Focus on the Family

When Your Baby Won't Survive

by Tammy Tate, R.N., L.C.P.C.

The anticipation of a new baby breathes excitement into a family. But for some parents, joy is replaced with heartache when they learn that their much-loved unborn child may not survive. In the blink of an eye, they are thrust into a world of overwhelming grief, fear and despair.

If this is where you find yourself, this series of articles was created for you. The information provided will address your fears and offer practical resources to assist you with making decisions.

A Fatal Diagnosis

You were there for a routine prenatal visit that turned into anything but routine. The doctor’s words were shocking and completely unexpected. "Your prenatal lab results are back, and they confirm that your baby has a serious medical condition. I’m sorry, but there is no hope for survival."

As you try to focus and listen to the doctor’s explanation, you cradle your arms around your unborn baby, praying that this is all just a bad dream. You ask again, "Are you sure?" Your doctor confirms the results and then explains, "You have a decision to make – a decision to continue or end the pregnancy."

A Difficult Decision

In less than an hour you have received devastating news, and now you face a critical decision. You may feel confused and overwhelmed, with a sense of urgency to settle the matter quickly.

Stop, take a deep breath and remember: Time is on your side. Give yourself a chance to digest the news and consider all your options. Before making a decision, you may request that your health-care professional:

Your health-care professional may use other terms to describe termination of the pregnancy, such as abortion, early induction of labor or voluntary interruption. Ask your doctor to explain what procedure would be used in your case, and how it would be done.

The emotional pain and turmoil of a lethal prenatal diagnosis is very real, and it’s only natural for everyone to want to "make it better." Many feel that ending the pregnancy is the best solution mentally and emotionally for the mom. However, research reveals just the opposite: Termination of a pregnancy in light of a lethal diagnosis can carry long-term psychological consequences and an increased risk of severe and complicated grieving.


Carrying Your Baby to Term

Parents who choose to carry their baby to term no longer have to travel the road alone.

by Tammy Tate, R.N., L.C.P.C.

Many couples will choose to carry their baby to term. They see this as a way to parent their newest family member and cherish whatever moments they have before and after the child’s birth. Families call this a gift of time – time to affirm, honor and celebrate their baby’s life.

Choosing to carry to term is not an easy decision for any parent, but those who have done so voice no regret. Parents often say they would do it again to relive the time they had with their baby, whether it was 10 minutes or 10 days.

In the past, families who chose to carry their baby to term after an adverse diagnosis did so with little emotional or practical support. But today, they need no longer travel this road alone. Perinatal hospice care – a growing trend – can offer them help and guidance along the way.

Perinatal hospice is designed for parents who have received a devastating prenatal diagnosis and elect to continue the pregnancy despite the likelihood that their baby will die before or after birth. It compassionately provides such families with the clear and relevant information they need. Simply stated, the perinatal hospice team comes alongside the family as they make meaningful plans to honor and celebrate the life of their baby.

Perinatal hospice care begins at the time of diagnosis and continues through delivery and the bereavement period. It focuses on the emotional, physical and spiritual needs of everyone in the family. This is accomplished by an experienced team of physicians, nurses and counselors who plan and coordinate their efforts according to a family’s particular situation.

If you decide on this path, it is important to choose an obstetrician who will support your wishes and walk through the process with you without criticism or disagreement.


What is Perinatal Hospice?

From practical guidance to educational and emotional support, perinatal hospice is a source of help and hope for parents facing a lethal diagnosis for their baby.

by Tammy Tate, R.N., L.C.P.C.

Perinatal hospice is designed for parents who have received a devastating prenatal diagnosis and elect to continue the pregnancy despite the likelihood that their baby will die before or after birth. Simply stated, the perinatal hospice team comes alongside the family as they make meaningful plans to honor and celebrate the life of their baby, compassionately providing the clear and relevant information they need, such as:

Practical Guidance

Educational Support

Emotional Support


Coping with Grief

The healthiest way to cope with the loss of a child is to accept and embrace your grief.

by Tammy Tate, R.N., L.C.P.C.

