Resources | Share Parents of Utah

Here, we’ve compiled many resources that will hopefully provide help and information for you and those you love. There are many organizations and websites that can give you additional support.

Links

If you have an organization or service you’d like us to refer, particularly in the Salt Lake area, please contact us for consideration.

National Share Pregnant and Infant Loss Support, Inc.
Utah Share (sister chapter serving families in Davis and Weber Counties)
Share Parents of Cache Valley (sister chapter serving families in Cache and Box Elder Counties
Share Families of Southern Utah (sister chapter serving families in Beaver and Cedar City)
St. George Share (sister chapter serving St. George)
Common Bonds 801-357-7338 (pager) Serving American Fork Hospital, Orem Community Hospital, Utah Valley Hospital and Spanish Fork Hospital. Support group is 4th Thursday every month from 7-9 at Utah Valley Hospital, Sorenson Tower, classroom 7.
Still A Part of Us (Podcast)
Smooth Stones (Podcast)

Now I Lay Me Down To Sleep aims to bring parents together with professional photographers that are volunteering their time and services to helping parents create these heirloom memories of their time together as a family.

Please contact Share Parents of Utah if you do not qualify for NILMDTS’s services. Someone will come out and take photos for you at no charge and there is no minimum gestational age to qualify.

The Angel Pics Project was created to donate photo retouching resources to the parents and families of a stillborn babies. Through this free service, skilled digital artists work with a digital copy of your original, eliminating medical equipment, removing unsightly marks and even replacing the background if desired.

Dana Klein is a local artist who can take pictures of angel babies and recreate them into beautiful pieces of art.

Pregnancy Support

Share Parents of Utah – We will come sit with you while you are in labor or visit with you via telephone if that’s what you prefer. After your baby’s birth, we will come and provide one-on-one support at the hospital or where you have delivered. If possible, we will take hand and feet molds of your baby, photos and provide other tangible memorabilia. We currently hold six support meetings per month- both in person and via Zoom.
Caring Connections (Bereavement & Support Groups at the U of U Special Perinatal Bereavement program available)
The Sharing Place offers grief support to children who have experienced a loss of a loved one, located in Sugar House.
The Bradley Center also offers grief support to children who have experienced the loss of a loved one, and is located in South Jordan.
Angel Watch is part of Intermountain Healthcare’s Maternal Fetal Medicine department and is designed to provide emotional and social support for families who may be facing a potentially life-limiting diagnosis for their unborn infant. The service is free of charge and is offered to families throughout Utah, no matter if their providers are with IHC or not. The Angel Watch professionals come to your home and offer options and choices as well as emotional support from point of diagnosis to bereavement care up to 18 months after delivery.
Canary Garden provides peer based grief support for children, teenager and their families (Not therapy or counseling). Trained volunteers and professionals oversee all activities. They meet weekly thought the school year in Orem, Utah.
Utah Infertility Resource Center – Offers Educational and Emotional support to families struggling to grow their families.

Breast Milk Donation

Have you considered donating your breast milk? Here are some local services to consider:

Suppression of Breast Milk

Do you need advice on how to suppress and stop your milk flow? Here are some tips:

Women choose to stop producing milk for different reasons, and these will influence the drying up processes. The easiest situation is when a mother is nursing a toddler who is ready to wean; the most difficult is when there is a loss of a child. In any case, the basic principles remain the same.

Just as frequent emptying and stimulation of the breast increase milk supply, emptying your breast less often and preventing breast stimulation will decrease milk supply.

When your breast feels very full, use your breast pump or hand express. Do not wait until breasts are rock hard. Express enough milk to relieve the tension and pressure in the breast, but leave some milk in the breast. Milk left in the breast tells the body to slow down (and eventually stop) production.

