Resources

How to love and support a mama who 's baby has a life-limiting, terminal or fatal diagnosis | The Morning: Community & Resources for Women who have experienced pregnancy or infant loss | www.themorning.com/advice-for-friends-family-1

I asked 3 specific questions to real women who have experienced a life-limiting diagnosis with their baby. Questions about what they would tell someone who has a friend or family member walking through a similar reality — a reality where mama is carrying a baby that she will deliver, and then have to say goodbye to.

I asked these moms to share their advice and wisdom about how to best love and support a mama walking through a similar reality.

Here’s what they had to say.


How can they best love & support her?

Just be there. Ask questions. Talk about it. It hurt to have friends who tried to ignore it. When you don’t know what to say a hug and an “I’m sorry. I love you.” work wonders. Kristyn

Reach out consistently to let her know you are available if she needs to talk or just to sit with her. Use things like Door Dash to send her favorite coffee or tea on appointment days. Offer to watch her kids or bring a meal on appointment days. Those days are often long and exhausting! Brooke

Just be there and listen. Don’t give advice, don’t try to fix it because it can’t be fixed. Just listen to all the sadness, anger, and grief. Sit in the pain and just be. Chelsey

Don’t forget – don’t forget mother’s day, due dates, holidays. Don’t forget to tell her your thinking of her and baby during these times… there’s nothing worse than feeling like your baby is forgotten. Stephanie

Just be there for her. Don’t offer sayings like “everything will be ok.” Katie

Be sad with her. Don’t try to cheer her up. Not at first. Jessica

Check in with her often. One meal and then checking out feels so little, as if the ground giving way beneath her feet, swallowing her up, isn’t even life-changing. Frequent checkins, little, short visits to just talk, just being there. Honoring her child by doing something or giving a gift in the name of the child would be important because his or her name will never be used again really. At least close friends can try to keep her child in the present tense. Ingrid

Show up even when parents say they don’t need help or want anything. Bring meals. Gift cards for meals or a meal service. Take her a cup of coffee or for a pedicure to get out of the house. Show up and clean her house. Do her dishes. Fold laundry. Everything is overwhelming and thinking of “what you want” can be difficult. Amy

Let her know you’re there for her. There is no “right thing” to say and many things people say with the best intentions are hurtful. Saying, “I’m so sorry” can go such a long way. Pray for her and don’t forget to reach out to her husband too. Erica


What was most meaningful and helpful to you during your pregnancy?

Friends who found little ways to support me…a card in the mail, a text to say they cared, I even had one friend fly in to just help me pack my hospital bag and organize my paperwork. One friend also threw me a Baby Blessing where we celebrated my son’s life right now. Kristyn

One of the most meaningful things was when my family planned a “Celebration of Life” party instead of a baby shower. They gifted me with things like a prenatal massage, a gift certificate towards a 3D ultrasound, and personal items like comfy slippers for the hospital. It was so nice to be celebrated and for his life to be honored in that way. Brooke

Tell them that whatever decision that they make for their baby is the right one. Be supportive and, again, just listen. This isn’t the time to put in your two cents or say what you would do, because this isn’t about you. Also, don’t say that everything will be ok. It is ok to be realistic about this incredibly sad and heartbreaking situation. This is a life, their baby’s life. The last thing I needed was people telling me that it was all going to be ok when we all knew that it wasn’t. Chelsey

Practical things like meals. Stephanie

Not having to do hard things alone. Jessica

Lots and lots of rest so if she has other children, childcare help. Ingrid

People showing up and helping me with practical things. Meals, cleaning, groceries. After getting the diagnosis, it was hard to get the small things done. Amy

My mom and sister bought me a few simple pieces of maternity clothes. That was so hard because I didn’t know how long I would even be pregnant. They also helped me prepare when I lost my daughter and had to be induced by buying pads, underwear, and all the other things that are devastating to buy when you know you won’t have a baby with you. Ericca


What was most meaningful and helpful to you following your baby’s birth?

