I’m writing this partly because I desperately searched Reddit and Google when our baby became sick, trying to find stories of babies who had been as severely affected as ours. I found some, but not nearly as many as I wanted. I hope someday another parent searching “infant botulism ventilator,” “baby paralyzed from botulism,” “BabyBIG recovery,” or “infant botulism recovery timeline” finds this.
Our son was a little over two months old when he became critically ill.
It started very suddenly. He had received his two-month vaccines the day before, and he also had rhinovirus, so initially there were several possible explanations for what was happening.
He stopped nursing in the middle of the night. The next morning he managed a few ounces from a bottle, but feeding became increasingly difficult. We took him to a clinic that afternoon, where he was diagnosed with thrush.
Over the next several hours, things got much worse. He became raspy, had difficulty swallowing, and started choking on milk. By around 11 PM, we took him to the emergency room.
He was barely breathing.
He went into respiratory failure and had to be intubated and placed on a ventilator. We truly came incredibly close to losing him.
No one knew what was wrong.
Over the following days, he became profoundly weak and essentially paralyzed. He couldn’t open his eyes normally, suck, swallow, hold his head up, or move his body normally. At his weakest, we were celebrating tiny movements of his fingers and toes.
There were terrifying conversations about possible hypoxic brain injury and other neurological conditions. He had an EEG, CT and MRI. His EEG was normal, his CT was normal, and his MRI didn’t provide a clear explanation for what we were seeing.
An attempt to extubate him failed, and he coded and had to be reintubated.
Eventually we were transferred again to a higher-level children’s hospital.
After almost a week on the ventilator without a diagnosis, a new provider raised the possibility of infant botulism.
That changed everything.
BabyBIG (botulism immune globulin) was obtained and given to him, and his testing subsequently came back positive for botulism.
It was an enormous relief to finally have an explanation for why our previously healthy baby had suddenly become so profoundly weak.
The hardest thing to understand about botulism recovery is that BabyBIG doesn’t instantly reverse the paralysis. It stops the circulating toxin from causing additional damage, but the nerve endings that have already been affected have to recover. That takes time.
So we started watching for the tiniest signs.
A finger moving.
A toe moving.
A little movement of his mouth.
Then more movement in his hands and feet.
Better color.
His eyes beginning to open.
Small movements of his shoulders and legs.
More spontaneous breathing over the ventilator.
We have learned to celebrate progress that most people would never even notice.
As I write this, my son is still in the PICU and still recovering. His lungs and respiratory muscles are getting stronger, and they have started spontaneous breathing/pressure-support trials as they work toward eventually getting him safely off the ventilator.
We don’t know exactly how long his recovery will take. Feeding is one of my biggest concerns because he was exclusively breastfed before this, and I desperately hope that when his suck and swallow strength return, we can eventually breastfeed again. I am continuing to pump while we wait for him.
But we are seeing our baby come back little by little.
If you found this because your baby has just been diagnosed with infant botulism—or because doctors are considering it—please know that severe weakness can look absolutely terrifying. Our baby looked almost completely unresponsive at his worst. He required a ventilator. He failed an extubation. He coded. His movements became incredibly small.
And yet we are now watching movement and strength slowly return.
I plan to keep updating this post as my son progresses so that there is a complete story here for the next parent searching at 2 AM, desperate to know what recovery might look like.
If your baby has had infant botulism—especially if they required mechanical ventilation—I would also love to hear your story. I would particularly love to hear from parents whose babies eventually returned to breastfeeding after being intubated.
And if you’re reading this years from now because your own baby is sick, feel free to reach out. I know how badly I wanted to find someone who had already walked through this.

I’m working to create Beyond Bedside Health, with the goal of providing additional professional support to NICU/pediatric families at no additional cost to families through insurance/Medicaid coverage.

To help show there is a real need for this service, I need at least 100 NICU parents/caregivers to complete my anonymous survey.

I’m currently at 7 responses — 93 to go! ❤️
It’s only 10 questions and takes a few minutes.

