After the Diagnosis: A Love Letter

To The Mother Who’s Learned Her Baby Won’t Live
(Advice From Carry-to-Birth Families)

There are few days as vivid as the day a doctor tells you that your baby will likely not live outside your body. The colors of the room, the smell of the hospital soap on your hands when you bring them to your face, the sound of a phone ringing down the hall, the crack in his voice when he says, “I’m so sorry”, the way every specialist in the room has a face that just blurs through your tears.

In a perfect world, these would be our worst days… just the agony we feel when the probable outcome- a prognosis of death- has been put on the table.

But this world is not perfect and so, for many of us, our worst days do find themselves taking place simultaneously with our best days- the days our very loved but sick children are born.

As women who have been in your shoes, and as a part of the majority whose babies with fatal diagnosis do leave us, we want to share our hearts with you.

First of all, we are sorry.

We don’t want you to be here.
We don’t want anyone to ever have to walk the path of child loss, and we pray for an end to all terminal birth defects.

But since you are here, we are with you. Our hearts break with you. We will love and cherish your child with you.

We will walk beside you in your anticipatory grief. We will rejoice with you when your baby arrives in your arms. We will mourn with you when you have to say goodbye.

And we will be here in the sacred dance of pain and joy that follows. We are a community of sister-mamas that have nothing but open arms for you as you walk this unimaginable path. That’s all that love can do- love for our babies creates this tight knit group of people that can relate and love on each other.

•Take one moment at a time. Try to feel and treasure the kicks and movements when your baby is in the comfort of the womb. Don't be afraid to plan for the possibility of your baby coming home ... even though my son didn't make it home, having baby things in the house after he passed was actually comforting. – Aileen

•Make memories with your baby. Some ideas are to keep a journal of your pregnancy, see a favorite sports team together, or take maternity photos. When I met my daughter, I remember thinking that every second of heartbreak over her condition was worth bringing her into the world, and I continue to be amazed by the way that she continues to inspire and change lives. - Kristina

•If you want to pray for the best, pray, have others pray over you. It's okay not to tell strangers your little ones diagnosis and just find joy in being the regular pregnant lady. It's okay to have a shower and let friends love you. Your spouse may have a different approach, that's okay. I was told to terminate and that NO ONE EVER carries to term with this diagnosis, not true because I did. It’s okay to be scared. It's okay to hold your baby after they've passed and its okay to stop holding them soon after. You will find the strength to do what's right for your situation in the moment. Talk to the Lord, and meditate on the scriptures that speak to you. Listen to worship music. Finally, see a counselor type now and through the first year after. –Bethany

•No child is defined by his or her diagnosis. Make memories of your journey while you carry your child. – Jenna

•Be hopeful for a "miracle ", but also be prepared for a miracle of different sorts. Make a list of the all the things you want to have; to do; to sing/read, and all the ways you want to connect. Then, do them (alive or having had passed). Buy duplicates of everything. Let people help you. – Kristin

•Enjoy every minute you have with your little one. Even if they are gone you will never get this opportunity again. Hold them, cuddle them, kiss them, dress them how you feel like. Your little one is more than their diagnosis. – Brittany

•Hope is what gets me through this time. But I also have to be realistic. -Emily

•Some may think a miracle didn’t happen for my family, but it did. My son was and is the miracle. Because even in death his life continues to manifest such power and such hope. The lives he has touched, the impact he has left — it is all pretty miraculous to me. How one tiny little baby, who never took a breath, could reach the hearts of others and speak to them in a hundred different ways is nothing short of a miracle. Not exactly the miracle everyone had in mind. But I now know there are different kinds of miracles. Little ones that present themselves in unexpected ways. We just have to be able to see them through the disappointment of not getting the miracle we wanted more. I had to rid myself of the false idea that miracles only come in grand gestures of divine intervention. Because sometimes miracles dwell even where there are crushed hopes and dreams, and those are the ones that are so incredibly hard to see. - Jessi

•One of the "gifts" of receiving our diagnosis when we do is to be able to make memories with our child and to savor every moment. I know that looks so different for so many. For me it was cherishing her kicks, making her lots of hats and picking out special outfits and blankets. It was learning to be 100% present in the moment because I had no idea if we had a tomorrow. My diagnosis day is still the hardest and worst day of my life, I am still grateful for it because it gave me 5 1/2 months to cherish moments I might have looked over. – Kellie

•You are amazing for walking this path. Truly courageous. Cry when you need, and remember your baby is here with you now. It's not over yet. Focus on loving your baby with all your efforts. In the end, you'll know you did everything a mama can do. And I promise, saying hello will be the best day of your life. - RaeAnne

•In the midst of it, you can choose to find the minutes of beauty, while simultaneously cursing the injustice. – Sarah

•You are brave. You are doing a brave thing. When people tell you that, they mean it. It takes courage… and well, you have it. Give yourself the most grace, and extend it to everyone around you. They won’t understand unless they’ve been here. It’s good that they don’t know. Just smile and nod and then do whatever feels right for you, moment by moment. – Megan

We want you to feel loved and supported. We want you to vent to us, to share your joy with us, to laugh and cry and smile and frown with us because we will do it with you too.

Perhaps you are feeling overwhelmed mostly at this moment. Here is a link to many wonderful resources for you- just the tip of the iceberg. If there is something specific you are looking for and can’t find it, we will be happy to help.

Welcome, Mama. We are the mothers who have gone before you and will go after you. May you feel the warmth of our arms wrapped around you. You are not alone.

We are so sorry that you’re here… but we will love, honor, and remember your precious child with you.

Please join us in the private group for mothers who continue pregnancy after a fatal diagnosis. We are here for you <3