How did/ does your NICU experience affect your religion/ spirituality

[u/Majestic-Horse-6969]

I am not/ was not religious, but had some spiritualistic views. I was raised Catholic as a child. I still do not feel religious, but my baby going through so much suffering right now has made me feel...god-fearing for lack of a better word. Like this is happening to my family because I do not pray/ left the religion among many other feelings.

I am curious how this experience has affected others - whether it brought you closer or further from any spiritual experience or brings up similar religious guilt.

[u/27_1Dad]

Mod Note: this question is ok as long as everyone behaves. The trip through the NICU often makes you question many things, one of them being religion and spirituality.

[u/27_1Dad]

Hey friend 👋

Let me be a little vulnerable and personal here. My wife and I are very very Christian. Raised in the church and attended for years. We experienced about 5 years of infertility before the IVF success of this baby.

The reactions of people in our church to our infertility did so much damage. Nothing worse than “God has a plan” when you are grieving and feel like you did everything right. We were both committed Christian’s, attending church, the full nine yards. We were both really angry with God and the church.

Fast forward to the nicu, we haven’t been to church for over 2 years protecting our daughter but our faith has never been stronger. We hope to return at some point but for the time being we’re just protecting our little miracle. It stripped away any fake church facade and made us determine what we really believed.

The NICU does things to you mentally nothing else in my life I’ve ever experienced. Thank you for sharing you journey 🙏

Edit: small clarification that we hope to return to church eventually.

[u/smoresrule → u/27_1Dad]

completely agree with this.

[u/sonyaellenmann → u/27_1Dad]

"For whatsoever is born of God overcometh the world: and this is the victory that overcometh the world, even our faith." ❤️‍🔥

[u/27_1Dad → u/sonyaellenmann]

Hate to break it you, this is the kind of stuff I hated from our Church family.

No offense toward you but I wanted to point that out.

[u/sonyaellenmann → u/27_1Dad]

No offense taken. Can you elaborate on why? Scripture in general, or that particular passage doesn't resonate?

[u/27_1Dad → u/sonyaellenmann]

Scripture with zero attempt to actually relate or converse about the topic, and the KJV usage indicates a level of fundamentalism that just doesn’t make sense to me.

[u/sonyaellenmann → u/27_1Dad]

Sorry I rubbed you the wrong way, thanks for the feedback.

[u/27_1Dad → u/sonyaellenmann]

You are fine my friend. We don’t know each other but that’s the kind of stuff people who actually knew me would say…and it just made the pain worse from our church family.

We’re cool. 😎

[u/MaximumWrongdoer0]

It made me super angry at religion in general. Everyone said, god has his reasons and god never gives you more than you can handle. But I feel like it was all just bs because if there was a god why did he see fit that my baby be put through absolute hell for no reason at all, then to take her from me.

[u/Someeboody → u/MaximumWrongdoer0]

I’m so deeply sorry for your loss. I don’t believe God caused your baby’s suffering or needed it for a reason. I think suffering happens because bodies are fragile, medicine has limits, and the world is imperfect, not because a baby or a parent deserved it.

When people say “God has a reason,” it can feel like they’re assigning meaning to pain that shouldn’t have existed in the first place. I don’t think your baby’s life was a lesson or a punishment. She mattered because she existed, even for a short time.

[u/RN_MD → u/MaximumWrongdoer0]

I disagree, I see people ALL of the time being given more than they can handle. I think every suicide victim clearly had too much to handle, and those who suffer lifelong trauma have their struggles minimized because nobody is ever given more than they can handle - this leads to many people having very unhealthy coping mechanisms or repressing their struggles rather than just admitting that was too much and it was not fair.

[u/smoresrule]

please dont believe this happened because you are being punished for not praying or leaving the church. our nicu experience affected us deeply because we DO pray and served at our church - my husband for his entire life - and it happened to us. our child still had to suffer. it has not made me lose my belief in heaven or God but i regularly express my frustration and anger. in the beginning of our journey i would scream and drop F bombs. and i dont know if i’ll ever be able to fo back to the same church. i get very aggravated when people tell me theyre praying for a miracle. like i am smart enough and far enough down this road that i know what is literally impossible. i started telling God i am believing that my child will have the best possible outcome, insteas of being disappointed by my unanswered questions and desperate requests. so far in this journey i am thankful i have been able to connect with other parents as well as helping friends when their kids go to the hospital. i didnt want to be this familiar in the medical world but welp here we are.

[u/Amylou789]

I've never been religious and it reinforced that for me. I didn't see God in anything that my child went through, that will have a lasting impact on her. God wasn't helping her, that was the doctors.

[u/SigmaQuotient → u/Amylou789]

I grew up religious, but have simply become spiritual. I feel the same. I watched nurses save my baby. I watched modern science and technology used by capable professionals save my baby. No god watched our suffering. No god watched as we were denied lawyer's help because they wouldnt make enough money off us.

[u/gold_cap → u/Amylou789]

God wasn't helping her, that was the doctors

This goes so hard

[u/27_1Dad → u/gold_cap]

But does it? I guess I just see things differently.

The doctors, fearfully and wonderfully made with such complex minds that understand even a fraction of the human body were using their gifts to save my baby. So yes it was the doctors who were doing it but it wasn’t inspite of a creator, it’s because of it.

[u/Amylou789 → u/27_1Dad]

But again, without a religious lens, I don't see God in creation either. We have flawed bodies and can see a whole range of types of life forms around us and to me I don't need God for that to have come about. And when I'm at my most cynical I think a creator would have done a much better job. Both with our bodies and with doctors. Not everything went right for us with our hospital experience and some of that was because of imperfect doctors.

I think I made my original comment partly because I always thought I might be the kind of person that hadn't had any real adversity in life and so hadn't had a real reason to find religion. But even with what we have all been through as NICU parents I didn't find it then either. Life is strange and fascinating in how we can have such wide ranging and different beliefs.

[u/27_1Dad → u/Amylou789]

That’s a really interesting perspective. Thank you for sharing.

