Life-Limiting Conditions: Help Navigating Resources

Life-Limiting Conditions are conditions for which there is no reasonable hope of cure and from which children will likely die.

Featured Support Organizations

Supporting Families who have chosen to carry a child with a life-limiting diagnosis.

You may have learned your unborn baby has a severe medical disorder, you’ve lost a baby, or there are complications in your pregnancy. You are likely scared, anxious and wondering; what do I do or where can I go? Right here! 

Our mission is clear: encourage and equip medical practitioners to provide an evidence-based rationale for defending the lives of both the pregnant mother and her unborn child.

The Mission of The National Catholic Bioethics Center is to provide education, guidance, and resources to the Church and society to uphold the dignity of the human person in health care and biomedical research, thereby sharing in the ministry of Jesus Christ and his Church.

Verity’s Village exists to support families who receive a life-limiting diagnosis for their babies, who feel overwhelmed by the thought of starting a journey they never asked to take, who feel swallowed up by their circumstances and wonder if they will ever feel normal again…if it’s possible to ever feel JOY again.

Additional Support Organizations

If you are here because of a prenatal diagnosis that indicates your baby may die before or after birth, we are so sorry. Perhaps you are considering continuing your pregnancy and embracing whatever time you may be able to have with your baby, even if that time is only before birth, while your baby is cradled safely inside of you. Please know that support is available.

We are so sorry you have received this diagnosis about your baby in utero. Know right now, your baby is alive and you are mothering your child. You have many options and we would love to listen to your plan and help in any way. Walking through life and death simultaneously should not be done alone. Let us come along your side.

When you’re facing a prenatal diagnosis of a life-limiting condition, the decision to carry a pregnancy to term is often accompanied by a range of questions and emotions. We are a non-profit organization dedicated to helping you gather the support, tools, and resources necessary to navigate the months ahead.

Leaves in Time is a 501(c)3 founded by Liz & her husband Brian. This resource is for those facing a genetic or physical diagnosis during pregnancy that will likely lead to losing baby before or shortly after birth. We provide care and support during pregnancy, birth, and postpartum. 

Fathers

This pocket-sized book is for men who experience the death of their infant child — whether it be miscarriage, stillbirth or early infant death. Meant to be a guide during the early hours and days after finding out the news of their baby's death, the book offers suggestions for communicating with medical caregivers, offering support to their partner, telling the news to other children, making funeral arrangements and taking care of themselves in a time of crisis. It goes on to talk about effective communications during the weeks and months following the loss, going to a support group, returning to the workplace, and the issues surrounding a subsequent pregnancy.

Through personal testimony, the author details the experience of fathering a baby with a poor prenatal diagnosis. The author invites the reader to follow his journey, from learning his wife is pregnant, through their experiences as a family with their unborn daughter’s poor prenatal diagnosis, welcoming their baby girl at her birth, and ultimately finding peace in her early passing. Perinatal peer support is discussed and encouraged, drawing attention to the needs and concerns of the babies, women, and families who may not know to seek help in a similar situation. Great honor is given to the beauty and sanctity of life from the perspective of a father with a sick unborn child. National Catholic Bioethics Quarterly 14.1 (Spring 2014): 31–37.

As the father of a son with special needs, I felt compelled to share my son Jonathan's story by starting the blog "If You Have a Pulse".  It's an honest journey of life and death moments, and miraculous second chances.  Through words, photos and video, I hope it's a powerful way to share knowledge, experiences, and the highs and the lows of our life raising such an amazing little boy. 

Heartbeat Bears

Many families chose to memorialize their child by recording their heartbeat sound in a bear before birth which becomes a memory and comfort item if the baby dies. 

Capture Your Baby's Heartbeat in an Adorable Keepsake!