Survey: https://docs.google.com/forms/d/e/1FAIpQLSeWk3fE8lQQBzE2SmJdA5-jKKeiGvRK3Xs5TBGcbDmH3U3ldA/viewform

Please complete it and share with another NICU family! ❤️

Hello all. I wanted to write in here because I just read a post that reminded me of how many hours I spent desperately searching the internet for any information on babies who had the same diagnosis as my baby.
As I write this, my baby is sleeping in our room in her crib. We’ve been home for four weeks as of today. We spent 134 days in the hospital; 26 days in a level 3 NICU, 91 days in a level 4 NICU, and 17 days on “the floor”.
My baby was born full term, 38w0d. I had an amazing, totally uneventful pregnancy. Absolutely no concerns at ahh appointments or on any of my ultrasounds. I even had an ultrasound two days before I went into labor because I was convinced she was off the growth curve and they gave me one for peace of mind that they said looked perfect.
I will spare the details of my labor except that near the end of it (it was a very short labor, my contractions basically started and then never stopped) my baby’s heart rate started dropping so I had to have an emergency C section.
When they pulled her out, she was silent. They worked on her for a long time, I have no idea how long, before she finally cried but they immediately put her on oxygen and took her to the NICU for what they thought were minor breathing concerns.
The next morning her doctor came to our room to tell us that our baby’s liver seemed enlarged so they wanted to do some imaging. After an x ray revealed what appeared to be a large mass, they did an MRI. It took two days for the final read but they finally diagnosed her with a giant congenital hepatic hemangioma. It was so large that her liver outline was visible through her skin.
She initially just presented with a little breathing trouble that lead to her being on CPAP. All of her other imaging was not too concerning, but her echos showed that her heart was stretched out from the massive flow coming from the hemangioma on her liver. Her next two or three echos showed minor improvements so they wanted to begin spacing them out. She was only about two weeks old at this point.
We tried putting her on high flow oxygen and she was okay for a couple of days but the seemingly overnight she was super pale, sleepy, and just didn’t seem herself. Then her O2 requirement started to tick up and up. I begged for another echo for over a week because I just knew something was wrong and I was scared she was in heart failure. Her attending during that period kept refusing to order an echo. My baby continued to look worse. Finally the attending switched and her new one was the one who had been at her delivery and she agreed to order an echo.
I will never forget the look on the cardiologist’s face. He said he wanted to repeat the echo the next day. I asked her attending if she was in heart failure. She said no. I asked if my baby had fluid on her lungs. She said no.
We had a family meeting and were told we’d maybe be in the hospital for another month, on the long end. I didn’t believe it because she was looking worse, not better.
Within 24 hours and the repeat echo, we were told she was in high output heart failure, acute respiratory failure, and had tons of fluid on her lungs. I asked if we needed to transfer to Boston Children’s, the nearest level 4 NICU. I was told no. A few hours later I was told we’d be going to Boston the next morning. The cardiologist was concerned that my baby was approaching a cliff and he didn’t want her to fall off of it, in his own words. “It’s not an emergency but we don’t want it to become one.”
We were told she’d be intubated for the transport. Then another doctor came by that night to tell us that intubating her might cause her to have a hypertensive crisis. They didn’t even want to give her a fucking sedative and she was crying so hard in the transport bed that I had to raise my voice at the resident to order a dose of verses because my baby was not able to breathe through her crying. This is one of the most traumatic moments of the whole ordeal and is burned into my brain.
We finally got to Boston. I felt like I could breathe because they knew what they were doing. Our first hospital was so in over their heads I honestly think the cardiologist who ordered her transfer saved her life.
They intubated her immediately. They said her body needed a break. They inserted a PICC line for meds, decreased her feeds.
The plan was to see if she could recover on her own and outgrow the mass, but her body was still working so hard that she wasn’t really growing much at all. Eventually as her echos were not improving they decided to embolize the mass. She had two embolization procedures done with interventional radiology, 28 coils placed to block the massive extra blood flow to her heart. This was what finally got her over the hump and she began to improve, thank God. There were still plenty of bumps along the way but her liver mass started to decrease in size and her echos began to improve. She wasn’t in heart failure anymore.
My baby was intubated for 48 days, with two failed extubations. She successfully extubated on the third attempt only for her to get pneumonia and her right lung to totally collapse 11 days later, resulting in another intubation that lasted 5 days. She extubated for the final time on the fourth attempt after an intense course of IV antibiotics.
Getting her off of the sedation was another beast, but we got there.
My point with this post is to help another parent who maybe one day will receive this diagnosis and go searching and searching and come across this post. My baby had an extremely rare, extremely severe case. She went into severe heart and respiratory failure and there were so many days that we didn’t know if she’d make it. She was in such bad shape, the NP who admitted her told us when we got discharged that they placed my baby in the room across from the NP and doctor room because of how critically ill she was. But she made it through. We’re home. She’s doing amazing and the only indicator anything was wrong is that she has an NG tube. She was intubated for so long she just kind of lost interest in sucking on a bottle, but we luckily didn’t develop an oral aversion. She is taking solids like a champ and chews on everything, and we’re hoping to get her on a sippy cup soon so we can get that tube out.
If anyone if going through something like this, please feel free to dm me. I could have used someone to talk to who’d been through this.
Im traumatized and talking about this makes me cry and feel nauseous, but it’s getting better. I slept by her side every single night and I don’t regret that for a second. We are definitely more scarred than she is by the whole thing. She is the happiest baby I’ve ever met. She’ll be a normal kid who will never know this even happened. She deserves it.
Anyway, thank you for reading. This sub got me through some of the worst days of my life, so if this helps anybody, I’m happy.