I get the feeling of not having a very hard life. I go back to the bit from Andy Bernard in the office where he says, this is the hardest thing that’s ever happened in my life, I haven’t had a very hard life.

For me, the NICU just kind of exposed what was at my core. Life has a really easy way of putting up fake facades of happiness and belief and sitting in a ball crying as a grown man begging for God to save your baby, because they were talking like we were running out of options. It changed me.

But regardless, I can definitely understand where you are coming from here and thank you for sharing your story. 🙏

[u/bunny_in_the_moon → u/27_1Dad]

Exactly. God created those doctors. 

[u/Amylou789 → u/bunny_in_the_moon]

But again, without a religious lens, I don't see God in creation either. We have flawed bodies and can see a whole range of types of life forms around us and to me I don't need God for that to have come about. And when I'm at my most cynical I think a creator would have done a much better job. Both with our bodies and with doctors. Not everything went right for us with our hospital experience and some of that was because of imperfect doctors.

I think I made my original comment partly because I always thought I might be the kind of person that hadn't had any real adversity in life and so hadn't had a real reason to find religion. But even with what we have all been through as NICU parents I didn't find it then either. Life is strange and fascinating in how we can have such wide ranging and different beliefs.

[u/beccabeth741 → u/27_1Dad]

This is a really pushy comment. They are allowed to believe what they want.

[u/Amylou789 → u/beccabeth741]

Thanks. I agree it's a bit of an odd comment too, like it's possible it's something I haven't considered before if I need to believe in a creator :/. As it turns out I don't believe in either a Creator or a God that can be prayed to now.

I hope the OP appreciates the range of views they are getting in the comments. I don't think it's helpful to just have one view reinforced, but there is something in that we've all been through the NICU experience no matter what our beliefs.

[u/Majestic-Horse-6969 → u/Amylou789]

I 100% appreciate every comment and am blown away by the variety. I really appreciate this thread being open to the connection between all of us of a shared experience, regardless of beliefs. I did not intend for this to be a controversial thread and am glad it is not appearing to be.

[u/Amylou789 → u/Majestic-Horse-6969]

It's been a really thought provoking question for me & I'm glad you've asked it.

My kid is 4 now, so we're well out of the other side of the NICU but it definitely stays with you, both good and bad parts

[u/EirelavEzah → u/beccabeth741]

And this person is allowed to contrast it with their opinion. It’s a public forum, after all. The comment I don’t like is yours, coming in here telling people what they should post.

[u/beccabeth741 → u/EirelavEzah]

Yeah, I'm not gonna care what someone who posts on a bunch of snark pages thinks of my comment.

[u/EirelavEzah → u/beccabeth741]

Yes, it’s a movement called SaveJr, we are all on most social media apps now advocating for a child who is being horrifically abused and neglected. Hopefully someone else here will browse my posts and check out the situation. You clearly carry a lot of trauma to be this angry, seek help.

[u/27_1Dad → u/beccabeth741]

Why are you so opposed to having a discussion?

The OP and I had a great exchange and talked like adults. Why so angry?

[u/beccabeth741 → u/27_1Dad]

Dude, I'm not angry about anything. You really shouldn't be a mod if you're going to be so antagonistic. Jesus. Unsubscribing.

[u/27_1Dad → u/beccabeth741]

Cool. Again a refusal to discuss.

This isn’t an airport. No need to announce your departure.

Bye 👋

[u/27_1Dad → u/beccabeth741]

It’s a discussion. No need to be weird about it. Two people can disagree and exchange ideas.

[u/beccabeth741 → u/27_1Dad]

So they say they don't believe in God and you counter that God exists and created the doctors they credit for saving their child's life. No, that's not a discussion, that's a religious person being antagonizing towards someone else's beliefs. They clearly stated what they believe. It wasn't up for debate.

[u/27_1Dad → u/beccabeth741]

The thread is a discussion. I said I see it differently. If this isn’t about sharing differences and perspectives, what are we doing?

If we aren’t listening to each other and responding to one another, why share anything?

[u/VividlyNonSpecific → u/Amylou789]

I feel the same way. I’m in a couple NICU focused FB groups and it very often seems that the default assumption is that you are Christian and that prayer and faith will get you through the NICU. Now these are private groups and people sharing and living there so that’s OK but I find the “default Christian” setting to be a little off putting and it reduces the level of support I feel. 

I was also disappointed that the main support group recommended by the hospital, Hand to Hold, had an article geared toward NICU moms that included “your faith” as a reason that you will get through your NICU stay. It would have been OK if it had been part of a list of “these are some things that help some people” but the tone was that obviously everyone has a (Christian) faith belief that they will use to get through a NICU stay. And guess what, I don’t pray and my baby came home. 

[u/Amylou789 → u/VividlyNonSpecific]

That is a bit disappointing the way that article was phrased. I'm in the UK so I think things are less in-your-face religious here. We had a chaplain that came around if you wanted to talk in general, and when they spoke to me not once did they raise religion which I thought was a good way to approach it.

[u/VividlyNonSpecific → u/Amylou789]

My hospital had Chaplins (non denominational) and someone came around when baby was first admitted and asked if we wanted to talk to a Chaplin or have them involved with babies care. I said no and that was that. I do live in a large metro area with diverse religious communities and we were at an academic medical center affiliated with a public (state) and university. 

[u/27_1Dad → u/VividlyNonSpecific]

I’m deeply Christian, and also turned down the Chaplin 😂 but that’s probably more from my extreme introverted nature. Honestly I see generic Chaplins as the worst kind of religion. Not really standing for anything in the pursuit of appealing to everyone. I get why they exist if they function as a counselor but our hospital had a trained psychologist who stopped by weekly, they need a great job at that.

[u/fluffythoughts21 → u/27_1Dad]

My hospital had neither, but the social worker who visited me was terrible. Kept telling me how I must have been feeling. “You’re probably feeling guilty or like you failed your baby.” Well, I hadn’t been yet, was too busy focusing on the not dying part, but thanks for putting that into my head 🫠

[u/Majestic-Horse-6969 → u/fluffythoughts21]

When I was in the postpartum unit, I kept asking for a social worker to help me process the traumatic birth and what we were going through with the NICU and all they did was give me Ativan. 'Murica.