After pumping or hand expression, cool the breast with an ice pack. This will bring the swelling down. Put a cloth between the ice and the skin, so the ice doesn’t freeze the skin. Keep the ice on the breast, not the nipple.
Warming the breast will increase swelling and should be avoided. However, it is okay to use warmth briefly before pumping to help with let-down.
Some mothers have reported that wearing cool fresh cabbage leaves next to the skin helps relieve engorgement. You may try this if you have no allergy to cabbage.
Wearing a sports bra to keep clothes from brushing against and stimulating the nipple may be helpful. However, binding the breast is not recommended as it decreases circulation and may cause plugged ducts.
Take an anti-inflammatory medication such as ibuprofen to decrease pain and swelling throughout the first week. Adding antihistamine such as Benadryl, may be helpful in decreasing breast milk production. Note that antihistamines often cause sleepiness.
Drink plenty of water and eat food with high water content, such as soup, milk, fruit, vegetables, salad greens, and juice smoothies. Do not restrict fluids.

If you are currently producing a lot of milk, suddenly stopping and not pumping or expressing it all (“going cold turkey”) will cause severe pain and engorgement and possibly breast infection. We do not recommend it.

No one can tell exactly how long it will take your body to stop making milk. Every woman is different. Do not keep squeezing the breast just to check whether milk is still there, as this makes more milk. You wont know exactly when you stop.

If you need more help contact the lactation office and discuss with a lactation specialist.

Books That May Help

When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death, Susan O. Borg, Judith Lasker
Surviving Pregnancy Loss, Rochelle Friedman, Bonnie Gradstein
Coping with Miscarriage, Othniel J. Seiden, M J. Timmons
Empty Arms: Hope and Support for Those Who Have Suffered a Miscarriage, Stillbirth, or Tubal Pregnancy, Pam Vredevlt
Gone Too Soon: The Life and Loss of Infants and Unborn Children, Sherri D. Wittwer (L.D.S. perspective)
Ever Upward: Overcoming the lifelong losses of infertility to define your own happy ending, Justine Froelker
Life Touches Life: A Mother’s Story of Stillbirth and Healing, Lorraine Ash
Grieving the Child I Never Knew: Kathe Wunnenberg

Rights of Parents When a Baby Dies

To be given the opportunity to see, hold, touch, and bathe their baby at any time before and/ or after death within reason.
To have photographs of their baby taken and made available to the parents or held in a secure place until the parents wish to see them.
To be given as many mementos as possible, e.g., crib card, baby beads, ultrasound and / or other photos, lock of hair, baby clothing and blankets, feet and hand prints and/or permanent molds and record of weight and length.
To name their child and bond with him or her.
To observe cultural and religious practices.
To be cared for by an empathetic staff who will respect their feelings, thoughts, beliefs and and individual requests.
To be with each other throughout hospitalization as much as possible.
To be given time alone with their baby, allowing for individual needs.
To be informed of the grieving process.
To be given the option of donating their baby’s cartilage, tissue and/or organs for transplant or donating the baby’s body to science.
To request an autopsy. In the case of miscarriage, to request to have or not have an autopsy or pathology exam as determined by applicable law.
To have information presented in terminology understandable to the parents regarding their baby’s status and cause of death, including autopsy and pathology reports and medical records.
To plan a farewell ritual, burial or cremation in compliance with local and state regulations and according to their personal beliefs, religious or cultural tradition.
To be provided with information on support resources which assist in the healing process, e.g., local support groups, perinatal loss internet support, counseling, reading material and perinatal loss newsletters.

Rights of Parents Whose Baby Dies Very Early in Pregnancy

Parents who have experienced an early pregnancy loss should have the opportunity:

To be with each other during any tests, procedures or hospitalization as much as possible.
To be cared for by an empathic staff who will respect their feelings, beliefs and individual requests.
To have information presented in terminology understandable to parents regarding their baby’s status and or cause of death (if known), including pathology reports and medical records.
To be told all options and to be given the choice (when medically possible) on how to proceed when their baby has died, such as D&C, natural delivery or delivery induced by medications.
To be able to see and hold their baby and take photographs if possible.
To be given the option to name their baby if they choose to, whether or not the gender is known.
To observe cultural and religious practices the parents feel are appropriate to the situation.
To be informed of the grieving process and to be given referrals and resources that will help them through their grief.
To be offered as many mementos as possible, for example, ultrasound photos, memory box, certificate of life.
To be given information on the facility’s disposition policy and offered choices whenever possible.
To be given options regarding farewell rituals such as a hospital memorial service, a balloon release, or a private burial at home.
To receive follow-up appointments for medical tests and genetic counseling or to review lab test results.
These rights should be granted to parents no matter how early in the pregnancy their loss occurred.

