21/05/2026
A must-read from Michelle Valiukenas of the Colette Louise Tisdahl Foundation — her Letter to the Editor in the Chicago Tribune on why NICU families must be included in every decision.
So proud to share my letter to the editor in the Chicago Tribune It's so important for NICU families to be appraised of all the options, risks, and potential outcomes so that they can make the most informed decision that is best for their family. Not doing that is invalidating to their experience and role as parents.
Link in the comments and letter text below:
In a recent op-ed referencing a $70 million jury verdict against infant formula maker Abbott, Dr. Alexander Crider argues that the real hidden cost for premature babies is that they could lose access to critical nutrition.
That scare tactic omits one significant fact: A clinically proven alternative to cow milk formulas has existed for nearly two decades for the smallest premature babies. Specialized preterm infant nutrition made from human donor breast milk is widely available in NICUs, but many parents are never told this option exists.
Parents also aren’t told about the increased risks associated with cow milk nutrition and necrotizing enterocolitis (NEC), the potentially deadly intestinal disease at the center of the jury verdict. While larger preemies may be able to tolerate cow milk-based products, complications decrease and survival increases when the smallest preemies are fed solely human milk nutrition, free from cow milk and other additives.
Every NICU parent deserves complete, honest information, including all available nutritional options, so they can work directly with their care team to make the best decision for their baby. During the trial, Abbott’s expert testified it would be ‘cruel’ to discuss NEC risks with frightened mothers, a position the judge called a ‘sexist trope that women are too emotional to handle difficult facts.’
As a mom to a NICU baby who passed after nine days and the leader of an organization supporting NICU parents, so often parents feel like they have to ask for permission to be part of their baby’s care. The evidence overwhelmingly finds that involved parents lead to better outcomes for babies, but these parents cannot truly be involved if information is kept from them to “protect them.”
NICU moms are some of the most incredible, passionate, strong women I have ever known. What is cruel is not allowing them to be the amazing moms they are by withholding valuable information. The humane and responsible thing is to allow parents to learn all of the facts, information, and risks and then to make a decision with the medical team. Parents do not want to go rogue, they simply want to know all the options available. It is the duty of medical providers and the industry as a whole to inform parents of all the options available, not to pick and choose what they should be told.
Information and education are at the heart of these NEC lawsuits, not a desire to eliminate formula or punish a manufacturer. Parents are not asking to practice medicine. We are asking to be told the truth and treated as partners in our children's care.
If we want fewer NEC tragedies, let's start there.
