When Annie Horton was pregnant with her third child in 2015, she had a sense early on that something wasn’t right.
“Everything felt really different. (from my other pregnancies),” said Horton. “But my doctor kept assuring me that everything was fine.”
When she became sick and was unable to walk, Horton rushed to the doctor. An ultrasound revealed she had a hole in her placenta and needed to go to the hospital immediately.
At the hospital, she learned that in addition to the problem with her placenta, her baby had a condition called holoprosencephaly - a developmental abnormality in which the brain doesn't properly divide into the right and left hemispheres. The condition is fatal within two years.
So at 22 weeks, on her birthday, Horton delivered her son Isaiah. He passed away a short time after delivery. She held him for several hours, listening to the cries of healthy babies in the nearby rooms. A lullaby played over the hospital intercom every time a baby was born.
“I remember I just wanted to get out of there as quickly as possible; I just wanted to get home,” said Horton, who found comfort by taking a job as Chapter Coordinator for Share Pregnancy & Infant Loss Support in 2016, helping other parents experiencing the pain of losing an infant.
Raising Awareness About a Common Problem
Roughly one in four pregnancies end in loss, while one in 160 pregnancies end in stillbirth (Stillbirth is when fetal death occurs after 20 weeks of pregnancy).
In 1988, President Ronald Reagan declared October Pregnancy & Infant Loss Awareness Month to recognize the unique grief of parents who have lost a baby through miscarriage, stillbirth and infant loss. Doing this was a way to show support for families who have lost infants – often called angel babies - due to miscarriage, ectopic pregnancy, stillbirths, birth defects and sudden infant death. It’s also an opportunity to raise awareness and educate about pregnancy and infant loss*.*
Oct. 15th is National Pregnancy and Infant Loss Remembrance Day, started in 2006 by miscarriage awareness activist Robyn Bear who had six miscarriages over a two year period.
At a Loss For Words
Sadly, families face these deeply painful losses every day, but they receive little attention. Many parents feel alone after their loss of their baby. Mothers may feel a sense of guilt, a sense that their body has betrayed them or that they did something wrong that caused the loss.
They must also deal with the reality that the baby who they have excitedly anticipated – who they have bonded with since they learned they were pregnant – will not be coming home with them.
“They’re really grieving what isn’t going to happen,” says Sarah Lawrenz, executive director of Share Pregnancy & Infant Loss Support based in St. Charles, Missouri. “You’re never going to take your child to kindergarten or walk them down the aisle. Whether it’s 20 days ago or 20 years ago, it can still be difficult.”
Making it worse, friends and family often don’t know what to say. They may avoid the topic altogether.
“Saying nothing is the worst thing you can do,” Horton says. “Remembering and asking about him and about our story is always comforting and nice.”
Even medical professionals may be uncomfortable working with grieving parents. Share and other organizations conduct programs to educate them about how best to support families who have suffered a loss. They are encouraged to ask parents if they want to bath and hold their babies, take photos of them, name them and get a lock of their hair and footprints and handprints
Some hospitals now have a special room for families who have who have a stillbirth, away from other families on the maternity ward. The way parents are treated in the hospital can define their grief journey.
“We tell them that even though it’s uncomfortable for them, it’s important to be present, to ask families what they need,” Horton says. “We do a lot of training about what to do at the bedside – what to say and what not to say. Don’t call a miscarriage an abrupt abortion. No mother wants to hear that.”
Among other things not to say are “At least” statements - “At least you didn’t get too attached to him, at least you didn’t get too attached to him, at least you already have a child..”
“But parents want that baby,” said Lindsey Wimmer, executive director of the Eden Prairie, Minnesota-based Star Legacy Foundation. “They’re losing the hopes and dreams they had for that baby. They come home to a nursery they spent months preparing, without their child.”
Wimmer, a nurse practitioner, has experienced this pain first hand. She was pregnant with her first baby when at 38 weeks, his movements changed dramatically. She woke up in the middle of the night with an overwhelming sense of dread and a certainty that something horrible had happened to her baby.
She went to her doctor’s office and her worst fears were confirmed; there was no heartbeat. Labor was induced and she had to give birth to the baby boy, which they named Garrett. While the hospital doors around her were decorated with pink or blue ribbons, hers was adorned with a teardrop.
“It was one of the hardest things I’ve ever faced in my life,” Said Wimmer. “I was blindsided. Even being a nurse, I had no idea how often these tragedies were happening.”
The Power of Paying It Forward
Wimmer found comfort by paying it forward. As she dealt with her grief and questions about what went wrong, she saw a need for a resource focused on neonatal and infant deaths. In 2004, she started the Star Legacy Foundation, which has grown into a nationwide network of researchers, policy makers, and advocates dedicated to healthy pregnancy outcomes and stillbirth prevention.
