Every story and every loss is unique. Not all aspects of life-limiting diagnoses are listed here. But these are a good starting point if you want to understand more.

• A life-limiting diagnosis is the term given for a diagnosis received for a baby where it would impact his or her life. While some professionals consider some diagnoses life-limiting even when the child lives beyond infancy, the resources on our website are for those who received life-limiting diagnoses that will ultimately lead to the death of a baby.

• Some examples of life-limiting diagnoses included (but are not limited to): Anencephaly and other neural tube defects, some Congenital Heart Defects, Limb-Body Wall Complex, Renal Agenesis, Renal Tract Abnormalities, Skeletal Dysplasias, Trisomy 13, Trisomy 18, and more.

Your friend is hurting. She needs people to love her, no matter how her grief looks. One of the most common phrases we hear from grieving moms is this: “I feel so alone.” People often avoid saying something to her out of fear that they’ll cause more pain. The grieving moms in our community often feel like people are tip-toeing around them or like they’re rushing, judging, or simply… forgetting her pain. Continuing to show up without judgment and with patience and care will be so important for the long haul.

For now, here are some ideas for you. Meet a practical need - offering something specific like setting up a meal train or dropping off a bag of groceries and toilet paper on her door step. Say something. Text her or send her a card saying, “I’m so sorry. I’m praying for you and I’m here to talk about it - or not talk about it - when you’re ready.” (It doesn’t have to be complicated!) Then pray for her. You can learn more about how to help with this free download, Part 1 of our Guide: How to Help a Grieving Friend by clicking here.

Every woman in this position is different. So let’s start with what grief is - as she’s in the midst of anticipatory grief (the loss or grief you experience while the baby is still living) while she awaits her baby’s death. 

March of Dimes gives this really helpful definition: "Grief is all the feelings you have when someone close to you dies. You may find it hard to believe that your baby died. You may want to shout or scream or cry. You may want to blame someone. Or you may want to hide under the covers and never come out. At times, your feelings may seem more than you can handle. You may feel sad, depressed, angry or guilty. You may get sick easily with colds and stomach aches and have trouble concentrating. All of these are part of grief." 

When you’re grieving, you don't have to be afraid of grieving a certain way or not grieving a certain way. No feeling is “too much” or “not enough.” Everyone grieves differently, and that’s okay. It’s important that the grieving mom allows herself to feel as she’s feeling and know that those feelings may ebb and flow over time.

I’m so sorry you’re having to ask this question. It’s not how it should be, wondering how to prepare not only for birth but also for death at the same time. We have a few recommendations for your friend as she faces this time. First, she may want to connect with a perinatal hospice and palliative care center and/or a birth & bereavement doula. Second, with their help or on her own she can create a birth plan for your baby. These two things will help her feel prepared as she advocates for herself and her baby. Third, she can plan to make memories with her baby, no matter how much time you will have with him or her. Follow her lead as you offer help.

If your loved one is planning a funeral, consider how you can help or be a point of contact for the funeral home or church. Our funeral planning resources can help her (and you) through this tender process. You could also bless her by offering to provide food, flowers, decorations, or funeral programs.

Remember - not everyone wants this kind of help. But if your relationship is close enough, you may be able to step into this sacred time.

This is such a tender question for moms whose baby has received a life limiting diagnosis. As always, there’s no right or wrong answer. For some moms, having a non-traditional shower is a welcome celebration and for others it’s too painful. You need to follow her lead.

If this is something she think might be helpful, and she’d like you to host one, here are some ways to make a non-traditional shower meaningful for her: Encourage her to only invite those she feels most comfortable with. She doesn’t have to include everyone she normally would, especially those who may not understand why she wants to have a celebration for her baby. Ask everyone to bring items to donate - examples could be books with a sticker inside saying “this book is donated in memory of (baby’s name)” or diapers to go to a local pregnancy center.

One mom in our community invited friends to bring a charm that was meaningful to them to build a special charm bracelet she could wear in honor of baby. You could make an art piece together that would be a keepsake for her in honor of her baby such as a mosaic. You could ask each guest to bring a written prayer or note to baby for a special keepsake guest book. You can spend time at the shower sharing a meal together, praying over you and/or baby, or doing anything else that feels meaningful to you.

It doesn’t have to be elaborate or complicated, and remember, no matter what she chooses to do regarding a shower, it does not dictate how much her baby’s life matters.

We asked hundreds of woman who have been where she is what they would recommend a mom bringing to the hospital for labor and delivery – we used their answers to create a comprehensive Hospital Bag Checklist to bring with you that will help to make you more comfortable and to give space for treasuring the moments you will have with your baby.

Making memories with her baby can be so beautiful and a special time of showing her baby love and care. Even if she’s not able to do as much with her baby while her baby is alive, making memories after her baby dies can still be incredibly meaningful. We have a comprehensive list included in our Ultimate Resource Bundle for a Life-Limiting Diagnosis. She can download that for free here.