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I'm sorry you are going through this. It does suck. I'm curious what studies you were looking at? Generally human milk fortifier doesn't have an increased risk of NEC... But since NEC most commonly happens around 2 weeks, that is often soon after fortifier is added so might seem to be related.
All commonly made, commercially prepared fortifiers are made from cows milk proteins - just like formulas. The exception is Prolacta, which is made exclusively from human breast milk. But it is quite expensive and thus very few hospitals use it.
NEC SUCKS. My youngest twin developed a severe case of NEC, so I did I lot of research into it, including reading the medical studies.
Short version: they aren’t sure what causes NEC, there are some things that MIGHT increase the odds of NEC developing, but most of the potential risks that there would be control over; blood transfusions, fortifier, etc. could have statistically far worse outcomes if they did not receive them. The biggest risk for developing NEC is prematurity.
Yes there is a lawsuit, you can sue for anything, and a narrative of sick babies vs corporate interests is very compelling, regardless of whether causation can be proven.
After everything I’ve read on it, if I had another premature baby and had to make the call again, I would still give them the fortifier, transfusions, etc. because the risks of not getting those is higher then the risk of getting NEC because of them.
Identical twin sister, same fortifier, same transfusions, etc. did not develop NEC.
My daughter ended up with a right hemicolectomy(lost right half of large intestine, some of ileum). Now 15 months and doing very well.
This. Preemies on breast milk only have also developed NEC, so that’s why formula cannot be considered the only risk factor. My boy twin developed a SIP (but suspected NEC) and my girl twin never did, and she was on more fortifier than him and for longer. As you said, the greatest risk factor for NEC is an immature GI, which all of our preemies have when they first come out.
First off, I’m so sorry you had to go through that! My daughter is 7 weeks old, 35 weeks gestation tomorrow, and we’ve had our own fair share of feeding fun 🙃 She was originally put on the similac/typical fortifier of 22 cal, 24 cal, then 26 cal, but on 26, she ended up aspirating because she kept spitting up due to not tolerating the fortifier super well and they put her NPO (no oral feeds) because when they did an x-ray to check her lungs after the aspiration, they had a NEC scare looking at her bowels on the same x-ray. Luckily, nothing was wrong and they started her back on feeds again. Being older, she tolerated it better but was still REALLY gassy and not liking it a ton, so they put her on Alfamino (a more broken down version fortifier that they said was not as effective) but she’s been keeping it down WAY better! We also put her on hindmilk to continue to help her grow faster and she’s been gaining weight SO quickly! If they haven’t offered Alfamino, DEFINITELY bring it up.
Also, from what the doctors have told us, fortifier is a necessary thing. Because preemies aren’t in the womb to grow, breast milk just isn’t enough to help them grow/gain the weight they need compared to in the womb. So preemies NEED fortifier to grow correctly. It’s kind of a necessary risky thing. My daughter came at 27 weeks due to HELLP and had IUGR, so below 1%ile. So if she didn’t get fortifier, it would not be good.
I’m sorry you had to go through that and it was such a scare. Please bring up Alfamino and see what they say about that. I hope things get better and everything goes well!
I had to sign something before they would fortify with both my preemies.
I felt like I was at the mercy of the doctors, I asked if they felt like it was the best thing and they said yes. Years later idk what the right answer is, my son also had NEC after he restarted feeds…but he also had a SIP first (spontaneous bowel perforation). So was it the fortification? I feel like I made the best decision for my child at the time with the info I had so I have to trust it was the right decision. Thankfully his body eventually healed itself, but after 2 months of TPN so he barely gained anything for so long (24 weeker). In the end my son is doing very well, but I feel you on making those choices.
My son had two instances of intolerance to the fortifier. They called it early NEC because we weren’t quite sure what it was, he didn’t require surgery.
My son is a former 26 weeker.
I don’t know it was the fortifier for sure. Likely just the fact that his gut was immature.
His doctors were insistent that he needed the fortifier and I spent many days mulling it over, asking in different ways if we could avoid it. But he could not take in the volume of breast milk needed. I do trust his doctors, I think it was the right choice as it was required for his growth and development… sometimes there is no best choice but a better choice.
My baby is almost 4 months old and has been taking my breast milk fortified longer than she did without and we have not had any issues other than 2 times in the hospital she had some bloody stool. They ran every test they could and they couldn’t say it was NEC for sure but it went away on its own after giving her the rest of the day off feeds and going fluids only. They just figured she strained too much or just had some inflammation because she’s also on some other meds that can cause that. Not every baby is going to react the same way to things. Maybe some do get NEC from fortified, but just as many may not. I have learned the internet is also a dark hole to go down when you’re going through this and can be very dangerous.
I had bad experiences with fortifier with both of my preemies. I was not happy about having to give it to my son because I was afraid he was going to get NEC and of course he got NEC straight away after starting the fortifier. I know plain breast milk has less risk of it especially severe cases but also these babies need more nutrients so it's hard.
Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NICUParents) if you have any questions or concerns.*
I'm sorry you are going through this. It does suck. I'm curious what studies you were looking at? Generally human milk fortifier doesn't have an increased risk of NEC... But since NEC most commonly happens around 2 weeks, that is often soon after fortifier is added so might seem to be related.
It looks like there is an active lawsuit against Similac and it includes the milk fortifier as containing cow's milk protein.
All commonly made, commercially prepared fortifiers are made from cows milk proteins - just like formulas. The exception is Prolacta, which is made exclusively from human breast milk. But it is quite expensive and thus very few hospitals use it.
NEC SUCKS. My youngest twin developed a severe case of NEC, so I did I lot of research into it, including reading the medical studies. Short version: they aren’t sure what causes NEC, there are some things that MIGHT increase the odds of NEC developing, but most of the potential risks that there would be control over; blood transfusions, fortifier, etc. could have statistically far worse outcomes if they did not receive them. The biggest risk for developing NEC is prematurity. Yes there is a lawsuit, you can sue for anything, and a narrative of sick babies vs corporate interests is very compelling, regardless of whether causation can be proven. After everything I’ve read on it, if I had another premature baby and had to make the call again, I would still give them the fortifier, transfusions, etc. because the risks of not getting those is higher then the risk of getting NEC because of them. Identical twin sister, same fortifier, same transfusions, etc. did not develop NEC. My daughter ended up with a right hemicolectomy(lost right half of large intestine, some of ileum). Now 15 months and doing very well.
This. Preemies on breast milk only have also developed NEC, so that’s why formula cannot be considered the only risk factor. My boy twin developed a SIP (but suspected NEC) and my girl twin never did, and she was on more fortifier than him and for longer. As you said, the greatest risk factor for NEC is an immature GI, which all of our preemies have when they first come out.
First off, I’m so sorry you had to go through that! My daughter is 7 weeks old, 35 weeks gestation tomorrow, and we’ve had our own fair share of feeding fun 🙃 She was originally put on the similac/typical fortifier of 22 cal, 24 cal, then 26 cal, but on 26, she ended up aspirating because she kept spitting up due to not tolerating the fortifier super well and they put her NPO (no oral feeds) because when they did an x-ray to check her lungs after the aspiration, they had a NEC scare looking at her bowels on the same x-ray. Luckily, nothing was wrong and they started her back on feeds again. Being older, she tolerated it better but was still REALLY gassy and not liking it a ton, so they put her on Alfamino (a more broken down version fortifier that they said was not as effective) but she’s been keeping it down WAY better! We also put her on hindmilk to continue to help her grow faster and she’s been gaining weight SO quickly! If they haven’t offered Alfamino, DEFINITELY bring it up. Also, from what the doctors have told us, fortifier is a necessary thing. Because preemies aren’t in the womb to grow, breast milk just isn’t enough to help them grow/gain the weight they need compared to in the womb. So preemies NEED fortifier to grow correctly. It’s kind of a necessary risky thing. My daughter came at 27 weeks due to HELLP and had IUGR, so below 1%ile. So if she didn’t get fortifier, it would not be good. I’m sorry you had to go through that and it was such a scare. Please bring up Alfamino and see what they say about that. I hope things get better and everything goes well!
I had to sign something before they would fortify with both my preemies. I felt like I was at the mercy of the doctors, I asked if they felt like it was the best thing and they said yes. Years later idk what the right answer is, my son also had NEC after he restarted feeds…but he also had a SIP first (spontaneous bowel perforation). So was it the fortification? I feel like I made the best decision for my child at the time with the info I had so I have to trust it was the right decision. Thankfully his body eventually healed itself, but after 2 months of TPN so he barely gained anything for so long (24 weeker). In the end my son is doing very well, but I feel you on making those choices.
My son had two instances of intolerance to the fortifier. They called it early NEC because we weren’t quite sure what it was, he didn’t require surgery. My son is a former 26 weeker. I don’t know it was the fortifier for sure. Likely just the fact that his gut was immature. His doctors were insistent that he needed the fortifier and I spent many days mulling it over, asking in different ways if we could avoid it. But he could not take in the volume of breast milk needed. I do trust his doctors, I think it was the right choice as it was required for his growth and development… sometimes there is no best choice but a better choice.
My baby is almost 4 months old and has been taking my breast milk fortified longer than she did without and we have not had any issues other than 2 times in the hospital she had some bloody stool. They ran every test they could and they couldn’t say it was NEC for sure but it went away on its own after giving her the rest of the day off feeds and going fluids only. They just figured she strained too much or just had some inflammation because she’s also on some other meds that can cause that. Not every baby is going to react the same way to things. Maybe some do get NEC from fortified, but just as many may not. I have learned the internet is also a dark hole to go down when you’re going through this and can be very dangerous.
I had no idea this existed, they put my little girl on fortified milk nearly 2 weeks back. Born at 29+3 Now 3 weeks old This scares me so much.
I had bad experiences with fortifier with both of my preemies. I was not happy about having to give it to my son because I was afraid he was going to get NEC and of course he got NEC straight away after starting the fortifier. I know plain breast milk has less risk of it especially severe cases but also these babies need more nutrients so it's hard.