Pregnancy and Infant Loss Support

The loss of a pregnancy or infant is incredibly hard to talk about. But breaking the silence can be healing for grieving parents, allowing them to commemorate their babies' lives. And awareness can improve bereavement care and reduce preventable deaths. Sentara recognizes Pregnancy and Infant Loss Awareness Month in October in support of those grieving and in the hope of improving future outcomes.

A Devastating Loss

Jordan Kendall-Horn, 32, and her husband, Travis, had a seemingly normal, low-risk pregnancy and were on track to have a healthy baby boy in 2019. But over the last several weeks of her pregnancy, her baby's movements slowed. Kendall-Horn's health care team assured her that this was "normal" towards the end of pregnancy. Two days later she went to the hospital after not feeling any movement and was devastated to learn there was no heartbeat. Their son, River Hendrix Horn, was born silent.

"In the days and weeks after his passing, we just focused on taking care of each other," says Kendall-Horn. "The time in the hospital felt like a blur. The most helpful part of the process for us was the bereavement coordinator. She explained the details of what we could expect and other things like what resources were available. She was also the person who informed me about breast milk donation, which I chose to do after we went home."

Following their son's death, Kendall-Horn and her husband were struggling to make sense of their loss. Kendall-Horn says she wanted answers for herself as much as to be able to prevent other families from dealing with this heartbreak. This is how she discovered advocates involved with the push for better research on pregnancy and infant loss.

What's the goal of raising awareness?

The STAR Legacy Foundation identifies several reasons why raising awareness of pregnancy and infant loss is important, among them:

• Grief Support

  "Grieving parents may feel exhausted, sad and angry, among many other emotions," says Melissa York, perinatal bereavement coordinator for the Family Maternity Center at Sentara Leigh Hospital. "Grief support groups – whether in person or online – let the parents know they are not alone."

  There are also support groups available for loved ones of families who experience loss. Families surrounded by those who have a solid understanding of what they are going through will feel more supported. It is also very hard for newly bereaved families to have to explain the various types of loss. There are important differences among losses such as stillbirth or miscarriage, or neonatal death or other conditions.

• Stop Stigma

  One in four women will lose a baby during pregnancy, delivery or infancy. No matter the circumstances surrounding the loss of a baby, all women deserve respectful and dignified health care that acknowledges the loss, provides support and empowers them to make future decisions about having a child.

  "Sadly, women can feel shame when they lose a baby," says Maisie Mathews, bereavement services coordinator with Sentara RHM Behavioral Health. "We encourage them to talk about their experience and loss. Sharing can create a community of empathy and support."

  And shame is a word Kendall-Horn uses when describing her early emotions regarding her loss. "By sharing our experience and becoming empowered through knowledge and advocacy, I found that it lessens the shame that attaches itself to loss of this nature," shares Kendall-Horn.

• Prevention

  Not all pregnancy loss is inevitable. The PUSH for Empowered Pregnancy organization is dedicated to drive down the incidence of stillbirth in the United States over the next decade. They provide resources to have a safer pregnancy, including knowing your risk factors, common tests and simple steps such as side sleeping during your third trimester and how to monitor your baby's movements.

  The World Health Organization identifies the following steps that can help prevent some stillbirths:

  1. Ensuring early diagnosis of pregnancy.
  2. Effective prenatal care from the start of pregnancy.
  3. Proper screening for any medical conditions which may have a negative impact on pregnancy outcomes.
  4. Monitoring the baby's heart rate during appropriate times during pregnancy and throughout labor.
  5. Treating infections such as malaria and syphilis, and good surveillance during labor.

  Kendall-Horn learned after her loss that a baby "running out of room at the end of pregnancy and moving around less" is not normal. A baby's movements are an important sign of their well-being in the third trimester.  And understanding this is one simple way to reduce stillbirths.

• Improve Health Equity in Infant Loss and Maternal Deaths

  A health disparity is a difference between the health of one group of people compared with the health of another group that has more advantages. The causes of health disparities are complicated. Health disparities are prevalent in pregnancy and infant loss. Some racial and ethnic groups experience pregnancy and infant loss more than others. According to research studies Non-Hispanic Black, Native Hawaiian/Other Pacific Islander (NHOPI), and American Indian/Alaska Native (AI/AN) infants die at a rate of approximately twice that of non-Hispanic White infants.