When people remembered important dates. My son was stillborn on August 3, so for the first year a few friends always texted me some extra love on the 3rd of every month. It made me feel that both myself and my son were not forgotten. Kristyn

Friends and family took different aspects of the memorial service and did them for me. Things like ordering the food or printing the programs. It was so helpful to not have everything on our shoulders. Brooke

Say their name. Don’t let them be forgotten. Reassure that baby’s parents that their life will always hold meaning. Also, don’t just fall off the face of the planet after the baby is here and the service takes place. Check in periodically and just ask how they are. These were the people who I knew cared and would be there for us whenever we needed it. Chelsey

Counseling. Stephanie

Our son died 6 hours after birth. We thought he would be a candidate for surgeries but he was too sick. So just being surrounded by family and friends and having meals brought to our house was very helpful. Katie

Acknowledgement. Knowing people saw and aware of how hard it felt. Empathetic friends or women who had experienced something similar letting me talk and cry. Ingrid

When people asked to see her picture and know everything there was to know about her short life. Jessica

Many people mailed cards with sweet words of encouragement. Opening them and reading them helped me to know our daughter was remembered. And friends and family just showing up and sitting in the couch and letting me cry and grieve with them. Amy

My mom came over every day when my husband had to go back to work. Having people just sit with me and be okay with me being sad. Some people made food which was nice. Acknowledge my baby. Say her name. It’s awkward and hard but please mention her when you see me after. Erica

A Few More Words of Wisdom from Mamas Who Have Been There

I appreciated people asking me about baby James. I know it can be scary to bring up something so sad, but talking about him made me happy. It still does…. and if I cry, it’s ok. If you cry, it’s ok…. actually, it’s better than ok… it’s wonderful. Have friends cry WITH me made me feel more understood and not alone. katelynjames

Please don’t compare situations. One of the most frustrating things for me was when people tried to compare situations to “help”. kily42

Please please please don’t spend the entire conversation talking about the pregnancy and the baby. Mom’s in this situation also need to just have stimulating conversation that you would have with them even if they weren’t in their situation. Talk about the date you had, share the funny thing you witnessed. There is a way to do this without being insensitive. This will help a momma’s brain to refresh from being in constant survivor mode and mom will feel the healthy effects of this later as she is grieving. elizabethannbraswell

My parents still mention him when they get asked how many grandchildren they have. It makes my heart full to know he was/is loved and remembered even though he only lived a few short hours.During my pregnancy it was nice to have company to keep me distracted and even to watch my older son if I just needed time to cry and process things on my own. car01ynne

Be present. Keep showing up—especially over the long haul. Don’t let “not knowing what to say” or feeling uncomfortable get in the way. Just be with them in the pain. Lament together. Give them permission to grieve. Grief is complicated but your presence doesn’t have to be. Just keep showing up. sarah_westfall

Remember acts of service — fill their pantry, wash their dishes, mow their lawn, run small errands — go a long way. Picking up the responsibilities she may not be able to handle will help so much and show your support. Do it with a kind heart that is open to all her fears. Mama is in overdrive– nonstop survival mode for herself and the little one. auroras_hope

People tended to move on after about three months, which is expected. But I felt so so lonely at that point. I think to keep coming, keep talking about it, keep asking after the three month mark is huge. It makes it feel less like an event and more like a life changing experience, which it is. melissast.louis

Acknowledge that they are grieving. Whether that means saying something or simple sitting in the dark with them for a moment. There are no words that can take the grief away, but do not let the absence of no words prevent you from saying something. They may not want to hear uplifting quotes that but saying anything is better than nothing. I found that often just a silent hug spoke the most. caridawn1203

When friends/family were ‘just present’ with me, in the moment, silent, or laughing over coffee — wherever that looked like. Grief is so unpredictable and you can’t plan or organize it into a box. It reminds me of the story in the book of Luke about Martha and Mary. Our culture can get so caught up in ‘doing’ things and helping in those very tangible ways (don’t get me wrong — they are amazing blessings). We get so caught up in being a ‘Martha’ when maybe all the grieving parent really needs is for us to be present and be in mourning with them. Sometimes it’s best to be more like Mary.

And please acknowledge my loss even if it’s scary and makes you uncomfortable. I had great friends not say a single word to me about my babies in Heaven. It made me feel so invisible. It makes my heart burst when people mention my babies and call them name. It may not happen often, but when it does it brings me so much joy. rebekahkemper

It’s ok to acknowledge that this is hard & sad. Sit with me in that. You can’t fix it. Don’t try. There are no right words. Don’t try. Just sit with me, hold my hand, cry with me. Be with me in the sadness. jamieervin


ADDITIONAL RESOURCES TO HELP

community and support for women who have received prenatal terminal diagnosis | themorning.com/community
practical & helpful resources for women who have received prenatal terminal diagnosis | themorning.com

Real Women Answer these Questions:  What do you wish you would have known about this journey? What is one thing you would tell another woman who just received a similar diagnosis? What would you tell her to expect? What hope would you give her? What was most helpful to you? Any advice or wisdom that […]

Continue Reading