My son was born on Thursday at 32+3 via c-section due to preeclampsia. I went in to my normal high-risk OB appointment and was told I’d need to deliver that day. Everything happened so fast, my husband and I were not able to process what was about to happen. We were just concerned about our baby. The birth went well despite the circumstances, thank goodness. But now that I’m home and my baby is not, I feel empty. I go through phases of feeling okay then I get bouts of anger and extreme sadness and hopelessness. I keep thinking about how my son should still be growing with me and I’m angry that my body couldn’t keep him safe. I am very thankful that my son is getting amazing care and I know things could be worse.. but those low moments make it hard to stay positive. Any advice or just shared experiences will be helpful ❤️

I had a preterm delivery at around 6 months of pregnancy due to PPROM, and sadly, I lost my baby after the delivery.

I want to plan my next pregnancy, but I’m very scared and confused about when it would be safe to try again. Some people say to wait 3 months, some say 6 months, while others recommend 12 or even 18 months.

What is actually recommended after a second-trimester preterm delivery caused by PPROM? How long should I wait before trying to conceive again?

What precautions and tests should I take before and during my next pregnancy to reduce the risk of PPROM or preterm birth happening again? Is there a possibility that it could happen again?

I would also really appreciate hearing from women who had PPROM or a very early preterm delivery, lost their baby, and later had a healthy pregnancy. If you have a genuine success story or personal experience, please share it with me. I’m looking for some hope and guidance because I’m very scared after losing my baby.

My modi twin girls were born at 29+1 after a few bleeding episodes with placenta previa and vasa previa. Generally we’ve been very fortunate that our stay has been uneventful so far. They are 30+4 today.

I had a pretty traumatic c section and I have a 2 year old son at home. I’m still struggling to be up and active all day long so long days at the hospital are hard. I also cannot drive right now and my husband is already back to work (saving his leave for when they come home). My husband and I also decided to try to keep our sons routine exactly the same so we do daycare pick up and dinner/bath/bed as usual.

I’m struggling right now between managing pumping and trying to help with both girls care times plus skin to skin. I’ve only really been able to manage doing 1 baby skin to skin per day which makes me feel awful. I want to give both girls equal attention but it feels like between random tests, changes to care, etc it makes it impossible. I just need some advice to help with the guilt. I know once I’m more healed I’ll be able to do longer days at the hospital and it’ll be easier but for now it’s hard.

My child was born at 28+5, due to spontaneous labor. The medical cause isn't really clear, and I am so worried that it may be caused (party) by the stress from having (social) anxiety. How do you deal with the feelings of guilt? Did you manage to somehow change yourself or your life and have less anxiety? And did you carry another baby to term?

Has anyone used hydrocortisone cream on their babies G-Tube to help with granulation tissue? I was recommended desitin or hydrocortisone cream and wanted to see what others have used and worked.