  There are many reasons for these disparities. Access to and use of health care services before and during pregnancy is one reason. Providing better access to health care and education about infant loss, including resources and tips for prevention, are one of the keys to improving health equity for this issue, with the goal of lowering the rate of infant loss as well as maternal deaths.

  "As a black woman, I was well aware of the statistics regarding black maternal death rates, but little did I know, I was going to become a statistic in another way," Kendall-Horn laments about her own experience.

  Pregnancy and Infant Loss Support

  Everyone grieves differently but there are support options that may provide some comfort. 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.

  You may grieve for your baby for a long time, maybe even your whole life. There's no right amount of time to grieve. Mother's Day and Father's Day posts on their social media profiles often include mentions of River, notes Kendall-Horn. He continues to be a part of their family history and always will be.

  How to Help a Loved One with Their Loss

  Sometimes the hardest part is knowing what to say or do for parents experiencing this loss. Download our Pregnancy and Infant Loss Info sheetto learn more about what to say and how to help grieving parents.

  Kendall-Horn says that sometimes they were trying to process their own emotions while considering the well-being of loved ones who wanted to be around and help them. "We know everyone meant well and struggled with their own emotions around the loss," she explains. "I'm not sure there is any easy answer for questions of etiquette in these situations. Just follow the lead of the parents."

  New Life After Loss

  In September 2020, Kendall-Horn gave birth to their son Alder. She and her husband still speak of their first son, River, often. "We never stop longing for River," she says, "But we are grateful, so grateful we get to parent Alder."

  Today, Kendall-Horn is blessed to be in her second pregnancy after loss and says, "I have found that the knowledge I gained has empowered me to speak up, made me comfortable when asking questions and lessened my anxiety to some extent. Also, it fills my spirit every time I am able to honor River's name and memory in such a positive way. This cannot be understated."

  International Wave of Light

  You are invited to join others across the world to light a candle at 7 p.m. on October 15, in honor of any baby who has died too soon. Keep it burning for at least one hour. Candles will be lit in every time zone all over the world to observe Pregnancy and Infant Loss Awareness Day.

  Support Available At Sentara

  Sentara Health offers support for pregnancy and infant loss in our hospitals. Several of our hospitals have a Memorial Tree set up over the winter holidays. Those who experienced a pregnancy loss that year are invited to make personalized ornaments and hang them on the tree in honor of their angel baby. Several locations also offer a Memorial Tree Service as part of the remembrance.

  At Sentara Leigh Hospital, on October 15, maternity team members are given palm-sized knitted purple hearts to represent grief. They are invited to the chapel for a prayer. There's also a hospital-wide announcement and a moment of silence to remember all angel babies.

  "We recognize the way these losses impact not only our grieving parents but our maternity team as well. The purple heart is a year-round physical reminder of the grief and sentiment of loss. This gives us the opportunity to reflect on any personal or shared losses we've experienced," says York.

  Our hospital maternity units provide grieving families precious time with their babies as well as sentimental items such as pictures of the baby, a keepsake box with footprints, baby bracelets, blankets and more. "We understand how much our grieving parents value these tangible memories of their baby," says Brenda Elmore, lactation consultant at Sentara Albemarle Medical Center.

  Another service is provided by Now I Lay Me Down to Sleep. This organization sends a professional photographer to provide heirloom portraits to families facing the untimely death of an infant.

  Sentara Bereavement Coordinators also connect grieving parents with information on support groups available in their area.

  National Grief Support

• PUSH Pregnancy and Infant Loss Resources
• Postpartum Support International (PSI) Loss and Grief Specialized Support Groupsincluding: Black Moms in Loss Support Group, Early Pregnancy Loss Support for Moms, Pregnancy After Loss Support, Dad's Support Group and Military Moms Support.
• Share Pregnancy and Infant Loss Support Online Support
• Star Legacy Infant Loss Support Resources

Prevention/Education:

• PUSH for Empowered Pregnancy
• Measure the Placenta
• Count the Kicks