life-threatening blood loss.

The placenta grows in your uterus (womb) and supplies the baby with food and oxygen through the umbilical cord. The amniotic sac contains the fluid that surrounds the baby in the womb.

Infections, like sepsis.

Sepsis is a serious blood infection. Neonatal sepsis is a blood infection that occurs in an infant younger than 90 days old. Early-onset sepsis is seen in the first week of life occurs after 1 week and before 3 months of age.

Asphyxia

.Perinatal asphyxia, neonatal asphyxia or birth asphyxia is the medical condition resulting from deprivation of oxygen to a newborn infant that lasts long enough during the birth process to cause physical harm, usually to the brain.

Why are premature babies more likely to die shortly after birth than babies born on time?

Some premature babies may develop serious complications that can sometimes cause death. These complications include:

Respiratory distress syndrome (also called RDS). This is a breathing problem most common in babies born before 34 weeks of pregnancy. Babies with RDS don’t have a protein called surfactant that keeps small air sacs in the lungs from collapsing. RDS causes about 825 neonatal deaths each year.

Intraventricular hemorrhage (also called IVH). This is bleeding in the brain. Most brain bleeds are mild and resolve themselves with no or few lasting problems. More severe bleeds can cause serious problems for a baby.

Necrotizing enterocolitis (also called NEC). This is a problem with a baby’s intestines. It can cause feeding problems, a swollen belly and diarrhea. It sometimes happens 2 to 3 weeks after a premature birth. It can be treated with medicine and sometimes surgery. But in serious cases, it can cause death.

Infections. Premature babies often have trouble fighting off germs because their immune systems aren’t fully formed. Infections that may cause death in a premature baby include pneumonia (a lung infection), sepsis (a blood infection) and meningitis (an infection in the fluid around the brain and spinal cord).

What Birth Defects Most Often Cause Neonatal (Baby) Death?

The most common birth defects that cause neonatal death include:

Heart defects. Most babies with heart defects survive and do well because of medical treatments and surgery. But babies with serious heart defects may not survive long enough to have treatment, or they may not survive after treatment.

Lung defects. A baby may be born with problems in one or both lungs or with lungs that aren’t fully developed. Lung defects can happen when the lungs don’t develop correctly due to other birth defects or pregnancy problems (such as not enough amniotic fluid). Premature babies can have lung problems that cause neonatal death.

Genetic conditions. Genes are part of the cells in your body. They store instructions for the way your body grows, looks and works. Genetic conditions are caused by a gene that’s changed from its regular form. A gene can change on its own, or the changed gene can be passed from parents to children.

Brain conditions. Neonatal death can be caused by problems in the brain, like anencephaly. This is a condition called a neural tube defect (also called NTD) in which most of a baby’s brain and skull are missing. Babies with anencephaly may be stillborn (when a baby dies in the womb after 20 weeks of pregnancy) or die in the first days of life. If you’ve had a baby with anencephaly, talk to your health care provider about taking folic acid to help prevent NTDs in your next pregnancy.

Your health care provider can use prenatal tests (medical tests you get during pregnancy) to check your baby for birth defects before birth. These tests include:

• Amniocentesis (also called amnio). In this test, your provider takes some amniotic fluid from around your baby in the uterus. The test checks for birth defects and genetic conditions in your baby. You can get this test at 15 to 20 weeks of pregnancy.
• Chorionic villus sampling (also called CVS). This test checks tissue from the placenta to see if your baby has a genetic condition, like Down syndrome. You can get CVS at 10 to 13 weeks of pregnancy.
• Ultrasound. This test uses sound waves and a computer screen to show a picture of a baby in the womb. It can help find birth defects like spina bifida, anencephaly and heart defects.

Do You Need An Autopsy On Your Baby?