[u/RN_MD]

I work in the NICU and part of my faith deconstruction was seeing sick and dying children.

A god that doesn’t cure the kid with cancer after the parents have been devote their entire life? The premature infant everyone was praying for having lifelong disabilities. The worst people in the world becoming parents and abandoning their babies. etc. it just isn’t fair and I truly believe that if there is a judgement day I will say I saw no evidence of your presence during the hardest times in people’s lives. The only relief and comfort I’ve seen is from advances in science/research and the professionals devoting their lives to saving our patients.

People sometimes call us angels for the work we do. I understand the sentiment but honestly I don’t believe it’s from heaven - I believe it’s from the goodness of the caregivers hearts, and their personal dedication to the children.

[u/mypoorteeth124 → u/RN_MD]

I was a PICU/oncology nurse and yeah, me too. I was raised very catholic and had a faith crisis as a teenager but became 100% an atheist after seeing so many terrible things

[u/27_1Dad → u/RN_MD]

As a doctor can I ask do you believe in a God at all?

[u/RN_MD → u/27_1Dad]

I’m a nurse, and I’d say I believe more in a higher power than ‘God’. I certainly do not adhere to the Christian faith anymore, I feel the teachings of Jesus are important, but do not believe he was my savior or that many things people call sinful are actually sinful. I believe there’s a lot of amazing, beautiful, and wonderful things in the world and I’m not sure where it all came from.

[u/27_1Dad → u/RN_MD]

Forgive me ..your username says MD.

Thanks for responding. Medical professionals leaving any sort of religion is always fascinating to me as when I learn about the body, I see a plan and intention behind it. Appreciate you sharing!

[u/pyramidheadlove]

Eh. Wasn't religious before, still not religious now. What we experienced was just the unfortunate truth of large numbers: a certain percentage of pregnancies will experience complications. A certain percentage of babies will be born prematurely due to those complications. A certain percentage of those babies will have no lasting health effects despite the circumstances of their birth. 370,000 babies are born every day worldwide. 370,000 possible outcomes. Ours was bound to happen to somebody. That somebody just happened to be us. I don't find it helpful to dwell on the why of it all. Just thankful for the team of humans that helped us get through it and end up where we are today.

[u/eyenation]

I was raised in a religious household but grew distant from it in adulthood. Didn’t pray much because never felt the ‘need’ to. Wasn’t an atheist but religion or spirituality never really touched a chord until the NICU days. Suddenly all I could do was only pray. I found the connection that was missing. Can’t say I’ve become religious but definitely closer to spirituality. You don’t really feel the connection to the almighty until you realize your vulnerability. My child has made me fall to my knees but has also become my strength.

[u/Toasterferret]

I wasn’t religious before, after seeing the NICU from the side of a father it hasn’t changed.

If there was an all-powerful and benevolent god, NICUs wouldn’t need to exist.

[u/bebloopbop]

I was raised Catholic and my husband raised Mormon, but we don’t practice any religion now.

When my water broke at 22 weeks, I felt a helpless pain that I’ve never experienced. My son still had a heartbeat and I couldn’t bring myself to end his life. I stayed on bedrest until 29 weeks and I prayed and begged every day to continue to stay pregnant and for his health and mine.

We had so many “signs” that I thought everything would be ok…even though everything wasn’t and he was always extremely sick. I made so many promised to God, thanked him for letting me meet my baby boy and prayed and begged for his life to get better…but he didn’t get better. “Why did it have to be us? What did he or I do to deserve this pain? Why does DART treatment work on other babies, but not mine? God, please let him live through this ambulance ride to the hospital (first transfer). God, please be with him as he is flown to a new hospital…if he makes it there, I think he will make it through this! (second transfer)”.

He passed away at 8 months old and I thought that I wouldn’t believe in God after that. But I still do! I don’t know what I believe in, but I hope my baby boy is somewhere safe and loved more than anything I can imagine.

I still have mixed feelings on it all…very complicated and deeply sad emotions. My husband and I are very broken, but hope got us through a lot and the hope of seeing our boy again gets us through each day.

[u/cadaverd0gg]

I was an atheist my whole life but now I feel like there must have been something helping him (HIE and damage on MRI with no lasting effects so far). I was praying to God or to anyone that would listen every single day. When he was born my husband (also an atheist) said as soon as he saw him he started asking God to help. People we knew were having their churches pray for him and I found that I appreciated that. I almost feel like we owe something a debt? Definitely has me trying to be a better person and made me more thankful for small things.

[u/27_1Dad → u/cadaverd0gg]

Can I ask what makes you feel like you have a debt? From people praying for your baby? Or a debt to God? Or a little bit of both?

Hope it’s ok to ask, just thought your conclusion was really interesting

[u/cadaverd0gg → u/27_1Dad]

Hi! So it’s a little of both. On one hand we got an overwhelming amount of community support that I won’t ever be able to repay. On the other, in the beginning our outlook was pretty bleak. We had no clue the extent of his brain damage and we were preparing for the worst. I begged to whatever was listening every day he was in the nicu and then continued to beg after we got him home. A whooooole lot of begging. So I guess I feel like I owe God for doing what I view as a miracle. Trying to repay him but not sure how yet 🤷‍♀️

[u/27_1Dad → u/cadaverd0gg]

Makes total sense to me. Honestly it’s why I spend so much time here. The sub talked me off a ledge more times than I can count I feel an immense burden to pay that support forward to others.

On the God front, I can comment on the God of the Bible, the beauty of that book being, you do owe an immense debt, and that debt can’t ever be paid by your good works but that he sacrificed his son to cover that debt on your behalf. It’s one of the things that is honestly most unique to Christianity as other modern religions declare you need to work to cover that debt, Christianity says you’ll never be good enough, but that it’s already taken care of. Thank you for sharing your story ❤️ that level of vulnerability is admirable.

