Infant Loss Resources

As a mother of four children — three living — I found that our website was lacking information that could help others who have also experienced loss. I have had various experiences with pregnancy. My oldest daughter, Bailey, was born 6 weeks premature and spent 22 days in the NICU. My next pregnancy was a miscarriage at 8 weeks. My second daughter, Kenzi, was born sleeping when I was 6 months pregnant. She was born missing her lower left arm due to amniotic band syndrome. My oldest son, Kamden, was a C-Section because he was breech at 38 weeks and my youngest, Karson, was a repeat C-Section born at 37 weeks and 3 days. None of my pregnancies were textbook, and none of them were easy. I found support for each of my experiences in different places. The March of Dimes helped me after I brought Bailey home, and I have been an avid supporter of them ever since. I wish I knew more about the March of Dimes when Bailey was in the NICU. After the loss of Kenzi, I found that reading several of the text that are listed in our resources helpful for me. I also found support through organizations such as New Beginnings and A Walk to Remember Foundation. I wish I would have known about other resources that we have listed and that is why I am sharing many of them with all of you. A pregnancy is never the same after the loss of a child. Not one minute from the moment the pregnancy test says positive is easy until your child is in your arms. There is always the worry that something will go wrong and that this child will not come home with you. I experienced that with both pregnancies after Kenzi. I think that is important for people to realize it’s never easy after a loss. A subsequent pregnancy does not replace the child(ren) that have been lost and they never will. Each child(ren) are unique. I am and will always be the mother of four: Bailey, Kenzi, Kamden and Karson. By adding this page to our website I wanted to share some amazing information with our readers. I do not think people know enough about infant loss and how often it does happen.

Birth defects are generally referred to as abnormalities of structure, function or metabolism (body chemistry) present at birth that result in physical or mental disabilities, or death. Every 4 1/2 minutes a baby is born with a birth defect in the United States. In 2006, birth defects accounted for about 1 in 4 infant deaths in Colorado. From: http://www.marchofdimes.com/peristats/tlanding.aspx?dv=lt®=08&top=16&lev=0&slev=4

Stillbirths are the deaths of unborn babies. In the United States, a baby who dies after 20 weeks of pregnancy is considered a stillborn.

One in every 150 births results in a stillborn. This number may be higher due to lack of consistent standard of stillbirth reporting. Worldwide, 4.5 million stillbirths occur each year. 12,000 women deliver a stillborn each day. (World Health Organization) In the U.S., of the 4 million births a year, there are 26,000 stillbirths. 70 women deliver a stillborn each day. (National Institutes of Health) Stillbirths per year roughly equal all infant deaths during first year of life. (Centers for Disease Control and Prevention) African-American women have more than twice the risk of stillbirth than that of white women. African-American women 35 years and older have a risk of stillbirth 4-5 times higher than the national average. 60% of fetal deaths happen after 28 weeks gestation. The majority of stillbirths occur at or near full term. Many stillbirths at term happen in otherwise healthy, low-risk pregnancies.

70 lives a day are lost to stillbirth compared to 7 lives a day lost to SIDS. That is a 10 fold difference.

The cause of death for about half of all stillbirths is undetermined or unexplored. There are no standard guidelines for autopsies and data collection when stillbirths occur. Some of the most common contributing factors for diagnosable stillbirths are:

Bacterial or viral infections
Birth defects and abnormal chromosomes
Placental problems such as bleeding behind placenta “placental abruption”
Umbilical cord knots, twists, and compressions
Intrauterine growth restriction when babies are not growing appropriately

Unexplained stillbirths are not unexplored. An unexplained stillbirth happens when thorough postmortem evaluation and autopsies are done and no definitive cause is found. One fourth to half of stillbirths is unexplained. Unexplained stillbirth is the most common category of stillbirth for pregnancy at 28 weeks or later. Fetal deaths do not happen suddenly. Studies show that 50% of unexplained stillbirths are associated with intrauterine growth restriction, where babies are not growing at an appropriate rate; thus there may be a window of opportunity for intervention.