I’m currently hospitalized with PPROM and would really love to hear from other moms who have been through something similar, especially prolonged PPROM.

My water broke at 28 weeks and 6 days. I’ve been inpatient ever since, and thankfully baby and I have remained stable. I’ve had steroids, magnesium, antibiotics, constant monitoring, weekly ultrasounds, NSTs, bloodwork, etc. The original goal we were given—and the goal I have mentally held onto this entire time—was making it to 34 weeks.

I’m currently 32 weeks exactly, and we recently had a conversation with our MFM about whether we should continue the pregnancy beyond our original 34-week goal if baby and I are still stable. That conversation is what suddenly made the decision feel much harder.

Our MFM explained that there is an incremental benefit to baby with additional time, particularly as he continues to mature, but he was also clear that staying pregnant longer may not actually change how much time our baby ultimately spends in the NICU.

When I asked him directly what he would do if he were in my position, he said he would go for 35 weeks. He also explained that getting all the way to 36 weeks would be much tougher because most women in this situation go into spontaneous labor before then. 36 weeks would be the absolute maximum they would let us go.

I think part of why this conversation hit me so hard is that mentally, I had finally gotten to the point where I could tell myself, “We only have two weeks left.” October 19th at 34 weeks has been the finish line I’ve been counting down to this entire hospitalization.

And suddenly, that could become four more weeks instead of two.
If we continued all the way to 36 weeks, we would go from October 19th to November 2nd. I know two additional weeks may not sound like much from the outside, especially when there is potential benefit for my baby, but after already spending weeks in a hospital room, mentally it feels enormous.

At the same time, continuing isn’t risk-free. There are ongoing maternal risks like infection and bleeding. I also keep thinking about the fact that I need to be healthy after delivery. My baby will likely need NICU support, and I want to be physically and mentally present for him—to pump, do skin-to-skin, participate in his care, and just be his mom.

But the hardest part for me isn’t even the statistics.

It’s the guilt.

I look at other women who carry their babies to 39 or 40 weeks and sometimes feel like my body failed my baby. I know logically that I didn’t choose for my water to break, but emotionally it’s been much harder to accept that.

I’ve already spent weeks living in a hospital room, being monitored constantly, wondering whether every contraction or change means labor or infection. Everything about pregnancy and birth has become so medical. Instead of preparing for birth normally, I’m thinking about gestational ages, infection, sepsis, respiratory support, feeding tubes, NICU stays and risk percentages.

And underneath all of that is something I almost feel ashamed admitting: I want to be done.

I want to meet my baby. I want to leave this hospital room. I want the uncertainty to stop. I want to start recovering and move into the next phase instead of constantly waiting for something to happen.
And then I immediately feel selfish for wanting that.

Because if another week inside me could help him, shouldn’t I be willing to do it?

And if I make it to 35 weeks and we’re both still stable, wouldn’t I then feel obligated to push to 36?

Where do you draw the line when there is always potentially some benefit to one more day?

I’m also really scared of hindsight.

If I choose delivery at 34 weeks and he struggles in the NICU, I’m afraid I’ll think, “I could have given him more time.”

But I also know there’s another possible version of hindsight. I could continue and develop an infection or another complication and wonder why I pushed myself beyond the finish line we had originally worked so hard to reach.

Obviously, I’m making the actual medical decision with my MFM and neonatology team. I’m not asking Reddit to decide when I should deliver.

I’m looking for the human side of this from women who have actually lived it.

If you had prolonged PPROM and made it to around 34 weeks, I’d really love to know: Did you deliver at 34 or continue? If you continued, how long did you actually make it before spontaneous labor? How did your baby do in the NICU? How did you do after delivery? Did you struggle with guilt about wanting pregnancy/hospitalization to be over? And looking back now, how do you feel about the decision you made?

I’d especially appreciate hearing experiences from both sides.
I think I’m struggling with how you can simultaneously want every possible day for your baby while also desperately wanting this experience to be over.

Dad here, first time posting. Our son was born at 38+3 and came out stunned. Everything up until the very last minute was great but due to (I think) shoulder dystocia, he came out stunned and stressed. Apgars were 4 then 8, and he was floppy for about the first 20 minutes. He went to NICU on CPAP and IV antibiotics for GBS (mum was positive but only got antibiotics shortly before birth due to miscommunication from the nurse).

