Establishing Trust in the NICU
Blog Posts from Deb Discenza


Establishing Trust in the NICU: Parents and Clinicians

My co-author, Nicole Conn (little man) and Mom to preemie Nicholas now 14 years old, coined the phrase that the Neonatal Intensive Care Unit (NICU) was “like science fiction.”  She is correct.  A world locked off from the rest of the human race, with an intensity like no other hospital unit, the NICU is filled with beeping and pinging medical equipment, a constant stream of vigilant caregivers and the tangible sense of stress.  

Parents walk into the NICU in shock and in fear of what is to come in the next hours and days and even months.  Trying to be a parent in this world is difficult and much of that control has just been relinquished to the team of doctors, nurses and specialists that surround their precious infant.  So many emotions bombard them at one time and their ability to protect their child from pain, from poking, from germs leaves them quite impotent.  

I know this personally. I was totally numb with shock as I worked through every single day in the NICU with my 30-weeker daughter but maintained the “smiling Mom” demeanor like a suit of armor.  Each night at home I would try to be working at my desk playing catch-up and always ended up clicking on a video my father-in-law had made of my daughter in her first 24 hours in the NICU set to a haunting a capella version of “The First Time I Ever Saw Your Face.”  Every time I cried hard to that video, trying to sort out what had happened to the sudden end to my pregnancy, feeling as if I had failed my daughter.  

One of the hardest moments for me was feeling like a mother.  From minute one I automatically relinquished control of my child to a team of professionals in the delivery room who took her straight to the NICU after a briefly holding her up to me.  I felt more like a visitor and less like a mother.  

Building trust in the NICU is key to helping that infant thrive, yet the push-pull of the parent-clinician relationship can set the tone for a long struggle.  How do you as a professional start trust with a total stranger and one that you just met in what is likely some of the toughest moments of life?  Not easy, but doable.  Some tips:

  • Greeting: Greeting a parent for the first time is key to setting the right tone.  And that tone should be focused on an open and honest working relationship.  Be pleasant while also being professional.  And start off with “congratulations” because the parents have had that joy ripped from them entirely and may have family and friends who don’t have any idea what to say or do.
  • Experience: You want to convey to the parent that you are the best person to help their infant.  A resume is not required but a proper introduction to you and your role in their child’s care is key.  
  • Personal, Personal, Personal: Making it personal can cinch the trust factor.  Had a baby in the NICU yourself?  Had a child in the hospital at one point or even in the ER for something really scary?  Anything that can help them know that you relate to their anxiety will be very helpful.  It meant a lot when I had a nurse say to me one day, “I didn’t understand how tough this experience was until I had my baby early.”  It validated my stress and the difficulties I was having which meant the world to me.  I thought I was alone in this.
  • Google: If there is a complication, you know that parents will Google it.  They will stress out over horrific studies and statistics and bring it to your attention. Be up front at the beginning and note that while you totally get their need to find ways to help, Google is not an expert of their child. Rather the parents themselves are experts and the doctors and nurses are the medical experts and together they provide the best information possible.  In other words it is a partnership.  So when they ask questions, take that time early on and answer them with full information in a respectful, partnering tone.  That will build trust so that when the emergency does happen and you need their trust in a very timely manner, you will get it without fail. 
  • Regular Check-Ins: To avoid quarreling, while you are updating the parent on the latest events, also take a quick second to ask how things are going with the family at home, how things are going for them in the unit.  You may find there is a difficulty that could be easily resolved with a referral to a social worker, to a lactation consultant or perhaps the change in nursing assignments.  While you are caring for the infant, know that part of that care includes the parents.  Afterall they on the job, too, and they are part of your team.  

Working with families is some of the best medicine professionals can provide in the NICU and for the long-term. Taking special care as a doctor or nurse would in assessing an infant’s needs, this should be the same with the family members.  They want to help and while they do not have the medical degree, they do have the parent degree.  And remember, they end up taking that baby home so all of the success in the NICU scenario is for nothing if you don’t set up those families to be confident parents and strong advocates for their child.    As for me, I had to learn to advocate the hard way.  While that allowed me to grow into an advocate for preemies internationally along with being a vigilant advocate for my daughter’s needs, a true parent/professional partnership from the beginning could eased my mind immensely.  

Deb Discenza is the Founder and CEO/Publisher of PreemieWorld, LLC and the co-Author to The Preemie Parent’s Survival Guide to the NICU.  (  She also runs the free Inspire Preemie Community, 40,000+ strong at