Heartbeat Bears, designed by Build-A-Bear Workshop and Catherine Cares, are provided to families of babies and children who receive a life threatening diagnosis. Our bears come with a recording device within a pocket on the side of the bear. For babies, when a life threatening prenatal or newborn diagnosis is given, our hospital partners record the baby’s heartbeat on the device during an ultrasound.

Build a Bear also works as a Heartbeat bear. Simply ask for the recording device to be left outside the bear and the bear to be stuffed but unlaced. Once the heartbeat is recorded, you then stick the recording device back into the bear and lace it up right in the ultrasound room and then hand it to the mom. 

Birth Supplies

Many families have the option of memorializing their child while in the hospital. Alicia’s Angels designs bereavement rooms for this purpose. Cooling Cradles allow a baby’s body to be cooled down after death, which gives the family more time to say goodbye before the body begins to break down. Memory keepsakes can include imprints of the baby’s hands or feet. Your Parent Care Coordinator could also help you navigate these resources or may provide you with more supplies directly.

We create beautiful homelike living spaces within hospitals, for families whose babies will not survive, to spend precious time with their children away from the medical environment. A place to create a lifetime of memories from brief precious moments.

AngelPics was created to donate photo retouching to the parents and families of a stillborn or newborn who didn't make it home from the hospital. Our skilled artists are able to remove medical equipment, marks and bruising, and even replace backgrounds.

Simply put, a Caring Cradle gives grieving families time they will never have again with their child.

Providing grieving families time through the use of the CuddleCot is internationally encouraged by midwives, bereavement practitioners and academics. Time allows the family to form an important bond with their baby and helps them in dealing with their loss.

To provide a small act of kindness when families need it most. At Little Angel Gowns, we hand sew burial attire for babies made from donated wedding gowns.   We work with hundreds of hospitals and funeral homes, and individual families, to provide this special service. It is our mission to create comfort for the families that have suffered this great loss. 

Providing the gift of remembrance portraits to parents experiencing the death of a baby.

Our neonatal and pediatric death resources are beneficial to physicians, nurses, social workers, chaplains, and other providers as they care for families when their baby or child dies. These resources will be especially helpful to the staff in the NICU, PICU, pediatric palliative care, and the emergency department.

FREE Support for Grieving Families from Tiny Treasures You are not alone.  Get the hope and help you need.

Financial Assistance

We provide financial assistance to families dealing with high-risk and complicated pregnancies, premature birth and NICU stays, or loss.

It is our mission at the Olivia Raine Foundation is to compassionately offer financial support for expenses relating to the funeral arrangements to any family who has had an infant pass away for any reason. 

You can request funeral assistance. 

The TEARS Foundation seeks to compassionately lift a financial burden from families who have lost a child by providing funds to assist with the cost of burial or cremation services. We also offer parents comprehensive bereavement care in the form of grief support groups and peer companions.

Burial Caskets

Our neonatal and pediatric death resources are beneficial to physicians, nurses, social workers, chaplains, and other providers as they care for families when their baby or child dies. These resources will be especially helpful to the staff in the NICU, PICU, pediatric palliative care, and the emergency department.

Heaven’s Gain Ministries mission is to provide for the physical, emotional, and spiritual needs of families experiencing pregnancy loss: before, during, and after the delivery of their precious baby.

Life is full of mystery. One of the greatest and most painful mysteries of all is the death of a child. The monks at New Melleray Abbey offer no easy explanation for so grievous a loss.

We receive many letters and emails from people all over the world that want to build a casket for someone they love. We recognize this as a lasting gift that we can give you and you can give to the one that you so want to honor with your last gift to them.

A Note About Support Organizations that Work with Hospitals Directly: 

Even if a group only serves a hospital instead of individual families, you could still try to connect them with your hospital.  Our Parent Care Coordinators can help you with that!

Facebook Groups

PrenatalDiagnosis.org wants to provide you with a wide range of support including links to helpful Facebook groups. However,  we cannot verify the exact content that you will find on Facebook pages and groups, which vary widely by moderator, participants, and topics. 