Your baby’s health care providers can tell you what they know about what caused your baby to die. If you want more information, you may want to have an autopsy on your baby. An autopsy is a surgical exam of your baby’s body after death to help find the cause of death and any diseases or injuries. An autopsy gives information about why a baby dies in more than 1 in 3 cases. This information can be helpful to you if you think you may want to have another baby in the future. It’s your choice whether or not to have an autopsy on your baby. Families often have to pay for an autopsy, so ask your baby’s health care provider about payment. Some hospitals or states may pay for a baby’s autopsy; most health insurance companies don’t pay for one.

If you don’t want to have an autopsy, your baby’s health care provider may be able to use other tests to find more information about why your baby died. These tests include genetic tests, X-rays and tests on the placenta and umbilical cord.

If the cause of your baby’s death was a birth defect, you can meet with a genetic counselor to learn more about it. You also can learn about the chances of having another baby with the same birth defect. A genetic counselor is a person who is trained to help you understand about how genes, birth defects and other medical conditions run in families, and how they can affect your health and your baby’s health.

What Are The Kinds of Baby Loss?

Miscarriage is defined as the spontaneous loss of a fetus before the 20th week of pregnancy. (Pregnancy losses after the 20th week are called preterm deliveries.)

Stillbirth is defined as fetal death after 20 weeks of pregnancy. These tragic deaths occur in about 1 in 160 pregnancies.

Neonatal Death is defined as when a baby dies within the first 28 days of life. In the United States in 2006, about 19,000 babies died in their first month.

Sudden Infant Death Syndrome (SIDS) is the unexpected, sudden death of a child under age 1 in which an autopsy does not show an explainable cause of death.

Sudden Unexplained Death In Childhood (SUDC) is the sudden and unexpected death of a child over the age of 12 months, which remains unexplained after a thorough case investigation is conducted.

Accidental Death is heartbreaking for many reasons. Whether a car accident, a fall or some other tragic accident, these losses are hard to deal with.

What If My Baby Dies Before Birth?

If your baby dies before birth, your doctor may have some suggestions for how to proceed. These options may differ based upon the gestational age of the baby. For example, women who lose their baby before week 20 of pregnancy have what is called a “miscarriage” and may require a D & C to remove the baby. If you are farther along than that, your doctor may suggest the following;

The prenatal death of a baby is one of the cruelest things a person can face, and while it is often confirmed by ultrasound examination, unfortunately women still must give birth to her child. If your baby dies before birth, your doctor will discuss the options of waiting for labor (depending upon how far along you are) or inducing labor with prostaglandin gel, a hormone drip or other options. The plan for the birth, including methods of pain relief and your choice of support persons, will also be discussed. Your doctor may be able to describe the expected size and appearance of your baby which can help people prepare for the birth. You may want to arrange for Now I Lay Me Down To Sleep to come to take beautiful photos of you and your child. This is a free service and should be used if wanted. You may not want the pictures initially, but some people do find having the photos does help with the grieving process.

If your baby dies before, during or soon after birth, he or she can stay with you for you to hold, love, and dress if this is what you would like to do. You may not feel that you want to do this at first, but you usually will have some time to change your mind if you want to.

You will need to name your baby. Later on it will help when you can remember your baby by his or her name. Some parents may choose to bless or baptize their baby. The hospital will take photos for you and help you to arrange a funeral. Most hospitals will have social workers who can help.

Your doctor will probably suggest that an autopsy (be done to work out why your baby died. Afterwards, your doctor will talk to you about the results.

Preparing For After Birth:

After a stillbirth or neonatal death, you will still need to recover from the birth.

• You will lose blood through your vagina (like a heavy menstrual period) for 6+ weeks
• Your breasts will still produce milk, which can be uncomfortable. Pain relief medication such as paracetamol, a well fitting bra and cold packs may help. After a few days, your breasts will become less full, but you may still have some milk in your breasts for a long time. There may be some other treatments available to help. Talk with your obstetrician, doctor or midwife.

If you are well, you can go home from hospital soon after the birth. The hospital will usually arrange for someone to visit you in the days that follow the loss. Your doctor will organize a check-up for you within a few weeks.

Am I The Only One In This Situation?

NO! Not at ALL! You are, unfortunately, very much not alone.