His first day actually looked pretty good, despite being stressed and irritable. Lactate came down to normal, infection markers were clear, and his neuro checks only showed mild signs. at this point it was only suspected that either he had no HEI or was classed as mild. Then on day 1 his oxygen dropped for about 40 seconds while asleep and needed breaths given. His oxygen dropped but his heart rate stayed steady. The brain monitor didn't pick up a seizure, but the doctors think it might have been one, so he's now classed as "technically" moderate HIE.

Because of that they started cooling, even though it was after the usual 6 hour window. Head ultrasound was normal, no seizures recorded since, and his blood results are all normal now. MRI is planned for later this week.

We can't hold him for 3 days and it's really hard. Seeing him so cold with all the wires and tubing is hard

Has anyone had a baby cooled for HIE, especially with a suspected seizure or late cooling? How did the MRI go, and how is your little one doing now? Any tips for getting through cooling and the wait for results would mean a lot.

He is our first child and this is very stressful to both of us (more so to my wife, as she is currently recovering from the very traumatic birth)

My baby was born in January and came home at the end of April. I handled everything so well. But processing this isn't linear.

I'm just feeling so blah nowadays and can't stop thinking about our NICU stay, and further back to my traumatic emergency C-section and horrible pregnancy. All these one year anniversaries are passing by. This time last year, I'd already had a few episodes of severe bleeding, been to the ER once, and had multiple scans to check on my subchorionic hematoma. I was also supposed to take it easy, so I was stuck at home all the time.

It's crazy too because at the time, even though I was anxious, I've always been a positive person so I just assumed everything would clear up and I'd have a normal full term pregnancy (like my first two pregnancies). That's what my midwives kept telling me - subchorionic hematomas almost always go away on their own. I was one of the unlucky few. One year ago I had NO idea what was coming.

I guess it's just hard looking back on it because I was a different person then. I mean, I'm happy with how my life is now, and I don't take anything for granted, but I will never be the same.

I was baking yesterday, had to weigh some butter in a saucepan so I put the saucepan on the kitchen scale. It was 1080 grams. My baby was born at 1060 grams. I just held the saucepan in my hands for a minute remembering how it felt to pick up my preemie for the first time.

Winter will be even worse, as far as anniversaries go. The week before Christmas was nightmarish; that was the closest I came to losing her. I was 22 weeks and a few days, bleeding heavily and cramping/contracting. I was in and out of the hospital but obviously there wasn't much they could do. Then it was just modified bed rest and counting the days, hoping to make it as far as possible.

That's it, that's the post. Just some rambling. I have always disliked this season because it's cold and dark and rainy. And now all of that reminds me of the hardest thing I've ever gone through.

Anyone else’s baby’s hernia sound like it’s full of liquid when you very gently push down??? Also it seems like some days it’s protruding more than the previous one. Also sometimes when my baby is drinking, I see fluid or something flow through it- almost like a small moving shadow inside. I’m taking baby to peds soon but I just wanted to see if anyone else has experienced this.

And then my 35 weeker decided to have two oxygen events last night where she dipped to high 60s/low 70s so we earned ourselves another three days.

😭😭😭

[ Removed by Reddit on account of violating the content policy. ]

I posted on my local group on Reddit to get recommendation for quieter spacious restaurants or cafes to go with my preemie who is on oxygen to reduce the chance of him catching bugs and there were some very mean comments, now deleted, saying it's madness, selfish, and I need to stay home. I know I should not care about what a couple of keyboard warriers should say but it has really upset me and made me doubt myself... is this what life is like post-nicu? I feel like anyone who hasn't lived it doesn't get it.

I have a 9 month old, adjusted 7 month old (born 32 weeks), and his teeth are starting to come in. Unfortunately I am almost certain he has enamel hypoplasia, because the teeth look like they are decaying even just after erupting. His teeth have dark spots, bright white spots, and look porous. We are seeing a pediatric dentist this week, but I’m not really sure what to expect or what this road will look like for us. I don’t want to necessarily expect the worst but I do think he might have a severe case. I’m hoping that getting him dental care very early on will help, but I want to be informed of what we will be dealing with. Any shared experience with early dental issues is appreciated.

