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:
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.