Adapted from “Rights of Parents who Experience and Early Pregnancy Loss” by Perry-Lynn Moffit, co-author of A Silent Sorrow and endorsed by Share Pregnancy and Infant Loss Support, Inc. and pregnancy and perinatal loss support groups and leaders nationally.

Rights of the Baby

To be recognized as a person who was born and died.
To be named.
To be seen, touched and held by the family.
To have the end of life acknowledged.
To be put to rest with dignity.

Rights of Children When a Sibling Dies

To be acknowledged as individuals who have feelings that need to be expressed.
To be given the choice to see and hold our sibling before and after the death within reason.
To be considered in the choices parents are given, we may have opinions on such things as plans for funeral, baby’s name, etc.
To be informed about the feelings of grief in our terms, giving us the choice of a support group or counselor.
To be recognized by our society that we will always love and miss our sibling.

Children’s Grief

Download this informational brochure that will offer you insight
into the experiences of a grieving child. (Also available in Spanish)

Support for Bereaved Children

Written by Share’s former Executive Director, Cathi Lammert, RN

Most children who have a sibling that dies due to a pregnancy loss, stillbirth, or in the first few months of life will experience a grief reaction. However, oftentimes, their grief is overlooked or discounted. Parents may be so overwhelmed by their own grief that they are unable to assist their children with their issues.

Parents often ask me, “Will my child be negatively affected by the death of their baby sibling?” I have to say the answer to this question is, “Usually not, if the child’s grief is acknowledged.”

In this article, I hope to provide some direction in ways to assist little people with their big hurts and ways to validate their feelings.

In Helping Children Cope with the Unexplained Death of Infant, the author, Dr. Charles Corr, outlines four basic psychological tasks that comfort grieving youngsters. These include:

Understanding what has happened
Identifying and validating their feelings
Commemorating the life of the sibling(s) who died
Learning to live and love again.

In the following paragraphs, I will address each of these tasks and provide insight and direction from my own experiences. In assisting with the difficult journey of grieving, one should note that a child’s personality, past life experiences, developmental stage, and past reactions to loss will affect his/her reaction to the death of a sibling.

Understanding What Has Happened

Very young children ages two and under do not fully understand what has happened, but they are aware of a change in their parent’s behavior. Children sense that their lives have changed dramatically, and they may become irritable or clingy. Sometimes parents may not have the energy to meet the many emotional and physical demands of their little ones during the demands of their own intense grief. It is important to try to maintain a normal routine even if it requires the assistance of family and friends with the child’s care.

Preschool children need to have things explained in very concrete terms. We need to be careful with our words; children become confused with statements that are not literally clear, for instance, things such as “the baby is sleeping with God.” This statement may cause them to be fearful of sleep and of God. Also, children of this age do not understand the finality of death and think Heaven is a place one can visit temporarily and that the baby is coming back after a while.

Parents may become frustrated as children have repeated questions. Often simple answers will suffice as children do not want detailed explanations. As the child matures, he/she will have a better concept of death.

School-age children are often frightened by death. They may have fears of sleeping alone or being apart from their family. They may need extra reassurance and more time with you. Also, children of this age are very curious. Of course, this means they ask many questions and want more detailed explanations. All questions need to be answered and if we as parents do not respond to these questions, their peers will. Other children’s explanations may confuse and upset them even more.