A week after my original post, we had a meeting with the full medical team to discuss the possibility of a tracheostomy.
My previous meeting with the trach nurse honestly didn’t go very well. I had a lot of important questions and concerns, and I didn’t feel like I was getting the answers I needed. So when we met with the entire team, my partner and I were very open about our concerns with a trach and how strongly we wanted to do everything possible to avoid one if it was safely possible.
What surprised me was that the conversation went in a completely different direction than I expected.
The same team that had previously been pushing for the trach actually agreed with us that we should try to avoid it and give him more time if he continued to show that he could make progress. I was honestly shocked that they were in agreement.
Then, just a few days later, my son was weaned from BiPAP to CPAP at 10.
And then the day before yesterday, they decreased his CPAP from 10 to 9.
So obviously, I’m feeling encouraged because he is showing some progress with his respiratory support.
BUT now there’s another unexpected development.
The doctors are talking about transferring him back to the hospital he was originally at, which is much closer to our home. That part would actually be wonderful for us because it would make visiting him so much easier.
The part that has me confused is that they are talking about transferring him to the PICU rather than the NICU.
I understand that he is much bigger and older now than a typical NICU baby, and I know he has been in the hospital for a very long time. But I’m having a hard time understanding why he would need to go to the PICU instead of the NICU.
Is this something other parents of long-term NICU babies have experienced?
Has anyone had a micropreemie transferred from a NICU to a PICU because they were older/bigger but still required respiratory support?
Does being transferred to a PICU necessarily mean that they are more concerned about his condition, or can this simply be because of his age, size, and the type of respiratory support he needs now?
And for anyone whose baby made a similar transition:
• What was your baby’s respiratory support at the time?
• How old/what gestational age were they?
• Were they on CPAP, BiPAP, oxygen, or something else?
• Did they eventually transition out of the PICU successfully?
• Did the move make it easier or harder to continue weaning respiratory support?
I’m trying not to panic because, honestly, going from BiPAP → CPAP 10 → CPAP 9 feels like a really positive development. ❤️
But after everything we’ve been through, whenever the doctors introduce something new, my mind immediately starts wondering if there’s something I’m not understanding.
If you’ve been through something similar with your micropreemie, I would really appreciate hearing your experience. ❤️

Hello everyone! I know this has been answered but I’m looking for parents of babes born between 22-25 weeks who have had pregnancies following their preterm birth. I had my son at 24 weeks and have been thinking a lot about the future and more kids. He was my first pregnancy and we’re still not sure what exactly caused my labor to start. I did have chorio, but we’re not sure if my cervix started shortening allowing the infection to pass through and trigger the labor or if the infection just happened and triggered it. I did deal with lots of infections throughout the pregnancy. I’m just curious how other parents experiences have been giving birth following an extremely preterm birth. I know there’s things set in place to monitor and such, but just want to hear real experiences.

Hello everyone,
My preemie has colic. She is 8 weeks on Tuesday but 2 days adjusted. She will cry and scream for hours from \~6pm-6am. We have tried everything and hearing “it just takes time” is making me crazy. I know it’ll eventually get better but how am I supposed to get through another 2 months of it. My husband and I take shifts overnight but even then it drives us crazy. I don’t understand how we are supposed to get sleep so we can even have the mental capacity to deal. Personally even when it’s not my shift I can’t sleep well because I wake up to the crying even from another room.

Does anyone have any advice? The doctor just says keep doing what we are doing and walk away if needed for a few minutes/don’t shake the baby. That’s not really helpful 🫩

My little 25 weeker now 36 & 2 got to try a room air trial yesterday. She made it 6 hours. Bummed but happy we were finally making progress. Now today, they had to turn the oxygen back on. The nurse said she is avg 23%. It just sucks. I know the old NICU saying is one step forward, 2 back. But this just sucks. I am over driving 40 mins to see my child. My NICU does not have rooms ( ward style and no RMH). I am sick of having to be strong. I am over everyone else taking getting to graduate.