Every day in the United States, one baby dies from necrotizing enterocolitis (NEC), a devastating intestinal disease that primarily affects premature infants. For parents and healthcare providers in the NICU, these statistics represent more than just numbers – they represent tiny warriors fighting for their lives and families forever changed by this devastating condition.
But there's hope on the horizon, backed by decades of research: human milk can help prevent NEC and improve outcomes for our most vulnerable infants. Let's explore why every drop of breast milk matters and how innovative preservation methods are helping ensure more babies have access to this life-saving nutrition.
Understanding NEC: A Critical Challenge in the NICU
Necrotizing enterocolitis moves aggressively and can turn critical within hours. Upon diagnosis, many babies have only a brief window before their intestines become necrotic, potentially leading to sepsis, multisystem organ failure, and death. Each year, more than 3,500 infants in the United States develop NEC, with mortality rates reaching 50% or higher in the most severe cases.
The NEC Society, founded by Jennifer Canvasser after losing her son Micah to NEC, has been at the forefront of prevention efforts. "Losing Micah to NEC has compelled our family to give and do all we can to prevent this devastating disease," shares Canvasser. "Through research, education, and advocacy, we're working to build a world where babies never experience the devastation of NEC."
The Power of Human Milk in NEC Prevention
In October 2024, the FDA, CDC, and NIH released a joint Consensus Statement on premature infants and NEC.
The statement makes the point that there is no conclusive evidence to suggest that infant formula causes NEC. Rather, it is the absence of human milk that is associated with an increase in the risk for NEC.
In our view, the most important sentence in this statement is this: "there is strong evidence that human milk is protective against NEC."
Some research suggests that an exclusive human milk diet may be linked to better outcomes and the avoidance of diseases like NEC, especially during “critical exposure periods” post-birth:
“Recent evidence suggests that the impact of human milk on improving infant health outcomes and reducing the risk of prematurity-specific morbidities is linked to specific critical exposure periods in the post-birth period during which the exclusive use of human milk and the avoidance of formula may be most important.” Meier et al (2010)
Clearly, human milk seems to be the key to preventing NEC. But why is it so effective? It comes down the complex nature of human milk. Rather than isolating its benefits to one component, it seems to be the complex composition of bioactive elements in human milk that work together to:
- Protect the infant gut
- Support immune development
- Provide perfectly balanced nutrition
- Reduce inflammation
All of which, as a whole, helps to reduce the risk of an infant developing NEC.
Innovations in Human Milk Fortification
One of the challenges in providing an exclusive human milk diet is ensuring consistent availability and appropriate caloric density for premature infants. Put simply, most infants who are born preterm will need more calories added to their feeds, a process known as ‘fortification’.
While specially formulated infant formulas are typically used to fortify breast milk, many parents may wish to follow an exclusive human milk diet due to tolerance issues or personal preference.
Recent innovations in human milk preservation, particularly freeze-drying technology, are helping address this challenge.
"I have a baby who has significant reflux and feeding issues," shared Lauren, a mother of a recent NICU graduate. "Because of his reflux, our doctor did not want to fortify with formula. We found Milkify's freeze-dried breast milk fortification service, and he's had no problems with the powder and it hasn't caused any reactions with his reflux."
This targeted fortification service works by pairing the freeze-drying of a mother’s own breast milk with hospital-grade macronutrient analysis. The analysis is performed on a “baseline sample” to establish the typical macronutrient profile of a mother’s own milk, as well as on a combined freeze-dried sample. This gives us information about the caloric content of an ounce of freshly expressed breast milk, as well as of a gram of freeze-dried breast milk powder.
With this information, a qualified Milkify healthcare professional is able to provide the parents with a custom, targeted fortification recipe – a set of instructions for making a bottle at the exact caloric density required by the baby’s care team, by simply adding specific quantities of freeze-dried powder to mom’s own milk.
However, it's crucial to note that not all freeze-drying processes are created equal, and there are important safety considerations to consider when pursuing a freeze-dried fortification strategy:
- Fortification should always be done under proper medical supervision; don’t risk the health and safety of your baby by attempting to “DIY” their medical care.
- If you plan to use a breast milk freeze-drying service for targeted fortification, ask the service to connect you with their on-staff medical provider (if they don’t have one, it’s best to work with one that does).
- Always inform your baby’s care team, such as neonatologist or dietitian, about your plans. The first step in the process should always be a consultation to ensure your baby is getting the care they need.
- Freeze-drying must occur in a dedicated facility with proper certifications (Milkify is FDA-registered and GMP-certified).
- Because infants needing fortification are often at a greater risk for illnesses stemming from microbial contamination, sterile handling techniques and other safety measures are essential when freeze-drying your milk. The milk should also never be thawed for processing, unless it is pasteurized according to established best practices.
- Be sure to verify other steps your freeze-drying service provider takes to prevent contamination. For instance, Milkify has a patented contact-free process that ensures your milk never comes into contact with equipment or utensils, minimizing the risk for contamination.
- Any nutritional values used to determine your fortification recipe should come from trained professionals operating a hospital-grade human milk analyzer. Consumer grade nutritional analysis services may not provide sufficiently accurate values, which may put your baby at risk for receiving inadequate nutrition during their fortification period. Milkify uses the Miris HMA which is FDA-approved for use in hospitals and NICUs.
These considerations will help you and your baby’s care team determine whether targeted fortification strategy with freeze-dried breast milk is appropriate in your case. They can also help make your fortification journey more successful by ensuring proper medical supervision and best practices are being followed.
Kelly, another NICU parent and Milkify client, shares her experience: "We have been fortifying my son's milk since birth due to a rare genetic disorder. When I found out about freeze-dried breast milk fortification, I knew we needed to try it. My son accepted it immediately and it has helped calm some of his reflux already from the formula fortification."
The Path Forward
The fight against NEC requires a multi-faceted approach:
- Continued collaborative research partnerships involving private firms like Milkify, academic researchers, and non-profits such as the NEC Society
- Educating parents and providers about the importance of human milk
- Innovation in breast milk preservation and fortification
- Policy advocacy to encourage support for new strategies and innovations in the fight against NEC
As Dr. Misty Good, a leading researcher in the field, states: "It is about creating a framework for collaborative teams to work together in the fight against NEC so that babies, families, and healthcare providers never have to deal with this disease in the intensive care unit again."
Taking Action
Providing preterm infants with an exclusive human milk diet at the appropriate nutritional level can be challenging. Milkify is helping to address this challenge by parents and providers with the option of fortifying breast milk with mom’s own milk. This small but revolutionary step is one more tool in our collective arsenal in the fight against NEC.
If you're a NICU parent or healthcare provider interested in learning more about human milk preservation and fortification, reach out to the Milkify team and we’ll be happy to provide you with more details about our fortification service.
If you’re a parent currently dealing with or worried about NEC, The NEC Society provides comprehensive resources for families and healthcare providers at NECsociety.org.
You can also donate to the NEC Society at this link.
Together, through research, innovation, and dedication to evidence-based practices, we can work toward a world where NEC becomes a preventable condition rather than a devastating reality.