Grief is a powerful and intense emotion, and it is especially painful when it involves the anticipated loss of a much-wanted child. There will be days when you are tempted to deny or run away from the pain, but the healthiest way to cope with your grief is to embrace it.

Be aware that women and men respond to grief differently. Women tend to cry and share their feelings openly, while men often hold their emotions inside. This difference, if not recognized, can create frustration and distance between partners. Open communication and the ability to accept and respect one another’s grief response is the key to maintaining a healthy relationship.

Ways to relieve stress:

Find spiritual comfort by praying, reading encouraging Scriptures, and by talking with a friend, pastor or spiritual advisor.


Helping Other Children Through the Loss

Many children can sense when something is wrong, so don't be afraid to tell them what is happening.

by Tammy Tate, R.N., L.C.P.C.

Sharing the news of the baby’s diagnosis with your children can be difficult. Kids are great observers, and they easily sense when something is wrong. So it is important to share with them what is happening. Withholding information in an effort to protect them may cause them to feel an overwhelming sense of guilt. They may feel they have done something wrong to cause your sadness.

Guidelines for sharing information with your children:

Other ways to support your children:

More and more families are encouraging siblings to become an integral part of the experience by letting them:

As you begin this journey of a lifetime . . .

The story of your baby’s lifetime has already begun. Though the emotional pain cannot be underestimated, this journey of love and loss will change your heart and life forever. Perinatal hospice can help you find hope in the midst of your grief and give meaning to your journey.

Many parents find comfort and hope in knowing that their baby will know only tender care and love during its brief time on this earth. And at the moment of its last breath, they release their cherished baby directly into God’s loving arms. May you find this same comfort and strength throughout your journey as you honor the life of your baby and build memories to last a lifetime.


How Family and Friends Can Help

If someone you know is facing the loss of a baby, don't retreat. They need to know you care.

by Tammy Tate, R.N., L.C.P.C.

Perhaps someone you know and love is facing the impending death of their baby. Naturally, you want to be very sensitive to their pain. Families often feel isolated and abandoned after receiving a lethal prenatal diagnosis. They may feel awkward trying to explain their baby’s condition and therefore pull away in an effort to protect their emotions.

As a family member or close friend, you may feel equally uncomfortable. You are afraid you will say the wrong thing or create an awkward silence. These situations can sometimes cause you also to retreat, but don’t. Your loved ones need you. They want to know that you care about them and their baby.

Simple ways to show you care:


Next Steps

Additional information and resources for when you face an adverse pregnancy diagnosis

Popular questions on this topic:

Recommended Resources

Journey of a Lifetime, by Tammy Tate, R.N.

A guidebook for parents who have received a terminal prenatal diagnosis. From creating birth plans to ideas for special keepsakes, this guide is a valuable resource to help parents make meaningful plans to celebrate and honor their baby’s lifetime. The author founded Carolina Perinatal Support, which provides a bridge of support for families experiencing an adverse prenatal diagnosis that will likely result in a preborn or newborn death. Through practical guidance, education, and compassionate support, they seek to relieve emotional suffering while preserving the dignity and integrity of the family as they make meaningful plans to honor the life of their baby. www.carolinaperinatal.com

String of Pearls

This organization offers practical guidance and compassion to families who find themselves on the darkest road they have ever walked. Founder Laura Huene, BSN, RN, has walked this road herself and now walks alongside other families as they make plans to honor their baby’s precious life, saying hello and goodbye all in one breath. www.stringofpearlsonline.org

GriefShare

A grief recovery support group where you can find help and healing for the hurt of losing a loved one. Visit www.griefshare.org

PerinatalHospice.org

A helpful website for families and health care professionals that offers a list of hospitals and perinatal hospice or perinatal palliative care programs for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth.

Now I Lay Me Down to Sleep

At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are presented to the families on an archival DVD or CD that can be used to print portraits of your cherished baby. This network of more than 7,000 photographers in the United States and 25 countries graciously volunteers their time and offers their services at no cost. For more information, visit http://www.nowilaymedowntosleep.org/. Photos in this booklet are used with the gracious permission of families whose photos were taken by photographers volunteering their time and expertise through NILMDTS.

Additional Resources

More comfort care and helpful resources for an adverse pregnancy diagnosis.