Author, Blogger, Educator


The Price of False Hope: You won’t believe what the pastor said!

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?

Life or death in the NICU…Whose choice is it?

This is going to be a very controversial post. I won’t divulge too much information about where I heard this but this has been on my mind for a few weeks. While having a conversation with NICU personnel (not at my hospital), the discussion came up about how some parents prolong their sick child’s life. Okay, now before you read on, if you are sensitive or in a place where you can’t read about loss, PLEASE STOP HERE!

I was appalled by some of these nurses’ statements. “Why don’t the parents just listen to us and let their child go?” “Why must they hold on to hope by prolonging death?” “Why should we try to keep a baby alive when we know they will suffer with horrible defects/problems/be in a wheelchair, etc?” “What gives them the right to tell us that we need to keep trying to save their child…we know what’s best!”

There were other statements too but I nearly vomited and almost left the room. First…IT’S NOT YOUR CHOICE! Second…FIND A NEW JOB!

I was horrified when they kept going on and on about the quality of life for the child and the fact that if they were in a wheelchair that it was somehow a horrible life. I was like “Who are you to judge? Who are you to make these decisions? And how do you know the child will be wheelchair-bound of suffer from some other issue?”  It was sickening to hear them all complain about saving a baby under 24 weeks because of “how bad off the child will be.”

So I proposed to the group, “What is wrong with having a child in a wheelchair?” One responded, “It’s about quality of life and a parent shouldn’t be able to choose that.” It took everything in me to stay in the room. It also took everything in me from not jumping across the table to strangle this person.

So basically…a parent can’t make this decision for their child and a parent has no right to allow their child to live if they might suffer from a defect/issue or be wheelchair-bound. OMG! If it isn’t up to the parents, it certainly isn’t up to you…NURSE!

They kept referring to micro-preemies and how horrible their lives are. I discussed that a 21 weeker was saved and lives a normal life and was shunned. “NO WAY! I don’t believe that!” “A 21 week fetus can’t survive outside the womb.”

I told them it was on the internet. Just google it and you will find the story. The mom lied about her gestational age in order for the doctors to save the baby. (Something we should NEVER have to do. If a baby is born and trying to breathe, we should make some life saving attempts).

Here are a few stories:

Frieda Mangold – 21 weeks 5 days

Amillia Sonia Taylor – 21 weeks 6 days

And here is an update on Amillia for those who are wondering if she had developmental problems.

And here is the story of Jonathan Whitehill who was born at 25 weeks but was only 10.9oz’s. I am sure one of these nurses would have deemed him to be a child that would be severely impaired or in a wheelchair. Unless they consider glasses a disability, they are surely wrong.

Even more disturbing…we abort babies this gestational age! What is wrong with society?

No. I am not naïve…I know and realize that some babies this small do not survive and if they do, MAY have developmental problems but my point is this…who are you to take that miracle away? Who are you to make the decision on if the baby lives or dies?

I feel so sick to think that nurses and doctors don’t put their all into some of these babies. We are all human, I get that, but what if? The BABY should make that decision. If the baby is trying to breathe, we must try to save the baby. If the baby gives up, then we need to work with families through their loss but ultimately, PARENTS make the decision for their child. For them, making the life and death decision is devastating!

Some parents need time to say goodbye and that might mean prolonging death by keeping a baby on life support but honestly, is it really that easy to just “pull the plug” and move on? It’s not. It’s not as simple as saying or hearing, “Your child isn’t going to survive, we need to remove life support.”

I still can’t believe I heard these statements from NICU nurses who may have been responsible for caring for my baby and my sister-in-law’s babies. I really wanted to tell them to find another job because they were no longer needed. BUT, and this is a big but, I knew they had experience and probably DID serve other preemies well. But still, I can’t get over their non-chalant, “we should be able to make the decision, mantra.”

For those of you still reading, what are YOUR thoughts?

– Breaking the silence of First Trimester Miscarriage

Did you find this post beneficial? Click the links below to share it on Facebook! Or buy my book by clicking here! Don’t forget to subscribe to my blog by entering your email in the box to the right.

Subscribe to this blog!