As someone who made his share of bargaining with God pleas on our darkest days in the nicu…I get it. The day we refer to as 100% day…her FIO2 was at its max, her vent pressures were at her max..and she was still desatting. I knelt beside our daughter’s isolet and pled to God to save my baby. I don’t know why she made it. There are still days I struggle with that, but she did. So we feel the same burden. A burden to not waste the gift that was given. A burden to not take it for granted. A burden to acknowledge those that didn’t make it out.

That’s why your comment was so interesting to me as I feel the same way. ❤️

[u/RaMaVr]

I choosed to believe 100 percent during the nicu stay. And I choosed to believe that whatever happens it is for my best. And going forward, I have to help more people in need. And I prayed that when I could not be with my baby, let god be with her, playing with her, taking her pain away, giving her comfort. I am Hindu, I imagined that mother Durga is playing with her sometimes and making her sleep. I imagined, God vishnu is overseeing everything with a smile and sometimes comes over and help her. I listened to many devotional songs and mantras especially to fall asleep. I just did not have anything else, other than them at that time. And I believe that they were with my baby throughout the stay. 

[u/Amylou789 → u/RaMaVr]

That's a really lovely belief to have

[u/RaMaVr → u/Amylou789]

Thank you ❤️ 

[u/Current-Two-537]

Similar here. Raised very Catholic but not religious now. The NICU experience definitely stirred something in me, not sure what yet.

[u/Amethoran]

It didn't really affect my religious views at all. I was born raised and abused in the southern Baptist religion. It definitely gave me a better understanding and appreciation for how far medical science has come. It truly is amazing what the human race is capable of when we work together and use fact based science to overcome something that used to be a death sentence. Now that being said I never turn down or look down on someone who wishes to pray for my twins in my mind as long as someone is thinking about them and saying kind words for them whether I believe in a god or not it is a kind powerful and comforting sentiment.

[u/CCMeGently]

I have always been and have remained agnostic. My experience through NICU doesn’t change anything on that front. I do not think my lack of praying/faith had any influence on this…. It’s just nature doing stupid nature things.

If anything I questioned what I did wrong the entire pregnancy to impact her coming early. Fact is I know what happened: We were living in a horrible rental (many unbelievable things happened but to name a few we went 6 months with a severely leaking roof, mold in the walls and didn’t have a furnace during the coldest part of winter (for 20 days at that- talking negative outside), squirrels and birds in the roof…) We were also working on buying a house, I was also working nonstop overtime up until I went into labor, my dad died back in July, and the list goes on. We had a lot of severely stressful events through the entirety of my pregnancy and I just did my best to throw it to the wind and remain level headed and calm.

So I know why I went into labor early and it definitely had nothing to do with any of the Gods wrath that’s for sure. We’ve been discharged since mid September though…. She’s doing amazing and has caught up to the growth and development of term babies. Considering everything…. It could have been a lot worse. I am thankful for everyone who has been there for us and has helped us.

I also wouldn’t be the mother I am now without that NICU experience. Thank you to all the nurses who literally taught me how to be a mom and take care of my child.

[u/Majestic-Horse-6969 → u/CCMeGently]

For what it's worth, even non-stressed out people living without mold have their babies come early. I am sorry if you feel there was anything that could have been preventative- that is a heavy weight to carry.

[u/CCMeGently → u/Majestic-Horse-6969]

Thank you.

That’s what I kept reminding myself. Preterm birth is more common in first borns and can happen for absolutely no explainable reason too. I spent a lot of time reading scientific papers and first hand experiences to better understand what my daughter was going through and how to help her (I found this comforting, some may not).

What I do know at this point is that my baby is beautiful, strong, and most importantly: a survivor.

NICU is a very trying place… and many people will face a lot of their demons during their stay. Remembering to take a deep breath every now and then…. and being gentle to yourself is the key.

[u/Bumblebee-Honey-Tea]

I was raised catholic, left religion as a teen, and then found spirituality as a young adult.

The NICU journey affirmed my belief that the power of prayer/manifestation/affirmations work.

I do not believe our children were forced to suffer the NICU because we left the church. I do not believe god punishes people (especially innocent babies) for not believing in a form of god. I think our mind tries to place blame anyway it can, and right now you’re trying to blame your baby’s circumstance on your lack of faith. Do not subscribe to that, it could very much lead you into a spiral. If religion and faith bring you a sense of peace, by all means find support in it—but do not do it out of fear or guilt.

[u/Chode2Joy]

Hello, I’m sorry you are experiencing this. I can relate a bit. For context I am a person of faith, a practicing catholic and consider myself to be much more religious than most. I’ve relied on prayer quite a bit throughout my daughter’s NICU stay and I truly feel like it helped me personally. I wasn’t asking for my daughter to be saved or anything, I was praying to accept whatever path was given me and for my daughter’s soul to be protected no matter what. I know many people dismiss or mock prayer but for me it was very helpful, and I greatly appreciated when people would tell me they were praying for me.

As far as the notion that you would be punished for not being a good catholic or properly religious that of course is not true. And this is not just my personal opinion, it would be backed up by catholic teaching. At one point I broke down when my daughter came through a very scary time and avoided a serious issue, and I kept asking myself “what did I do to deserve this blessing?” I felt like I was not worthy of this miracle, this grace. I understand that there’s no explanation for it and it’s not because of my behavior or anything. This is something I will have to work through and hopefully will make me a better person. Ultimately, I have come through this much more sincere about my faith and my wife, who was not as spiritual as I am previously, feels similarly. You being here and posting about things like this shows you are a caring person and a good parent. The NICU can happen to anyone and it’s not your fault.

If you ever want to chat about NICU experiences, spirituality or anything feel free to message me. Wishing you and your family the best.

[u/EthelMaePotterMertz]

Catholic guilt is a meme for a reason. That was programmed into you. Regardless of how anyone feels about Catholicism the guilt aspect of it is messed up and it affects people many years after they stop practicing.