The nonprofit nationwide organization provides education, support research, offering family support, raising awareness, and encouraging advocacy. Families are encouraged to post their Star Stories on the site, sharing the photos and the story of their infant. Star Legacy’s focus is to prevent these stillbirths and ensure optimal care for families when prevention isn’t possible.
The foundation also plays an advocacy role, working with lawmakers to affect policies that can make life easier for parents who have lost a baby.
For example, they are working with several states to grant stillbirth families a one-time tax credit/deduction equivalent to the dependent child tax credit to help offset unexpected expenses of burial, mental health therapy and costs not covered by insurance companies.
“Starting the foundation was a big part of how I recognized Garret’s place in my life,” Wimmer said. “I’ve tried to make something good out of something bad. People find their own way.
Lisa Hays learned she was pregnant in the fall of 2010, after nine months of trying for their second child. Although the pregnancy was uneventful at first, everything changed at 19 weeks. At a routine ultrasound on Jan. 18th, 2011, they saw a strong heartbeat and learned they were having a boy. But then the doctor said, “I’m going to have the doctor complete the ultrasound…the limbs look a little short.”
They learned their baby had Thanatophoric Dysplasia, a very rare skeletal disorder that is always fatal at birth. Just like that, the appointment turned into one of the worst days of their lives. Rather than carry her son for another 20 weeks only to lose him, they chose to terminate the pregnancy.
Luke Hudson Hays was delivered at 6:45 a.m. on January 21, 2011 – nine inches long, weighing 10.3 ounces. When a friend sent her a memory box she had purchased on Amazon, Hayes was inspired to help others suffering a similar loss.
“I thought the concept was really beautiful,” says Hays, who lives in Austin, Texas. We took it a step further. We thought, ‘Wouldn’t it be great to give people something like this without having to pay for it?”
By December 2011, she formed a 501(c)3 nonprofit to start Luke Lives On. The organization now partners with 26 hospitals in seven states to aid grieving families post-delivery by donating loss boxes in the months of January and June – months to memorialize Luke’s birthday and due date. The boxes contain comfort items like candles and tea as well as information about local support resources.
Luke Lives On now partners with 26 hospitals in seven states to provide the boxes to patients. They also ship boxes to families who have lost a baby. Since it was founded, Luke Lives on has provided more than 4,000 boxes to families.
“We left with empty arms and a broken heart,” Hays recalled. “Our box eliminates the empty arms a family may have when leaving the hospital.”
The Power of Keepsakes
For many parents, a major part of the healing process involves creating rituals to memorialize their baby. It may mean lighting a candle on a baby’s birthday, or hanging a Christmas stocking with the baby’s name. Some people do annual butterfly or balloon releases or adopt a family and donate presents in honor of their child. Share’s Lawrenz recalls one family who brings a Santa into their home every Christmas – setting up a sleigh in their garage - in honor of their son.
“Everyone finds their own special way,” Wimmer says. “There is no right or wrong way. What feels good this year may not feel good next year.”
Many people want special mementos to remember their baby, whether it be a special Christmas ornament or jewelry with their child’s footprint on it. They may take the ashes and have it made into a diamond.
At Share, they host a memory-making class, where parents, grandparents and siblings can make keepsakes for their baby. One mother made a bracelet that said “I hold you in my heart” in Morse code.
Susan Mosquera channeled her painful experience into a business to help others memorialize their babies.
Mosquera launched My Forever Child after her son was stillborn two weeks before his due date. Using her experience handcrafting jewelry experience, she created miscarriage and stillbirth jewelry and keepsakes. The company’s offerings include custom charms and keychainswith the image of a child’s actual hand-prints and footprints.
“I knew it was calling to help others that are in various stages of grief and healing, and also to help raise awareness for causes and advocacy for the prevention of future losses,” Mosquera said. “Often times we do not express our true feelings to others, and we keep our sadness and grief deep inside. Wearing or displaying a personalized memorial is a beautiful way to acknowledge, remember, and honor someone who has impacted your life but has passed on way too soon.”
After her daughter Eliza was stillborn, Brooke Taylor Duckworth surrounded herself with mementos. She ordered a print of her name in the sand, taken at sunset on a beach in Australia b and had it printed large and framed. She scanned the footprints that were done at the hospital and had them reproduced by an Etsy artist in a glass ornament that she hung among family photographs along her staircase.
In the days that followed her death, she was given a necklace with her name on it. Over time, her jewelry box filled with mementos that included her name or represented her in some way, from a duck charm to a necklace inscribed with the words, “Be brave, for I am always with you.”