Identifying and Validating Feelings

Parents have shared with me their concern about their preschooler because he or she is sad one minute and happy the next. Preschoolers grieve in spurts and the intensity is not as great as that of an older child. Often, children of this age will act out their feelings through their play. This is very therapeutic and is a way for them to positively release their feelings.

Like adults, children respond to grief in many different ways. They may act out their anger by being destructive. It is important to acknowledge this anger and frustration so they can move past it. It can be helpful for them to have a punching bag or pillow to release those feelings. It is also important to have conversations about the loss your family has experienced and how your child has responded to the death with the child’s teachers, coaches, scoutmasters, and other caregivers. It is helpful to also give these individuals some bereavement literature on ways to help children with the death of a baby.

Commemorating the Life of the Sibling(s) Who Died

A large number of people in our society believe children should not be exposed to death. Parents often are not sure if they should include their child/ren at the time of loss, at the funeral, or in the commemorating in the years to come. Parents know their children better than anyone so these decisions are very personal and what is right for one may not feel right for another. The parents of children who experience early pregnancy loss may find it more difficult to commemorate this life as often the only tangible evidence they have is an ultrasound picture.

Some commemorative ideas that families experiencing early losses have used are…
organizing a memorial service at their church
participating in a quarterly group burial service
or having a private intimate service with their family.
Others have planted a tree or designed a garden.
Some families find connecting to a specific object such as a teddy bear or a piece of jewelry for themselves and the children is meaningful.

When there is a funeral and a viewing of the baby, sometimes parents are not sure about how to involve the children. The child may or may not have seen the baby at the hospital. Talking to them about the choice and informing them what to expect at the viewing and the funeral helps the child and parent make a decision. Some children may come to just the viewing and not the funeral and some want to be a part of the entire ritual. It is always helpful to have someone there to support the children in case the parents need to leave.

Most children love to draw, color, or write poems or letters. Giving them the opportunity to create a special picture or letter to place in the casket may bring them comfort. Children loved to have their own keepsakes and may find having a special stuffed animal, piece of jewelry, baby’s handprints or footprints, and/or baby’s picture quite helpful. This connection to the baby may be a treasure for years to come.

Annual memorial services or walks held by support groups are a wonderful way to involve children. Sometimes at the time of the loss, the children may not have been a part of the initial ritual. Group memorials are opportunities to share with other bereaved families and a means to positively remember their baby. This may be the first time a child has had an opportunity to remember their sibling. At memorial services, children as well as parents can participate by writing a message on their balloon and releasing it, placing a holiday ornament on a tree or lighting their own candle.

Lastly, family rituals such as placing flowers on the grave, releasing balloons, lighting candles, planting special plants, etc. in honor of the baby on birthdays, anniversaries, and other difficult days can be helpful. Some families have found planning something special with their children during those remembrance days such as an outing to movie, dinner or even a day trip is a positive means of healing with their family.

Learning to Love and Live Again

Children will not forget their experience of having a baby brother or sister die. However, they will be able to lead productive, wonderful lives if given permission to openly mourn and have their feelings validated. They need support and understanding of their grief in order to be able to integrate this loss into their lives. As they move through each developmental stage, new questions may be asked, and they may need more in-depth answers. This does not mean they are regressing, but rather they are maturing and need to clarify some issues in their hearts and minds. Some children adjust to this loss easier and others need extra help with a support group or therapist.

In closing, your children are often your greatest source of comfort. Their openness and non-judgmental attitudes may allow you to express yourself and give permission to talk about your baby. Bereaved children have learned about grief at often a very young age. However, often with a grief experience, growth does occur and gifts such as compassion and kindness follow. These may be the best of many gifts their brother or sister has left them.

Find Additional Support through the Following Resources

Would you like to add your organization to our resource list? Please send your information to info@nationalshare.org.

Perinatal Loss Support

AMEND – Aiding Mothers/Fathers Experiencing Neonatal Death.

Bereavement Services/RTS COPE Foundation – A non-profit grief and healing organization dedicated to helping parents and families living with the loss of a child.