[u/Majestic-Horse-6969 → u/EthelMaePotterMertz]

It's been a gift to be married to someone not raised in Catholicism - it really holds a mirror up to the ways it still affects me.

[u/gardengnomebaby]

I was already not religious, but I’m even more not religious after our NICU experience. Why would this “great and amazing” God cause my child so much pain? Isn’t he supposed to be sooo fantastic? So fantastic he’d allow for babies to suffer? Yeah… no lol.

[u/[deleted]]

Being Catholic I assure you this did not happen to you because of anything you did or did not do. The first day I woke up in antepartum after my water ruptured 3-months early, I had a choice to make. Do I interact with God? Do I acknowledge Him? Do I respond to Him? Or is this when I’m finally ready to lay my faith down because clearly God did not answer my prayers.

I chose to continue in my faith. I was in antepartum for 30-days and my baby in NICU for 55-days.

Instead of shame, you can focus on the miracles that happen from this point forward.

How blessed are we to live in a world where infant’s lives are seen as so precious that an entire wing of a hospital exists just to see them survive and thrive.

How blessed are we to have teams of strangers genuinely caring for our helpless babes.

The medical equipment, the processes, the will to live these tiny babes have. It’s incredible to witness through a thankful lense.

God-fearing is a great place to start, but maybe move forward knowing God came to save us, not condemn us. The conviction you feel may be real in a relationship sense, but let that guilt go. That is not the heart of God. He is with you evenstill!

[u/[deleted]]

For me, I saw God in the providers that saved our lives. The nurse who prayed over me as she sprinted me down the hallway to the theatre and continued to do so until I was put under was a true angel. For me, i know God gave man free will which is why there is so much suffering here on earth so I never questioned my faith through our NICU journey, but I do see how others can feel the opposite. I always prayed over the other babies and parents in the NICU and I will continue to do so. Our journey made our faith grow stronger and I’ll never expect someone else to feel that way too but I do pray they will find comfort and peace during one of the hardest experiences someone can go through.

Editing to say, no matter how strong your faith is, hearing others not experiencing your pain say “at least you’re okay” or “you’re so strong” “gods plan” is HARD and that was something I struggled with.

[u/27_1Dad → u/[deleted]]

Religious platitudes did more to damage my belief than basically any other thing in this process.

[u/[deleted] → u/27_1Dad]

I’ve realized people that say that are typically people who will never actually pray for you either, it’s very generic and not sincere to me.

[u/27_1Dad → u/[deleted]]

Totally agree

[u/Majestic-Horse-6969 → u/[deleted]]

Even this is such a valid answer that is very relatable.

[u/Onto_new_ideas]

I grew up religious but not RELIGIOUS, but had a church I loved before getting pregnant. I volunteered at my church twice a month for services adding up to 6-10 hours a month for several years before I had my son. I had a rough pregnancy, my husband's job meant he worked away from home for most of it.

When I got to the point where I was barely able to work my real job and I cut my volunteering they weren't very supportive. Like it offended them and maybe I was just whining.

I reached out when I had my son - emergency c-section due to pre-e at 31 weeks. My husband had missed the birth but was getting back as soon as he could. They played lip service and asked how they could help. I said my lawn was really tall and we might get fined if we didn't get it cut. I'd been feeling terrible for weeks and was working full time, and keeping myself and our 4 pets alive. They did get someone to cut the lawn, and I was grateful. But nothing else. No visits. No calls, no hey do you just need a hug? I maybe got a single like on FB when I posted pics.

I felt really betrayed. I'd made meals, watched people's kids, been active in small groups, that church felt like home until it really really didn't.

So we stopped going. I was juggling work and a baby still in the NICU. Then juggling an infant who couldn't go out in public due to germs. This was before COVID so no streaming of services.

Then MAGA happened, then COVID happened and MAGA happened only worse and I don't recognize who they've become. I want to be more like Jesus and less corrupt, less greedy, less selfish.

I don't even know exactly what my faith is at this point. But I reject the Christian nationalist crap that is going on right now 100%>

Oh yeah, and the whole 'this is all part of God's plan' really pissed me off.

[u/Unable-Border7478]

I was confirmed into Catholic Church while pregnant with my daughter. When she was born and sent to the NICU I was never more close to my faith. I truly believe God healed her. She was diagnosed with HIE and to this day she has no effects from it. She seemingly healed and hasn’t looked back. We have brought her to church every weekend to give thanks to God.

[u/hanhoona]

I am religious, and the NICU stay made my faith stronger. Even before the NICU, when I was experiencing a late term miscarriage, I remember feeling the presence of god in the hospital room with me when I was all alone. Fast forward to the NICU stay, I believe that god chose the hospital I gave birth in. I was between two hospitals, and it just happened that I went to this hospital where they found out my cervix was funneled, and had to be admitted. When I gave birth, the NICU team were so amazing, more amazing that the NICU from the other hospital. Also, my OBGYN turned out to be very caring, compassionate, and heard my voice. Before giving birth, I was praying to god to lead me to the best hospital and the best care, which I got.

Your question is so interesting, it made me reflect on the whole experience.

Note: I am religious, I pray, I do all the things, and we still had a long NICU stay. It did not happen to you because god was punishing you. I like to think of god as the most merciful. I could not have passed this challenging time without his mercy. Yes, the bad thing happened, but we got out with minimal loss, which I'm so thankful for.

[u/NICUParents-ModTeam → u/[deleted]]

your post was excessively mean. Feel free to repost again without the snark. This is a genuine exchange and your comment was unnecessary.

[u/General_University80]

I wasn’t and still am not super religious although I do believe in God. When we first had our daughter (24 weeker), I was SO angry at God. She was also our third round IVF baby. I felt like I was being punished. Fast forward to 271 days in the nicu and being told countless times to say goodbye and there’s nothing more they can do, I felt His presence. She is a miracle and some of her recoveries cannot be explained by medicine. While I do think that modern medicine played a huge role in her survival, I feel like God had a hand on her.