Rowan Tree Foundation Website: www.rowantreefoundation.org About Rowan Tree Foundation: Rowan Tree Foundation is a 501(c)3 nonprofit organization that is powered by 100% volunteer staff. Our mission is to provide ongoing support and resources for families who are coping with the devastating loss of a much-loved child. We carry out this mission by offering online peer support forums, outreach services, memorial events, education, and awareness opportunities for families dealing with the loss of a child during pregnancy, stillbirth, or infant death. Our vision is of a world where pregnancy and infant loss is treated openly and bereaved families are given the support they need, free of charge. We envision a system that responds to the child’s death by providing the bereaved with resources and information to know what services are available to them in coping with their loss. We hope to help change the way child loss is addressed so that parents have access to compassionate care that respects the humanity of their child, the gravity of the loss, and the lifelong impact that the loss of a child has on the family. String of Pearls Website: http://stringofpearlsonline.org/ About String of Pearls: Mission Statement for String of Pearls: String of Pearls was created to provide a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth. The path between grief and hope is a difficult place to walk; our desire is to provide guidance, compassion and practical suggestions as plans to honor the life of pre-born babies are crafted. Each life has a story worthy of telling and we are here for support as stories are lovingly written. A New Beginning A New Beginning is a 5 week support group (we typically meet every other week) for moms going through a subsequent pregnancy after a loss. The group is held at SwedishMedical Center and is free of charge. The contact number is 303-788-5677. Additional Resources for families who have lost and for those who are supporting families who have lost a child. MISS Foundation Website: www.missfoundation.org About MISS Foundation The MISS Foundation is a 501 (c) 3, volunteer based organization committed to providing crisis support and long term aid to families after the death of a child from any cause. MISS also participates in legislative and advocacy issues, community engagement and volunteerism, and culturally competent, multidisciplinary, education opportunities. Meetings are in Denver and Parker each month. Visit their website for more information on meetings. First Candle Website: www.firstcandle.org/grieving-families About First Candle: No matter how deep your grief and how great your pain, remember that you are not alone. First Candle, along with others who have traveled this road before you, are here to help you through the difficult time following the death of your baby. Held Your Whole Life Website: https://heldyourwholelife.com/ About Held Your Whole Life: > Asher Finn Barth was born on October 9th, 2011. We lost our precious “little monkey” at 40 weeks gestation due to a rare blood clotting disorder in Larisa that was undiagnosed at the time. Asher’s placenta developed tiny blood clots that eventually cut off life support to him. He could just not hold on any longer and his heart stopped on his due date. We founded Held Your Whole Life to parent Asher. Our mission is to serve bereaved families who have experienced the loss of their baby(s) in-utero, whether through miscarriage or still birth. These precious lives never had to experience suffering or sorrow, only love. It is such an inspiring gift to our babies to have held them their whole lives. So many of us understand the immense pain and anguish of giving birth in silence and having our babies torn from our lives, leaving us with broken hearts, emptiness, and shattered dreams. We exist to give recognition to the babies born in silence when the world wants to say they were not babies since they did not breathe air. We hope that by gifting a keepsake necklace with your beautiful baby’s name on it, you will know that your child counted. We hope that you will find comfort and healing through those of us who have survived, and share your baby’s beautiful story so that we may remember them. > ~The Barth Family, Jim, Larisa and Kamari Morning

These are books that I have read and found to be helfpul in my times of loss and healing.

About What Was Lost – 20 Writers on Miscarriage, Healing, and Hope About What Was Lost is the only book that uses honest, eloquent, and deeply moving narrative to provide much-needed solace on the subject of pregnancy loss.
Pregnancy after a Loss: A Guide to Pregnancy after a Miscarriage, Stillbirth, or Infant Death – Carol Cirulli Lanham After a miscarriage, a stillbrith, or the dealth of an infant, well-meaning friends and family often advise. “You can try again.” But for a woman who has experienced such a heartbreaking loss, conceiving another child can be fraught with mixed emotions. Along with joy and hope come worries, questions, and often, renewed sorrow at the memory of her previous pregnany. This guide, filled with up-to-date medical information and written by a woman who herself experiences a successful pregancy after the loss of her first baby, can help.
Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth and Infant Loss – Ann Douglas and John R. Sussman, M.D. Written especially for parents who have lost a child. Trying Again lessens the uncertainties about pregancy after miscarriage, stillbirthy, or infant loss by providing the facts to help you determine if you and your partner are emotionally ready for another pregnancy. It also imparts essential advice about preparing and planning for another baby when you decide the time is right.
Big George – The Autobiography of an Angel In a neonatal intenstive-care center, two newborns are lying side by side, fighting for their precous lives. Their parents are from different economic backgrounds, but they’re drawn together by their infants’ need for love. Little does anyone know that Big George, who weighs a mere on-and-a half pounds, is an angel in disguise – a very, very special angel who has been sent to Earth by his Father on a mission of the greatest importance…
Mommy Please Don’t Cry… – Linda Deymaz In a moment’s time your world shatters… Time stands still and darkness overwhelms the soul. Our stories are different but our pain is the same. We are mothers who will forever grieve the loss of a child. Yet beyond the darkness, there is light and comfort for our broken hearts. Mommy Please Don’t Cry is a book of hope and healing. Adorned with beautiful illustrations, the gentle, poignant words express the love of heaver through the eyes of a child.
The Christmas Box by Richard Paul Evans So begins The Christmas Box, the touching story of a widow and the young family who moves in with her. Together they desicer the first gift of Christmas and learn what Christmas is really all about. The Christmas Box is a Christmas story unlike any other: Merry Christmas.
I’ll Hold you In Heaven – Jack Hayford With compassionate answers for your troubling questions, God’s Word shines with hope in the dark night of human pain. God showed His tenderness when David lost a child he had with Bathsheba. In his pain and grief, David spoke the word of revelation – the ressuring word of God’s truth – saying, “I will go to but he will not return to me” (2 Samuel 12:19-23).

Questions?