Ten to twenty-five (10-25) percent of pregnancies end in miscarriage.

One in one hundred and sixty (1/160) pregnancies will end in stillbirth.

Six out of every 100 babies born in the US will die in the first month of life. (29th highest mortality rate in the world)

These numbers are shocking, but they serve to show you that you are certainly not alone. There are many MANY others who know how you feel.

Why Do I Feel So Sad All The Time?

Grieving is hard. The most important thing to remember is that you have to GO THROUGH the grief instead of GOING AROUND the grief. You need to encounter and experience all the stages before true healing can begin.

It’s OK to feel sad. You lost your child, your hopes and dreams. Sadness is normal. But if after a few months, you’re unable to function in daily life without crying all the time, seeing a doctor is probably a good idea. Depression and anxiety, often lumped together as PTSD, is a common diagnosis for grieving parents. Luckily, there are ways to treat you so you can continue being productive and vibrant.

What Does “Normal” Feel Like After My Baby Dies?

Aah, the million dollar question. Likely, your world will never be normal again. Whatever normal is.

You’ll begin to seek your “new normal” which will be some form of your former self and the development of a new self.

It will take a while before you start feeling yourself slip into a new routine. Whether you were pregnant and dreaming of a glowing pregnancy and new baby and lost the baby at 10 weeks or 20 weeks or you had to deliver a stillborn baby, your life changes. If your child is 3 days old or 2 years old, your life changes.

You are tasked with learning to live in your old world with your new view of life. That view is likely one that includes fear, anger, sadness, mistrust of others, guilt, and loss of relationships.

How Do I Cope With Losing My Baby?

The death of a baby is always a tragedy. It will be painful for both the parents and for other family and friends.

The loss of your pregnancy at any stage can have a big impact on you and your partner. One day you are pregnant and planning your future life with your child, and then within a short time, your pregnancy ends, and your dreams and plans are gone.

The feelings can be very intense:

• Sadness
• Anger
• Irritability
• Crying
• Difficulty sleeping
• Dreams/nightmares
• Disbelief
• Guilt
• Confusion
• Isolation
• Not wanting to be alone
• Not wanting to see anyone
• Wanting to talk.

It is important to remember that they will reduce with time. It is also important to remember that your own experience is unique and you have the right to recover in your own way and in your own time.

You will need recuperation time, especially to recover emotionally. Try to reduce challenges as much as possible and allow yourself time to be with people with whom you are comfortable. Give yourself as much time as you need to recover.

Whatever your feelings, allow yourself time to grieve, to cry, and to talk about the emotions you feel. Do not expect too much of yourself.

• It can be a big help to find someone you can talk to who will listen and understand.
• You may benefit from contacting a baby loss support group and talking to other parents who have had a similar experience.

Your partner will also experience a wide range of feelings and may be unsure how to comfort and help you. His feelings about the loss are different from yours. You may each grieve in different ways and it is important to talk to each other and to be aware of each other’s feelings.

The doctors and midwives will support you emotionally by giving you and your family information, answering your questions and listening to your concerns and feelings. Most hospitals also have social workers who you may want to talk to

Recovery from a loss like this can take a very long time, and some women still feel sadness at special times each year for many years.

How Do I Take Care Of Myself After Losing a Baby?

Your body needs time to recover after pregnancy. You may need more time depending on how far along you are when your pregnancy ends. Here’s what you can do to take care of yourself:

• Eat healthy food, like fruits and vegetables, whole-grain breads and pastas, and low-fat chicken and meats. Stay away from junk food and too many sweets as much as you can.
• Do something active every day, even if it’s just a walk.
• Try to stick to a sleep schedule. Get up and go to bed at your usual times.
• Don’t smoke and stay away from secondhand and third-hand smoke.
• Tell your provider if you have intense feelings of sadness that last more than 2 weeks that prevent you from leading your normal life. If so, you may need treatment for depression. Treatment can help you feel better. If you’re thinking about suicide or death, call 911.