“What I needed were mementos of love – proof of her life and of the love we felt for her even after she was gone,” Taylor Duckworth, wrote in Sharing Magazine, SHARE’s online magazine. “As years have gone by, and my grief nestles in among the joys that have followed and the hustle and bustle of ordinary life, I’m grateful for the permanence of these things in my home. Even if I’ve seen her portrait so many times that I can simply pass it by as I haul another load of laundry upstairs, it’s important to me that it hangs there as proof that she existed.”
Even after the birth of other healthy children, parents say it doesn’t lessen the pain they feel over the baby they lost.
“There’s an urge for people to assume and hope another baby will take the sadness away and make everything better,” says Wimmer, who now has three children “Your future children will never replace children you lost. Acknowledging that is okay.”
A year after Isaiah was born, Horton gave birth to a baby girl, Millie, who will turn three in November. But Isaiah is still very much a part of the family. On their shared birthday, Horton gets up early and walks around the baby memorial garden at a nearby cemetery.
“There’s not a day that I don’t think about him,” said Horton. “At big events – when the kids are going back to school, at birthday parties for other children – I wonder what our life would be like if Isaiah was alive. I know there are many other parents feeling exactly how I’m feeling in this moment and wishing they for more moments with their child. The biggest thing I’ve learned through my own experience is you’re not alone.”
How Friends and Family Can Help
Simple gestures are often the best and most meaningful.
- Be present.
- Say “I’m sorry.”
- Use the baby’s name.
- Ask them to tell you about their baby, or ask to see/hold the baby if appropriate.
- Ask to see pictures of the baby if they were taken.
- Acknowledge them as parents. This is particularly difficult for families who do not have other living children. They are parents and should be supported accordingly.
- Remember the father. Mothers often receive the majority of the concern, but fathers grieve too and appreciate their grief being acknowledged. Fathers tend to be strong for the mother and may not feel they have permission to grieve themselves.
- Support their decisions. There are many new decisions that need to be made regarding medical care, testing, cremation or burial arrangements, memorial services, cultural or religious ceremonies, what do with baby’s things, and more. It may be appropriate to help the parents carry out these decisions, but do not judge what they have chosen.
- If you don’t know what to say, tell them that. The honesty that this can’t be easily fixed is validating and indicates you respect the family’s emotions.
- Offer to do specific tasks for the family. When grieving, the family is not often able to identify how they could use help and will not usually have the strength to call someone who has offered to help. For example: “May I bring you dinner tomorrow evening?” Other tasks could include caring for other children, cleaning the house, washing the car, doing laundry, picking up family members at the airport, going to the store, researching funeral homes or support resources, and calling employers or extended family and friends.
- Offer to help the family with many of these same daily tasks in the weeks or months after the memorial service when most of the help has ended.
- Attend the memorial services or funeral.
- Offer a keepsake or memorial item. Flowers, photos, trees, figurines, and jewelry are examples of items that can be a source of comfort, support, and remembrance.
- Remember them in the months and years to come. Call, send a card, or offer to spend time with them on milestone days. The pain does not end with the delivery or memorial services. As the parents dreamt about this baby, they also dreamt about sharing special moments as a family. Their loss includes the loss of these dreams.
- Acknowledge the baby and their loss on special dates. For example: The baby’s due date, holidays, mother’s day and father’s day, anniversary of the baby’s birth/death date, and more.
- Recognize that if/when another pregnancy occurs or baby is born healthy, it will not eliminate the grief over this baby and the new baby will not replace the baby who has passed. Any future pregnancies will bring a new level of anxiety and concern. Also recognize that not all perinatal losses are followed by future pregnancies.
- Remember their baby by including the baby’s name on a holiday card, making a donation in the baby’s memory, doing a random act of kindness to honor the baby. Use your imagination. They will appreciate the effort made on their child’s behalf.
- Don’t push them to participate in activities you think may be helpful. Being around babies, attending baby showers, participating in family celebrations, and similar activities may be too much for them for quite some time.
- Give them time to grieve. Grief is a long, complicated journey that requires significant energy and time. Parents are required to create a “new normal’ for themselves. This process often takes 1-2 years or more. They will learn to find hope and joy in life again, but it will not happen right away.
- Know that your support will be an essential tool for them as they progress through this complex process.
What Not to Say
Avoid statements that minimize their emotions, tell them how to feel, or rely on religion (unless you are certain it is how the family is feeling).
- It’s probably for the best.
- It was God’s will.
- It would have been worse if …
- Now you have an angel.
- You’re young and can have more.
- There must have been something wrong with the baby.
- Your baby is lucky to be in heaven.
- At least he/she didn’t suffer.
- You’re lucky you have other children.
- You’ll be a parent someday.
- At least you didn’t know him/her.