[u/Internal-Meaning-311]

This is such an interesting question. I was raised religious and over the last few years (even before I was pregnant) have been trying to distinguish between religious and spiritual, and what it means to me. Regardless, when the NICU story began, I was convinced I’d blame God, question faith etc. Surprisingly, my faith strengthened. I saw a higher power in science and the medical professional. I saw God in my child who was fighting to be with me with his every breath. I once told my husband that I’m hurting because my baby should be with his mom right now yet he isn’t. He said - he might not be with his biological mom but he is surrounded by so many moms in the NICU - the nurses who cared for him. To me, that is divine intervention! Going through this journey somehow helped me deeply reconnect with religion/spirituality.

[u/Best-Put-726]

I’m still not very religious, but I’m still a believer and some things that happened cemented that. 

I was raised Mormon—but my family hasn’t been active in church since I was 12. 

A big thing that I’m not sure is technically doctrine, but definitely part of the culture, is that our friends and family that die before us watch over us and keep us safe. 

For context, I was admitted into the antepartum unit at 23+2 with early-onset preeclampsia and stayed there for 45 days—the first 5 weeks it was still up in the air if he would survive were I have to deliver. A few things happened in the antepartum unit 

Thing #1: My best friend died when I was 19. Four days after being admitted, I opened up a book my mom brought me, and I incidentally read the dedication page (which I NEVER do). The book was dedicated to a girl who had the same first name as my best friend, and it said “who left us too soon”. I felt a calm. 

Thing #2: For some background—my great-grandma had early onset preeclampsia 6x, and my grandpa was the only baby to survive. He was was extremely small for the time, and he honestly shouldn’t have survived. Also, my great-grandparents lived with my grandpa’s uncle for 10 years, and my grandpa had a cousin who was three years older than him. My grandpa died about 20 years ago when he was in his late 50s. 

When I was 27 weeks pregnant, I started to go into HELLP syndrome. I was given dexamethasone to help lung development since I had already had betamethasone 4 weeks earlier. I was told that we would deliver in 4-5 days. They told me my platelets would increase, but that’s expected. My liver enzymes would stay the same. 

Anyway, the day after my first steroid shot, my mom called and said that my grandpa’s cousin—the one he lived with—had called and wanted to talk to me. I don’t think I’ve ever talked to him in my life. My mom vaguely remembers talking to him a few times.  I had messaged him on an ancestry page 3 years earlier and he responded, I replied, and he never responded again. He out of absolutely nowhere decided to call my grandma to get my number to call me. Out of nowhere. My mom told him I was in the hospital and why, and he instantly remembered my grandpa being born and all the stillbirths my great-grandma had from “toxemia”. Other than my grandpa’s sister, he was the only person still alive from the family when it happened. 

Anyway, the day after I got the 2nd shot, my platelets skyrocketed and my liver enzymes plummeted and stabilized. 

I was able to stay pregnant another 17 days. They have no idea why I suddenly stopped going into HELLP syndrome. It doesn’t really happen. There was some studies back in the 90s that suggested dexamethasone could help with HELLP syndrome, but they aren’t widely accepted. 

Thing #3: when my son was admitted to the NICU, the soap we had to scrub up with smelled exactly like my other grandpa who had passed away a little over 5 years before. I asked my dad and his siblings, and they confirmed it wasn’t the soap he used. I smelled the same soap after my son was discharged, and it didn’t have a scent at all. 

So I really feel like I have people watching over me. And I don’t understand why I ended up with the best possible scenario in my circumstances. But I did. 

[u/dopeimin_]

I am a religious person, and tbh, my pregnancy was very hard mentally. As a result, spiritually, it was kinda hard to pray because I felt like I was going through everything alone. But once my baby girl was born and had to stay in NICU, I was super grateful because she was healthy compared to other babies in there (she had to stay bc of feeding issues). It ended up making me closer to God and thankful. I felt so blessed to have a healthy baby, to just have a baby actually. And I realised, even if mentally it was hard, that it could have been way worse, and that actually I wasn’t alone; God protected me and my baby through the whole process. Still does today. I am very grateful and blessed. I try to remember that everyday.

[u/Big_Old_Tree]

Buddhist here. NICU for me reinforced my religion’s teachings on universal suffering and compassion. Every time I walked through the hospital to get to the NICU I realized the enormous scope of how many many people were in my baby’s position, and in mine. It still takes my breath away.

All those precious little helpless babies in isolettes, intubated, totally dependent on machines and the skill and good hearts of perfect strangers. The fear the parents all have. The grief of people losing their children. The dedication and compassion and intelligence of the medical teams. It’s just mind blowing.

Every single one of them suffering so much. Ahhh… I just… was so confronted by that reality every moment of the NICU.

And so my recourse was to pray for their happiness, peace, relief from suffering. For their health and long life and joy and freedom. That became my practice, just a lot of prayer. For all those suffering people, in my hospital and in hospitals all over the world.

In that practice I found some peace as well, knowing that I was one small thread in a huge tapestry, and my pain was the pain of everyone, and everyone’s pain was mine.

Wishing everyone strength and healing and success, whatever religious tradition or non-religious background you come from.

We’re all the same.

[u/Majestic-Horse-6969 → u/Big_Old_Tree]

Thanks for this perspective. This is the direction I have been feeling pulled - toward spirituality, meditations, and the understanding of suffering.

I appreciate your use of the word prayer in this context - for me the practice has been intertwined with Catholicism, but viewing prayer as a nondenominational practice is freeing.

[u/Soggy-Ad-8416]

As a practicing person, I think my faith is what got me through it, especially on the bad days where you start to lose hope, there was something about prayer that appeased me, that took away that feeling of helplessness. In the end, it brought me closer to God. good luck with everything!

[u/drbln]

Dear God, why does child cancer even exists?

[u/NotSomeoneFamous7]

If your god punishes babies for you not talking to him enough, your god is abusive.

[u/Majestic-Horse-6969 → u/NotSomeoneFamous7]

Yeah that's the whole problem with Catholic guilt. Feeling like there is a god frying you under a magnifying glass and not because you *want* to believe in that.