You need time to recover emotionally, too. Certain things, like hearing names you were thinking of for your baby or seeing the baby’s nursery at home, may be painful reminders of your loss. Your body’s physical recovery also may remind you of your baby, like if your breast milk comes in after a stillbirth. A counselor, social worker or support group can help you learn how to deal with these situations and the feelings they create.

What Do I Say To Someone Who Has Lost A Baby?

If you found this page because you have a friend or family member who has lost a child, thank you for caring. The fact that you want to know what to say to him or her shows how much you care. Below is a post that will give you some insight into what you should and shouldn’t say.

Ways To Memorialize Your Baby:

You can do special things to remember your baby, even if didn’t have a chance to see, touch or hold him. Remember your baby in ways that are special to you. You may want to:

• Collect things that remind you of your baby, like ultrasound pictures, footprints, a lock of hair, a hospital bracelet, photos, clothes, blankets, or toys. Put them in a special box or scrapbook. Keepsakes like these can help you remember your baby.
• Have a service for your baby, like a memorial service or a funeral. A service can give you a chance to say goodbye to your baby and share your grief with family and friends. Your hospital may have a service each year to remember babies who have died.
• Write your thoughts and feelings in a journal, or write letters or poems to your baby. Tell your baby how you feel and how much you miss her. Or paint a picture for her.
• Light a candle or say a prayer in honor of your baby on holidays or special days, like his birthday or the day he died. Do something on your own or bring family and friends together to remember your baby. Read books and poems or listen to music that you like and find comforting.
• Plant a tree or a small garden in honor of your baby.
• Have a piece of jewelry made with your baby’s initials or birthstone.
• Donate to or volunteer for a charity in your baby’s name, or give something to a child in need who’s about the same age as your baby would be.
• Dedicate a project to your baby, like raising money to build a swing set in a park

Conceiving After A Loss:

Additional Baby Loss Resources:

Now I Lay Me Down To Sleep– a non-profit network of professional photographers around the country that will come to the hospital and offer free professional portraits to families who have lost a baby. They’re a great organization.

Faces of Loss– group blog for the baby loss community. Anyone can submit stories of miscarriage, stillbirth and pregnancy loss.

International Stillbirth Alliance– a non-profit coalition of organizations dedicated to understanding the causes and prevention of stillbirth. Our mission is to raise awareness of stillbirth and to promote global collaboration in the prevention of stillbirth and provision of appropriate care for parents whose baby is stillborn.

Bereavement Materials about grief and grieving the loss of a baby (from March of Dimes)

How to Stop Lactating – From The Glow in the Woods Bloggers

How to Plan a Baby’s Funeral– From the Glow in the Woods Bloggers

The Compassionate Friends– The Compassionate Friends organization provides online and in person support for families who have lost a child, regardless of their age. They provide local chapter meetings, candlelight memorials and grief support for siblings and grandparents.

First Candle– First Candle has resources for parents, grandparents and friends to help deal with the the grief of the loss of a child. They offer grief counselors 24/7.

Sudden Unexplained Death in Childhood Program– The SUDC Program was created to be a centralized resource for those affected by a sudden unexpected death in childhood, whose cause is left undetermined, unclear or unexplained. The site offers counselors for all family members, a huge database of resources and many articles.

Empty Cradle, Broken Heart: Surviving the Death of Your Baby -by Deborah L. Davis, PhD- This was by far the best book I read after the loss of our child. It has wonderful information on issues such as the loss of multiples, stillbirth, miscarriage, ectopic pregnancy and infant loss. There is a special chapter for fathers and it’s an exceptional book for doctors, nurses, grandparents and others to read to help them offer comfort to the grieving parents.

Everlasting Memories – wonderful online retailer that specializes in cremation urns and memorial jewelry.

Still Birthday – Wonderful resource page full of love, support, and information about all things related to miscarriage and baby loss. In addition to information about the loss, there is information about how to care for yourself during this incredibly difficult time. It also contains information about how to start the process again after a loss.

Page last audited 7/2018