Advocating for Nutrition in the NICU

Deb Discenza, CEO of PreemieWorld

This blog post made possible by Prolacta Bioscience.

When I was in the NICU with my 30-weeker, Becky, I struggled to advocate for myself and my daughter but it was daunting.  I assumed the team knew better what my daughter wanted.  Had I known that fortifying my breastmilk with bovine-based fortifiers would be a likely reason Becky got sepsis, a deadly infection, I would have been pushing hard to push for a 100% human-milk based diet.  But what did I know?  I was not a doctor, nurse or nutritionist.  It turns out that 17 years later moms are a force to be reckoned with armed with studies, information and more.  It really is possible to advocate for an exclusive human milk diet for your tiny preemie under 1250 grams (about 2.5 lbs.).  Meet Andi Petito, a micro-preemie mom that did just that.  

DEB:  Andi, you have quite the story.  Please tell us about River. 

ANDI: When I was 21 weeks pregnant, my husband, Tyler, and I went in for a standard anatomy scan. During this scan the tech became very quiet and excused herself to go get the doctor. When they came back into the room they informed us that the ultrasound showed that my cervix had begun to dilate and my amniotic sac was bulging into my vaginal canal. My OB did not have privileges at the hospital that was closest to the scan location, so they had to find a new OB to take me onto their service, and I was immediately sent to the hospital to remain on strict bed rest and try to remain pregnant as long as possible. At 24 weeks and 0 days, the day I hit what is widely considered as the first day of viability, I went into labor. River was born 11” long and weighed just 1lb 7oz. She was put on CPAP and taken to the NICU. Three days later she required resuscitation and needed to be put on a ventilator. A few days after that her bowel perforated and she needed to be transferred to a surgical NICU, that was thankfully at a hospital just across the street. After multiple surgeries, a significant time on a ventilator, and a total of 129 days in the NICU, River was finally sent home on oxygen and with an NG tube.

DEB:  You wanted to provide River with an exclusive human milk diet.  Did you know what that meant?  Did the NICU team explain that to you?  

ANDI: Because of River’s history of bowel perforation, I became very anxious about how fragile her bowel was and even more anxious about her being high risk for NEC. NEC is difficult in that we don’t know exactly what causes it or exactly how to avoid it. I began diving into studies that aimed to research ways to lower the risk of NEC in preemies. The two most promising and most easily implemented interventions I found were the use of probiotics, specifically B. infantis and L. Reuteri, and maintaining a strictly human milk diet. When it was time to begin fortifying my breast milk I met with a panel of River’s medical providers and explained my desires for her diet. I was informed that they did not agree that there were significant benefits from the use of a strictly human milk diet and that they were planning to move forward with providing her a Bovine milk-based fortifier.

DEB:  You wanted to get a 100% human milk-based fortifier if River needed fortification of your milk.  How did you advocate for your daughter and yourself?  

ANDI: I presented the doctors and nurse practitioners with multiple studies showing decreased NEC risk and decreased cost of care related to reduced length of stay in the NICU. I was unable to win them over that way, so I ultimately put my foot down and refused to allow them to provide my child with any bovine milk. The ball was in their court and they decided that it was better to give in and provide River with the human milk fortifier that Tyler and I knew was in her best interest.

DEB:  You are an amazing advocate!  What do you recommend parents in the NICU do to advocate for themselves and their baby around an exclusive human milk diet?

ANDI: My biggest recommendation for parents in the NICU is to make sure that you arm yourself with facts and data from reputable sources. An easy way to do this is to use Google Scholar, this means that your search results will all be reliable studies and not random blogs. I know the data can feel overwhelming, but you can read the abstract portion of the study and the findings and recommendations sections. This gives you an idea about the relevant information without getting overwhelmed by the figures in the methodology sections, etc. Prolacta has also made it super easy and put relevant studies on their website, you can print these out and bring them to the healthcare providers. While the studies may not have been all we needed to arm ourselves with during our Prolacta fight, they did help us when we presented findings on interventions for ROP. River’s ophthalmologist happily reviewed the studies Tyler found and based her interventions to save River’s eyesight off of the studies we presented. I know it can seem exhausting to tackle, but you are your baby’s number one advocate. Do not be afraid to request multidisciplinary meetings to collaborate with your baby’s care team!

DEB:  How is River doing today?  You must be so proud of her.  

ANDI: River is now 3 years old and a happy healthy and strong kid! She is off all medications and done with all therapies and is now just seeing her pediatrician for routine check ups. She does still see ophthalmology and audiology twice a year with the intention of catching any potential issues early if any were to arise. River has been off of oxygen since the end of 2017 but since we do not know the full effect of the long term ventilator use on her lung tissue we have been told by her pulmonologist that she is at higher risk for complications from COVID-19, so we are in pretty strict isolation, which is difficult, but we would do anything to keep her safe and healthy.

DEB:  Wonderful!  You are an incredible mother and advocate for your daughter.  I hear you on the isolation but it is the right thing to do considering River’s health history.  Thank you, Andi.  

Are you that parent that is trying to figure out the best possible way to help prevent Necrotizing Enterocolitis and other deadly infections in your micro-preemie but don’t know where to start?  We have you covered.  PreemieWorld has created two resources for parents to help them understand and advocate for their baby in the best way possible.  First one is our Preemie Family Special Edition, a newsletter that boils all of the information down for you and more.  The second one is Helping My Very Tiny Baby Thrive, a step-by-step advocacy and action tool to help you get it done. It’s like having me with you along the way. 🙂  – Deb