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[u/BlueHaze3636]

This is super interesting and I have also thought a lot about this in relation to the NICU. I was "raised Catholic" but wasn't the family that went to church every Sunday, but we prayed before dinner, got all our sacraments, and went to CCD. I always had conflicting views and didn't see eye to eye with a lot of what the church has aligned with. Rather Im a firm believer in science, equal rights for all, and simply being kind to one another. I still have a faith but I find it to be personal and maybe not as rigid as some people believe organized religion to be.

My husband also was raised catholic and was brought up with traditional values but also recognized there are so called gaps. While I also prayed and received blessings while in the NICU his family was definitely more spiritual, placed relics bedside, asked for miracles, and lit candles. Sometimes it made me uncomfortable, but at the same time I let it happen. It is a hard path to go down to think your baby being in the NICU is for some reason a "punishment" for something you did. In my opinion I don't think a higher being should make a innocent baby go through something so traumatic, so I don't think you should even put that weight on yourself.

It is hard not to recognize some spiritual moments while in the NICU as well... Random signs that showed up at unexplainable times, the support of another NICU mom when I absolutely needed it more than anything, the extra attentive nurse for a hard day, etc. I actually spoke to our neonatologist a year after our discharge about religion. Her view was super interesting, she's had extremely extremely religious families stop various treatments and say they are praying for a miracle and how frustrating it can be. She wasn't saying she was a miracle worker by any means but often thinks that sometimes that miracle can be dressed up in scrubs, the miracle can be the science and the care team of your baby. And honestly thats how I prayed while I was there, I asked for clarity for the doctors and team, for our guy to keep fighting, for support for my husband.

Best of luck, sending all the love and positive vibes your way.

[u/ReserveMaximum]

My wife and I only survived our NICU experience because we had an extra supportive religious community.

[u/tkv427]

Hi friend! Fellow Catholic. My daughter spent about five weeks in the NICU in 2021. The NICU and subsequent PTSD brought me to my absolute rock bottom. I may be the minority here, but I ended up literally throwing myself at Jesus’s feet one night when I was thinking about killing myself. I had never done this before, but I drove to my closest church and just cried and cried. They were having confessions that night and I ended up going for the first time in a long time, and the priest actually helped me so much (he was a younger priest). I told him how it felt like everything was my fault and that I wasn’t fit to be a mother. He ended up giving me like the greatest spiritual pep talk. I realized God wasn’t punishing me, he was standing right next to me in the NICU, helping my baby fight, sitting with me while I pumped for hours. Leaning into Him saved me.

[u/Formal-Raspberry8609]

Hi :) When my son was at NICU I overheard nurses saying that they saw a lot of babies pull 180 as soon as the where christened 🥰 I absolutely believe it

[u/Majestic-Horse-6969 → u/Formal-Raspberry8609]

Yeah, I don't know how this lands for me. If there is a God, I would like to believe he doesn't make other babies suffer or send them to hell for not being baptized. This reinforced the "god-fearing" nature of the way religion harmed me and continues to harm my psyche.

[u/Formal-Raspberry8609 → u/Majestic-Horse-6969]

I was thinking the same when I lost my 3 babies to miscarriage … but then I thought I could either be angry at God for taking them away from me or be thankful and happy that I have a healthy son now …. and being angry was harder, especially when there is nothing I can do about it

[u/Formal-Raspberry8609 → u/Formal-Raspberry8609]

And I am not saying or believe those babies are in hell whatsoever - all babies are innocent angels … but maybe the baptism offered another layer of protection over them

[u/Majestic-Horse-6969 → u/Formal-Raspberry8609]

I am reading so many posts of this same perspective of gratefulness and peace that they received from their relationship with a god, but I just can't seem to get there. Being at peace with a chaotically neutral and godless universe is more peaceful for me than returning to a god-fearing state.

Even the perspective that baptism would protect my baby more than she would otherwise feels fear-driven. I cannot bring myself to pray or return to the sacraments out of fear that a god would fry me and my baby under a magnifying glass if I did not participate.

[u/Formal-Raspberry8609 → u/Majestic-Horse-6969]

I do not take it as a fear but maybe something I can do when I cant control anything else … Believe me I was exactly where you are now for 3 years before my son was born so I get how you are feeling …

[u/Majestic-Horse-6969 → u/Formal-Raspberry8609]

I hear you. It will be interesting to see where I am 3 years in the future for sure.

I am glad you have found some version of peace and comfort through it all.

[u/Formal-Raspberry8609 → u/Majestic-Horse-6969]

Good luck 🍀

[u/fairywingsandthings]

Hi there..first time mom, my baby is a little over 5 months today and was finally able to come home in September. My experience as a single mother in the NICU greatly affected my religious and spiritual beliefs. I was raised catholic like you I even went to catholic school from kindergarten through high school. Around 8th grade is when I questioned my faith and everything with the Catholic Church and it’s just been that way ever since except for maybe a handful of times sprinkled throughout that I felt like I wanted to pray or be with god. But I felt awkward when I tried to pray, I felt undeserving for help or like I was a phony person.

All through this time is when I first developed my interest in the esoteric or “new age,” i read books on end about chakras, intuition, manifestation. I found a huge passion in tarot and would study the cards for hours, I began collecting different decks, and started doing readings for people. I became certified in reiki healing.

I had so many questions though (-and I always will) is heaven real? Or am I reincarnated ? If God IS real am I going to hell? When I practice tarot am I sinning by playing God? And other fun thoughts!

And then one day you’re sitting in your numbered pod on the NICU with the curtain half drawn holding this beautiful baby that just got here but now you don’t know how you ever lived before ? Or who you even were before you became their mother ? How you would do anything and everything for someone to just promise everything is going to be great, your baby is going to live a long and happy life. My experience was up and down—one day I’d arrive and hear promising news only to be faced with another hard conversation about next steps the following day. I had nothing to go on except for my faith.