Miscarriage Support – Based in New Zealand.

M.I.S.S. Foundation – Based in AZ.

MEND – A Christian organization based in Dallas/Ft. Worth.

Missing Grace Foundation – helps families:

Grieve
Restore
Arise
Commemorate
Educate

National Alliance for Grieving Children – Promotes awareness of the needs of children and teens grieving a death and provides education and resources.

Pregnancy Loss Support Program – Based in NY.

HAND – Helping After Neonatal Death – Based in The Bay Area, CA.

SANDS – Based in Australia.

Support in the UK and North America

Unspoken Grief – Mission is to build and support a community of individuals and families who have been touched directly or indirectly by miscarriage, stillbirth, and neonatal loss. Working together to remove the stigma of perinatal grief by sharing our stories and increasing awareness of the lasting effects of perinatal loss.

Loss of a Child of Any Age

Bereaved Parents of the USA

Compassionate Friends

Empty Arms Heavy Heart

Support through Complicated Pregnancies

Sidelines National Support Network – Support through high-risk pregnancies.

Support Following a Tragic Prenatal Diagnosis

Be Not Afraid – private non-profit corporation whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term.

Cherishing the Journey

Isaiah’s Promise

Perinatal Hospice

Poor Prenatal Diagnosis

Support Following Pregnancy Interruption

A Heartbreaking Choice Baby Center – Termination for Medical Reasons Group

Support for Other Specific Needs

Center for Loss in Multiple Birth

CHERUBS is now CDH International – Supporting families with a Congenital Diaphragmatic Hernia diagnosis.

Children’s Bereavement Center Compassionate Passages -Pediatric end-of-life care.

Congenital Heart Defects Down Syndrome INCIID – International Council on Infertility Info.

National SIDS Group

National Stillbirth Society

The Preeclampsia Foundation

SOFT – Trisomy 18 & related disorders.

The Twin to Twin Transfusion Syndrome Foundation

Trisomy 18 Foundation Vasa Previa Foundation

Financial Aid

Forrest Spence Fund – Assist with the non-medical needs of critically or chronically ill children and their families throughout the Mid-South.

Help Us Adopt. – Financial assistance toward adoption expenses.

The TEARS Foundation – Financial assistance for funeral planning in Washington state.

Other Resources

American Pregnancy Association – Maternal and fetal health.

Angel Babies – Pregnancy loss support.

Bella Baby Photography Faces of Loss Faith’s Lodge – a place of refuge and retreat for bereaved families.

Fernside Grief Resource – Children’s resources in Ohio.

Grief Song – music by Paul Alexander.

Grief, Inc.Hope After Loss – (formerly Hygeia Foundation.)

International Council on Infertility Information Dissemination, Inc – a nonprofit organization that helps individuals and couples explore their family-building options.

Just a Cloud Away – Offers ideas to artfully preserve your baby’s legacy.

Loss of Loved Ones to Sudden Tragedy Foundation (LLOST)

Helping Hands Milk Bank – serves as a resource for donation across the US.

Molly Bears – Weighted bears in honor of your baby.

National Organization for Rare Disorders (NORD)

National Society of Genetic Counselors

Now I Lay Me Down to Sleep – Infant bereavement photography.

PLIDA – Pregnancy Loss and Infant Death Alliance.

Pregnancy & Infant Loss Remembrance Day Purposeful Gift– an organization increasing options and awareness about neonatal organ, eye, tissue, and whole body donation.

Return to Zero Center for Healing

Silent Grief

Star Legacy Foundation

Still Standing Online Magazine

Sweat Pea Project – Donates blankets to grieving parents.

Through the Heart

Touching Souls Bereavement Photography – Documentary bereavement photography provided to grieving families and workshops available for caregivers.

Wings on Wheels – Wings on Wheels (WOW) is a mobile expressive therapy program that helps support children, teenagers, young adults, families, groups, and communities impacted by illness or loss.