Science on feeding extremely underweight babies should be clear to regulators | Opinion

As a nurse, I’ve spent my career earning the trust of patients and families. I’ve earned that trust by being honest, by communicating clearly and by doing everything in my power to get patients the care they need. That’s the job.

I was reminded of the importance of trust in healthcare after I learned about a group of leading pediatricians and neonatologists who sent a letter to the Department of Health and Human Services in March. The letter concerned the lack of clarity the federal government is providing parents and hospitals when it comes to the nutrition given to very sick premature babies born with extremely low birth weights. The doctors assert that rather than following the science and speaking with a clear voice, government regulators are sending mixed messages that are putting lives at risk.

As a health professional, I believe the failure of the government to provide clarity about life or death issues is a serious violation of trust. Regulators need to start acting like the families they serve are counting on them, because they are. That’s the job.

Here is what is at stake.

Over the last five years in Washington, about 66 babies out of every 1,000 were born weighing less than 5.5 pounds. These babies, most of them born premature, were considered low birthweight. Among these babies, a very small percentage were born weighing less than 2.75 pounds, which is considered very low or extremely low birth weight with special nutritional needs.

For all newborn babies, research shows that human milk provides the best nutrition, but for extremely low birth weight babies, human milk alone cannot meet their caloric and protein requirements. These babies must be fed additional nutrients through something called fortifiers, which can be made from cow milk or derived from human milk.

This is where the lack of clarity comes in.

Among the many risks faced by extremely low birth weight infants is an intestinal disease called necrotizing enterocolitis (NEC). This is an infection of the bowel that can result in terrible complications and sometimes death.

As the doctors pointed out in their March HHS letter, there are now more than 20 studies showing that feeding these specific baby fortifiers made with human milk, rather than cow milk, can reduce the risk of NEC.

Despite the growing evidence, the federal government has yet to issue guidance clearly stating that for this specific population of babies, being fed fortifiers made from cow milk is associated with higher rates of NEC.

Parents deserve better.

Behind the scenes, big formula makers like Abbott Laboratories and Mead Johnson are not doing enough to help. Instead of working to ensure families and providers have the best information, manufacturers seem more focused on keeping critical details out of sight.

Here’s one example. In sworn testimony, a former medical director at one manufacturer admitted the company has been “notified repeatedly” by hospitals about cases where its cow milk-based fortifier was associated with infants developing NEC, some fatally. The company never reported these incidents to health regulators.

This year, Abbott has even hired lobbyists who are appealing to Congress to shield them from lawsuits. Actions like this suggest manufacturers are prioritizing reputation over public health. That is a mistake, and Congress should not compound it.

When the tiniest of lives are at risk, the answer is not to hide bad information. The public is capable of understanding that cow milk products are totally appropriate for most babies, and even preemies, but not the best choice for the most fragile and sick among us.

Trust isn’t a given in health settings. It is something professionals earn every day. If the government and formula makers are willing to be honest, clear, and transparent, we can give parents and providers the clarity they need and the confidence to do what’s best for the babies who weigh the least.

Brandi Cline is a pediatric registered nurse. She lives in Puyallup.