Source: Star Legacy Foundation (http://www.october15th.com/)
Star Legacy Foundation: The Star Legacy Foundation is a nonprofit organization dedicated to reducing pregnancy loss and neonatal death and improving care for families who experience such tragedies. It is a community of families, health professionals, researchers, policy makers, and individuals dedicated to helping every pregnancy have a happy ending. The Star Legacy Foundation believes:
- Many of the 26,000 annual stillbirths and additional neonatal deaths in the United States are preventable.
- Expectant parents should be informed about stillbirth risks and educated on ways to reduce any risks
- Standard prenatal protocols should include third trimester ultrasounds to identify known stillbirth risk factors and subsequent management when risk factors are identified.
- Pregnancies with risk factors for stillbirth, especially if multiple risk factors exist, should be managed as high-risk pregnancies
- Stillborn babies should be recognized with a certificate of birth resulting in stillbirth.
- Stillbirth families should be afforded a one-time tax credit/deduction equivalent to the dependent child tax credit to help offset unexpected expenses of burial, mental health therapy and costs not covered by insurance companies.
Share Pregnancy & Infant Loss Support: Share is a community for anyone who experiences the tragic death of a baby as well as the professionals who care for grieving families. Share is a national organization with over 86 chapters in 29 states. Services include bed-side companions, phone support, face-to-face support group meetings, resource packets, private online communities, memorial events, training for caregivers, and so much more. Should you need them, we hope you can also benefit from at least one of these many resources. Each year, Share holds four burials in partnership with local funeral home
Now I Lay Me Down to Sleep (NILMDS): The Mission of NILMDTS is to provide remembrance photography to parents suffering the loss of a baby with a free gift of professional portraiture. Remembrance photography can be important step in the grieving process, providing a tangible memento for parents to have to memorialize their child.
M.E.N.D. (Mommies Enduring Neonatal Death): M.E.N.D. is a Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death. It publishes free bi-monthly magazines, holds commemorative ceremonies, and host a variety of support groups throughout the nation.
Grieve Out Loud: Grieve Out Loud is a comprehensive holistic bereavement care Its mission is to help families of pregnancy loss and infant death to build a strong foundation to ensure the family’s grief journey is healthy, complete and contains little regret Grieve Out Loud was started in January 2010 by a group of parents who understand the pain of losing a baby and are passionate about helping others in their own grieving process.
Luke Lives On: . This nonprofit organization partners with hospitals to aid grieving families post-delivery by donating loss boxes in the months of January and June. The boxes contain comfort items like candles and tea as well as information about local support resources.
Baby Steps: Baby Steps, named after the baby steps that form the long and difficult road to recovery from the loss of a child, is a nonprofit organization dedicated to raising funds for research into childhood illnesses and their treatments. Babystepsgiftshop.com has an exclusive line of gifts for children and adults. Proceeds from these items are donated to the Hospital for sick children.
First Candle: First Candle is a 35-year-old nonprofit organization dedicated to reducing the rates of Sudden Infant Death Syndrome (SIDS) and offering bereavement support for grieving families. In 1994, First Hendry partnered with the National Institutes of Health on the Back to Sleep campaign, which led to a reduction in the rate of SIDS by more than 50 percent.
A Memory Grows: A Memory Grows is a nonprofit organization that serves as an outreach to grieving parents, and as a resource to hospitals, clinics, hospice groups, churches and other nonprofit organizations. Retreats presented by A Memory Grows connect parents who have experienced similar losses.
Perinatal Hospice & Palliative Care: PerinatalHospice.org is a clearinghouse of information about perinatal hospice and palliative care, including many resources for parents and caregivers as well as an international list of more than 300 programs. The website was founded in 2006 by and is edited by Amy Kuebelbeck, a former reporter and editor for The Associated Press and other news organizations and lead author of A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief . She described her experience of continuing a pregnancy with a life-limiting prenatal diagnosis in her memoir, Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life. Both books are used by many hospitals and clinics as resources for patients.
Angel Names Association: The Association is a nonprofit organization that aims to ease the financial burden imposed by stillbirth, provide supportive programs and services for families enduring the trauma of stillbirth and raise money for stillbirth research.
Activities During Pregnancy and Infant Death Awareness Month
Share Walk for Remembrance and Hope: The annual event will be Oct. 19th in St. Charles, Missouri. Participants wear a T-shirt with the name of their baby on the back, and they hold a memorial service where they say the name of the baby who died. Last year, 3,000 people attended that event and 600 babies were honored.
#NeverBeStill campaign: In October, The Star Legacy Foundation honors all babies amongst the stars, including those memorialized on its website as Our Stars. Please help us remember these beloved babies by reading their stories.
Global Wave of Light : On October 15th, people are encouraged to honor the memory of babies lost to pregnancy and infant loss by lighting a candle at 7 pm in their time zone. Keep your candle lit for at least one hour to create a continuous “wave of light” across all time zones covering the entire globe.