Preparing for a baby you may not bring home

When my husband and I became pregnant with our first child, I counted down the days to our anatomy scan. I couldn’t wait to get a closer look at our little one and finally learn whether we would be bringing home a baby boy or a baby girl. Our celebration quickly turned to worry when the doctors told us that our sweet baby might not survive long after delivery. I can clearly remember the moment we were first told that our little boy would likely fight for his life. I remember staring intently at the geneticist, trying to soak in every word as tears poured down my face. I remember feeling deafened by the questions that swirled through my mind.  

Hydrocephalus. Missing cerebellar vermis. Heart defect. Possible chromosomal abnormality. Developmental delays. Potentially fatal. The room spun and I desperately tried to grasp at words I knew as I was bombarded with terminology that I did not understand.

We never considered that we might not be bringing home a baby at all.

We were left to consider a heartbreaking question. How do we prepare for a baby we may not bring home? How do we embrace life, when death may be eminent?

I wish there were a manual for this sort of thing. I wish there were a formula to outline the proper way to face such a heavy dilemma. There was nothing that could have prepared us for the road ahead. Yet in the same vein, I want to share a few of the steps we took that helped us immensely and a few we didn’t that I wish we had.

Choose a Name
Naming Ethan played a powerful role in preparing for our son’s arrival. Even through we cherished him from the beginning, choosing a name helped us strengthen the bond with our son. To us, he was our Ethan—our little boy. Choosing a name also made it easier for us to own our family’s story, share with others, and ask for prayer and support—We had a son named Ethan who we dearly loved, anomalies and all.

Educate Others
Talking about Ethan’s condition was difficult, but it helped our friends and family know how they could support us and it helped us feel more supported.

Determine how much or how little you want to prepare physically and don’t let anyone make you feel guilty for it
The question of whether to prepare a nursery and whether to have a baby shower are the two questions that I receive the most from other mamas who have been assigned the treasured task of carrying a baby who may not come home with them. This is not a clear-cut decision and there is no easy answer. My advice has simply been to not allow guilt or shame to influence their decision. 

Some people may say that it is foolish to purchase items for a baby who may not have much time on this earth; others may argue that showering your baby with gifts is an outward sign of love—perhaps even an act of faith. People you love will have every opinion in the book and I encourage all parents in this difficult position to remember that their child is not focused on the “stuff” that you can give them. Stuff is not a sign of love. They will feel the love you have for them whether you decorate the nursery or not. They will feel the love you have for them whether you have a celebratory shower or not.  

If you want to decorate a nursery and have a shower, go for it! Savor each moment and make memories in the process. Personally, we decorated Ethan’s nursery. Although it was painful to come home to the nursery I had always dreamed about without him, it has turned into a calming retreat on those especially difficult days. Over time that room has transformed from a place that caused me pain, to a place that only holds happy memories—memories of my husband making me laugh as he assembled the crib and dreaming together as we folded tiny outfits. 

Preparing for Delivery
Don’t be afraid to ask questions and to find a medical team that is supportive and sensitive to your needs. While many of our doctors suggested termination, my primary perinatologist was highly supportive of our decision to carry our son to term and treated us like any other family. That made all the difference to us.

Create a birth plan—and, though I hope and pray you don’t have to use it, a death plan. I am so thankful that we took our time saying our goodbyes to Ethan’s body after he passed from our arms into the arms of Jesus. However, the fog of grief (and post-childbirth hormones) I wish I had thought to ask to bathe and dress him—it never even crossed my mind that we were allowed to do that until it was too late. Although painful, it may be helpful to consider these things ahead of time.

My biggest and perhaps only regret was not arranging to have professional photography done at the hospital. There are several nonprofit organizations, such as Now I Lay Me Down to Sleep, who offer free professional photography to parents who are giving birth to a baby with a potentially fatal diagnosis. Part of me felt guilty looking into this ahead of time, since we did not know whether Ethan would live or die. In hindsight, I wish we had more photos. Don’t feel guilty connecting with a photographer, even if you are not 100% sure of the outcome—none of us ever are.

Savoring Each Moment
One of the scariest, yet rewarding, decisions we made was to do our best to fully embrace each moment that we had with our son. We were told that Ethan could die before birth, die during the delivery, live for a short time, or go on to life a long life. We had no idea how much time we would have with Ethan and we considered each day to be a gift. We went on walks. We ate delicious food. We went camping. We talked to Ethan all day. We introduced him to all our favorite music. We read to Ethan each night. Yes, it was terrifying in moments to open our hearts up so wide knowing that they could be shattered in the end, but it was worth every moment of diving headfirst into celebrating each and every day we were given. We have realized that none of us are promised tomorrow and are thankful for a little boy who showed us that each day is a gift.

To the mama walking this difficult road:

Sweet Friend,

I’m so very sorry that you’ve found yourself here. I know this is not what you ever envisioned for your sweet baby and I know you’d give anything to trade places with them.

I know that you feel as if your innocence and happiness was stripped away from you with that crushing diagnosis. I know that you feel as if some people want you to simply move on and "just try again", while others won't even acknowledge that your child is in danger. I know that people often say insensitive things to try to console you—they really do care, even though it may be hard to see. 

I know you are scared. I know this hurts in ways that words can’t explain. I know it all feels so horribly unfair. 

I know you may feel guilt and shame--I know that you didn't do anything to make this happen. I know you'd do anything to change it. 

I know that this is sensitive territory and I want to assure you that there is grace upon grace to be given, despite the decisions you have made or are considering making. I know that we are all trying to do what we think is best for our babies.  I know that this is all terribly confusing.

I know that this is the hardest trial I have ever walking through. I know, without any doubts or hesitation, that every discouraging prognosis, every ultrasound, every appointment with a specialist, every sleepless night, every contraction, and every tear that I have cried since saying goodbye has been worth it—I know that the seven months I carried my son in my womb and the 93 minutes I had with my son in my arms were worth all of it. I know that I'd do it all again if given the chance. I know that there can be some joy in something so broken.

How I wish I could wrap you in a tight hug and cry with you. If you are in this place today, please know that you are not alone. I want you to email me. I want to know your baby's name. I want to know your due date. I want to pray for you as you walk this road. 

You are not alone in this. You and your baby are so loved. 

So much love,

Ethan’s Mom