I have attended the births of families whose babies had a fatal diagnosis and have sat with them in the NICU throughout days or weeks as they prayed and hoped their baby would beat the odds. It’s such a difficult time for a family and I am honored to be a part of that experience. I am seeing a trend though, that is haunting me. I don’t know what started this such as pastoral training which says this is a good way to help a family cope or not but some pastors are saying very damaging things. Recently, I sat with a family as they prepared to say goodbye to their baby.

This family BLED hope that their baby would survive. Hope so strong, the room felt sacred. The room felt as if God himself was in the room, providing the comfort this family needed. If you were in that NICU room, you, yourself, would have been filled with the hope that emanated from this family.

“Prove the doctors wrong,” they said. “Our baby will survive this.” These are such common statements and thoughts among NICU families. We need hope, without it, it’s very hard to go on.  Despite nearly all odds being against survival, this family had complete hope. I was moved beyond words. I felt it within my blood. This baby WOULD survive.

I sat with this family as they held their baby for the first time. As the bereavement doula, we began to talk about options; about the “what if the baby doesn’t survive.” “Slow,” I said. “There is no rush to decide right now but it may feel rushed if/when baby passes.” The thought of the baby passing was overwhelming to them. I could understand. We as parents, are not designed to bury our children, especially our children that have seemed to have just started life. If those options are discussed, families may feel it lead to that outcome. But that is not the case, sometimes baby’s die.

Elizabeth PetrucelliTo accept does not mean to lose hope. To accept does not mean giving up. To accept does not mean we are no longer trying.

As this family wavered in and out of acceptance a pastor entered the room with a message. The message was similar to others I have heard this past year. The pastor interrupted my time with this family. Looking back, I should have finished and asked the pastor to wait. I should not have relinquished my seat for this pastor. The energy this pastor brought into the room disrupted mine so much so, that I felt the need to retreat. Was the devil pushing out God?

As I departed, the pastor was sure to state that they were there for only positive talk. There was no need to talk about if the baby passed because the baby wasn’t going to pass.  The pastor was so sure the baby wouldn’t die with these words “I am a messenger from God. And God has told me your baby will not die. I am here to tell you this.”

Was this false hope? Was the pastor disguised as a messenger from God but was really a messenger from the devil? I had hope this pastor was really a messenger from God to bring relief to the family that their baby would survive. I didn’t want to think anything different because now, there was even more on the line. If this pastor was wrong, I couldn’t imagine the extra pain this family would endure.

I waited outside the room when another message was relayed to me about what this pastor said. “God is not an indian-giver [sic]. He did not give this baby to you only to take the baby away.”

I nearly fainted after hearing these words. Where was this pastor coming from? Does the pastor not know the Bible? “For we are all God’s children” (Galatians 3:26). A friend of mine who lost her son to terminal brain cancer gave me very comforting words following my own loss of Ruby. “Our children are not really ours. They are on loan from God. We may have them a short time or a long time, but ultimately, they return to their Father.”

We do not understand our earthly life. We are not meant to. Our eternal life is what we are to look forward to, but how can we look forward to that when we have to experience such immense suffering? Won’t God spare us this suffering? Some are spared but not all. No one knows why. Why would this baby be created and born only to be taken from the loving arms of mother and father?

It’s a mystery.

Their baby did pass. They accepted their baby’s diagnosis and removed their child from life support as so many other families do. I had been with this family for days and I felt as if this pastor did them such a disservice. This family had faith but to hear it from someone considered to be an authority, was devastating after their baby passed.

Through my work with this family following the burial of their baby, they were so angry with God and the pastor. They felt completely betrayed having heard from a “messenger from God.” Why would a pastor introduce themselves as a “messenger of God” here to tell them that their baby will live without a shadow of a doubt? I keep hearing these kinds of statements. I just don’t understand and neither do the families that are heartbroken.

Have you heard similar statements during your journey? How did they make you feel?