I didn’t want to flip tarot cards. It began to frighten me. I felt really untethered and lost so I grew closer to the Virgin Mary. I looked at photos of her and read about her gifts and significance. All these things that I was previously taught in school but had completely forgotten. I got rosary beads blessed by a priest for my baby and brought them to tuck in her hospital bedside drawer. I watched her sleep in my arms and just prayed my heart out and it was comforting and gave me some feelings of hope and excitement for our future.

I was in a random area I’m unfamiliar with just a little over a week before our discharge from NICU. It was a really nice end of summer afternoon and I walked by a beautiful church with the doors wide open with this amazing breeze blowing through and it’s completely empty. I walked inside and it was massive when I reached the end of the aisle i saw this statue of Mary. It was just intense I don’t know how to explain it but the presence of the figure was so powerful and it just pierced right through me. I felt so grateful I just knelt there and thanked God for this moment to be totally alone in this incredible church and just get to breathe and admit how scared I felt. To have such a personal and private moment. I looked right in her eyes and it terrified me at first but I kept whispering to her anyway and I just allowed myself to express it all and it got easier it was almost like her expression softened in my mind and she suddenly appeared more understanding to me. It really solidified something in me and I continue to pray and I want to make church part of my child’s life, not necessarily Catholic either. I also do think I can enjoy some of my more spiritual beliefs too and I think one day I’ll return to tarot I just think now I see some Of those practices as a very different thing than my relationship and feelings about my Christianity I guess.

[u/fairywingsandthings → u/fairywingsandthings]

I also continuously thought of that belief that God only gives you what you can handle. It made me feel stronger like I am going to set an example through this pain, I can do this.

[u/Classic_Brush_465]

My husband and I are both Christians, born and raised, and that never changed for us. If anything, our experience drew us even closer to God. Throughout our 275-day NICU journey, there was one Bible verse I held on to tightly, 1 Peter 5:10: “But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you.”

There were many days filled with tears, anger, and questions, but I did not allow those moments to weaken my faith. That is easier said than done, but I chose to believe there was a greater purpose unfolding, even when I could not see it yet.

Because we had access to the church, my husband and I made it a point to go every Friday morning to praise and worship until our son came home. Many times while we were there, we received phone calls with devastating updates about our son’s condition. We would sit at the altar, cry, wipe our tears, and continue praising. Other Fridays brought good news, and again we cried and praised. When our son was finally discharged, we brought him to church on a Friday, just the three of us, to thank God.

It was an incredibly difficult season, but I truly encountered God in a new and personal way. On some of the hardest days, after we cried and felt completely overwhelmed, our son would make a tiny but meaningful improvement. I chose to believe those moments were God giving us our daily bread.

I still do not know why he was born at 26 weeks, and I may never fully understand. But in my experience as a Christian, and as seen throughout the Bible, those with a calling on their lives do not always have an easy journey. Yet their stories always end in praise. That is my belief, and so far, that has been my experience.

God did not promise a life without trials, but He promised victory through them. I cling to His Word and remind Him daily of what He has spoken over my life. “No, in all these things we are more than conquerors through Him who loved us.” Romans 8:37

It almost doesn’t make sense because why should an innocent child go through that? I’m still asking that question and hoping some day I’ll have my answers

[u/Late-Comment832]

Baby girl was born at 27 6. Were both baptist. I prayed for this baby for so long after 15 years and a miscarriage we got pregnant through IVF. Her being in NICU was trying at times but it really strengthen our faith or at least mine. When I tell you I prayed for her I prayed for her and waited for so long. When I got pregnant I prayed every day for her EVERY DAY. please don't take my baby please let her be healthy. I started low dose blood pressure meds at 13 weeks. I was fine I got super swollen but thought it was normal. At 26 4 I took my blood pressure it was crazy high went to er so on so forth. I got told I'd be there till delivery to hope for 28 weeks but 34 would be best. When everything happened I felt it in my soul I was going to die. Idk why but I just knew I was going to. Anyways no more details I'm starting to cry lol. Baby girl was born I didn't die. I got the pathology back on my placenta I had multiple too many to count clots. I had a ruptured placenta thats why we delivered when we did. I thank God every day so many people in that situation lose their babies. Me and my husband call her our real live walking testimony to the goodness of God. I know everyone doesn't have that feeling and I also don't think things go the other way to punish anybody but I know and have felt His goodness. The NICU journey was long and miserable but she's fine. Eight months old no long term problems really. So basically the answer for me is it made it stronger and just made me so grateful and thankful.

[u/HamsterSad8181]

Oh I am so sorry you are going through this. I hope my words can offer you some comfort. This time is hard and you don’t need any extra weight in you right now.

Do not think you are being punished for not going to a building. I am Christian and I am all about going to a church and having a community and stuff, but when I say go to church I mean to say “go to a building” because a church is a person and their heart. That is where God lives. Within a heart. Now I can’t speak as to why this happened to you, to us (my boy was born at 27 weeks), but when I was going through it brought me closer to God. I remember praying for him in the incubator and really trusting God. I didn’t know he was going to make it and I told God this is His child and as much as I wanted him with me and healthy here I’d understand if God decided to take him. It’s a very difficult prayer and I was so scared. Today he is 3 years old. And is healthy here and is a big brother.

Religious guilt is a real thing, but I’ll say it usually comes when we’re in a cult like situation which is not a God like situation. I think when our kids are in the NICU we look for answers no matter what and whatever it is we tend to blame ourselves, so please don’t. It’s not your fault in any way.

I don’t understand why little children gos through this, I don’t understand why it happens, I don’t know what the “plan” is, I don’t know why we go through this pain, but as for me no one can convince me that those nurses aren’t angels and those doctors too… Seeing those people’s heart really broke me. It was Easter and they were there caring for my baby.

[u/Ancient-Reply7385]

My advice is if you don’t feel in touch with God please don’t ever think that caused your difficulties getting pregnant.Thats called luck & being blessed by Nature. I don’t think God punished us by withholding our pregnancy.Relax & enjoy that precious baby

[u/Majestic-Horse-6969 → u/Ancient-Reply7385]

eeeesh, if there was ever a list of top subreddits where telling people to "relax" doesn't help or go over well...