This is a group for parents who have been given a fatal diagnosis during pregnancy. This group has been created to provide an outlet for mothers and fathers who have made the decision that despite this fatal diagnosis have decided to carry their child to term. This may be a way of communicating with parents who have suffered the same loss or a way to share your story. Also as a group to lean on if you are currently going through the journey of carrying to term. We are here for whatever you may need. 

This prenatal support group is a safe place for parents who have received a life-limiting diagnosis for their babies to receive information and resources. We seek to provide encouragement and assistance for your journey, addressing the mental and emotional anguish these complications can cause as well as practical answers to your questions about interventions at birth and beyond.

General Readings

A guide for Decision-Making after Receiving a Difficult Prenatal Diagnosis Regarding Your Baby.

This book is written for those who have heard the shattering words "Something is wrong with your unborn baby." This reflective resource is intended to embrace parents at this difficult time with encouragement and insight.

How do you move forward after you receive an unexpected diagnosis for your baby? How do you deal with the devastation and chaos? Most importantly, how do you prepare for the range of possibilities you now face? From Diagnosis to Delivery is a compassionate, invaluable tool for parents who are facing a life-limiting diagnosis for their unborn child.

Life-Limiting Condition Readings

A Gift of Time is a gentle and practical guide for parents who are (or are considering) continuing their pregnancy knowing that their baby's life will be brief. When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, a growing number of parents are choosing to proceed with the pregnancy and to welcome their child into the world. With compassion and support, A Gift of Time walks them step-by-step through this challenging and emotional experience—from the infant's life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death.

Inclusive and comforting. The last story I wish I could have read to my daughter before she entered heaven. A story filled with enchanted endurance gracefully given by a caregiver and the lesser known tail of lovingly letting go.

For the Love of Angela is an inspirational memoir in which Nancy Mayer-Whittington recounts her experience of carrying and delivering her daughter, Angela, who died shortly after birth. The author focuses on how her Catholic faith saved her in these circumstances and how her relationship with Angela has changed and enriched her life. "This inspiring story of a mother's love for a child who could not live long dramatically reveals the feminine gift for self-sacrifice, for giving life no matter what the cost, and for affirming the value of each person, no matter how tiny. Mayer-Whittington's heroically feminine response to life is the true feminism the world so badly needs." Mary Ellen Bork, Catholic writer and speaker.

This compact book covers ideas from the memorial service to talking together, information on how men and women grieve differently, and how to strengthen your relationship after the loss of your baby. Authors: Marcie Lister and Sandra Lovell

I Will Carry You is a powerful story of ultimate loss — a parent's loss of a child — interwoven with the biblical story of Lazarus, helping those walking through the difficult seasons of life to mourn and still have hope.

Salchert has eight biological children — but is "Mom" to many more. Providing comforting love, the former perinatal bereavement nurse adopts hospice babies — children left to live and die without a family — and cares for them until their last breath. Her moving story shows that we can do all things through Christ who strengthens us!

A comprehensive guide for parents who are unfortunately given the bad news regarding their pre-born child with either an ultrasound or laboratory diagnosis of a potential or real congenital problem. It explains to them both secular and religious faith-based strategies on how to emotionally, psychologically and spiritually prepare for and assimilate the multiple and various emotions they will have to reconcile, as well as how to deal with the mixed messages they will be receiving from family members, friends, physicians, and their own inner conflicting feelings.

Waiting with Gabriel is a first-person account of continuing a pregnancy following a life-limiting prenatal diagnosis of an incurable heart defect. It is a story about medical decisions and navigating a new path of preparing simultaneously for birth and death, embracing a baby's life from conception through natural death — and beyond. It is a story about life and love in the midst of letting go.

A guide for parents whose child dies before birth, at birth, or shortly after birth.

Stretched in Love: Hospice of the Womb describes one mother's experience with perinatal hospice and how her Catholic faith offered her consolation and strength during the bereavement process.