Having a Human Milk-Based Fortifier Would Have Made My Preemie’s Life So Much Better

Deb Discenza, Founder and CEO of PreemieWorld

My daughter Becky was born in 2003 at 30 weeks gestation and weighing in at 2 lbs. 15.5 oz.  She stayed in the NICU for 38 days and came home on oxygen and a monitor and we struggled with feedings ongoing in which she had a hospital readmission. After that she followed up regularly with a half dozen specialists for the next year or two each.  An exclusive human milk diet is key, I know that.  But I also know that Becky needed more than what the NICU could offer at the time.  Point blank, the Prolacta human milk-based fortifier, not approved yet, could have changed Becky’s course of life dramatically.  

I want to be clear that I decided to pump in my postpartum room within 8 hours of giving birth assuming that I needed to try and provide breast milk for my daughter.  The tiny yellowish substance that came out seems questionable so I asked my husband to take it to the nurse and see if we should keep what we collected.  He came back a small while later breathless, saying that the nurse rushed him down to the NICU with it, saying it was “Liquid Gold.”  I then got connected with the lactation consultant team and was set up with a rental pump and kept going. Becky grew, I pumped.  I attempted to breastfeed, and my daughter struggled to latch on, so I kept pumping, not realizing that it was only a practice session, and my daughter needed more time.  At one point I was confused when handed a ready-made EnfaCare (bovine fortifier) bottle to feed my daughter.  I assumed the team knew best and did not question it.  

Unfortunately, Becky later got sepsis several weeks in and we almost lost her.  After that I had our NICU Nurse bully me and ask me pointedly why I did not breastfeed my daughter and how she did it with her kids.  I looked at her, hurt and unable to respond to this rudeness because again I assumed they were the experts of my child?  But I grew angry because I was pumping so much breast milk for my daughter it filled up our freezer and we had to go out and buy a full-sized freezer as well.  I was working very hard, and my in-laws felt I should report the nurse to the Medical Director, so I did.  But the sting of that accusation stayed with me even as I brought my daughter home.  I attempted breastfeeding several more times and my daughter really struggled to latch and feed.  

So many mixed messages and obstacles in the NICU.  I speak about that quite often.  The NICU staff may be medical experts, but I knew my child first.  And that honestly was how I realized that I am the expert of my child.  My maternal instincts were there early on though I allowed mixed messages and mixed emotions to carry me away from this reality.  Very quickly I gained my confidence but the NICU’s control of my child made me feel impotent to truly do anything to help her.  

What I now know is that my daughter is 20 years old, and I can look back with 20/20 vision on everything and see the many cracks in the NICU care.  There are very few NICU-approved medications and treatments for preterm infants.  The gold standard is breast milk, but the reality is that preterm infants are desperately trying to gain weight in a hurry to survive and up until Prolacta’s human milk-based fortifier was approved, the only choice was adding infant formula to the mix.  Knowing all of this I have to add that the outcomes of preterm infants are truly sketchy, and I had no idea but kept asking professionals about my daughter’s walking gait for over a decade once she finally walked at 20 months old.  At 13.5 years old, a teenager, Becky was diagnosed with Cerebral Palsy with a specific diagnosis of mild spastic diplegia. I was super angry and apologized to my daughter in the car. She said she knew something was wrong.  I couldn’t hide stuff from, and she could not hide things from me.  Over the years since the diagnosis, I came to realize that her “mild” is not mild at all due to stiffness, pain and ease of fatigue.  

So as preterm infants around the world are working through the NICU stay, we must make sure that standard of care is a human milk-based fortifier not a bovine based fortifier. Why?  Because the NICU team may be medical experts, but the parents are the experts of their child.  And the two need to work together to make sure this tiny infant has access to all possible treatments which include nutritional products that have been proven to improve outcomes long term.