When a baby is in the Neonatal Intensive Care Unit (NICU), the patient family feels instantly isolated in a foreign environment and beholden to the team for permission to have any connection with their child.
In a very personal sense, I know this feeling all too well. I can remember my daughter’s 38-day stay in the NICU like it was yesterday. Within seconds of thinking about that time, my mind connects to my body and my muscles tense, my mouth goes dry and I feel instantly powerless in my environment. As I write this my daughter is now a teenager and you would think that I would be way past those emotions now. I must be the mom of a preemie. You never truly get over the emotional roller coaster ride. That is just reality.
So imagine a doctor attempting to work with a family in the NICU during various challenges even though their main focus is the infant while alternately juggling the needs of so many other infants in their charge right now.
And then imagine a family that is struggling to come to grips with the reality of the situation that their infant is there in the NICU, fighting for his/her life. And watching a mother go through extremes of emotions from joy to fear to anger to sadness to numbness in the space of a day, an hour, or even 5 minutes. The course of her child’s life has suddenly changed dramatically from the picture-perfect pregnancy, birth and childhood that was eagerly awaited to something very different. As a mother she should be in charge of her child’s needs, not asking permission from a myriad of NICU professionals. Reality is striking within her with startling clarity and that clarity is worse than standing atop a cliff looking down into the abyss.
So how to do you bring both parties together and connect them in partnership for the good of the child? Building mutual trust and respect is a key element in the parent/pro relationship, one that should leave behind any preconceived notions or opinions. There is professionalism but that is not the whole story. It needs to go deeper on both sides.
Remember the mutual goal. You both want that baby to survive and to go home and thrive. Make sure you are focusing on that mutual goal together every single day at every single meeting. There were numerous times during my daughter’s NICU stay where I felt as if the team took over my daughter’s care and unintentionally pushed me out of the way. Wasn’t I the best person for my child, the nurturer, the protector? In my mind then, I wondered why I wasn’t considered part of the NICU team from the start rather than just the hand-off at discharge time.
Respect. It may seem like a simple request but in a NICU environment, it isn’t at all. Too often parents are shoved aside as “experts” of their child because a medical professional is deemed the new expert to “fix” the situation. Respect comes from both parties working together on a common level, one that can have a conversation that is true “give and take.” Everyone brings something special to this conversation about the child and everyone needs to remember that. I distinctly remember being so proud of myself bringing full containers of my breast milk to the NICU each day. As I handed it in, I had hoped for a “great job!” and other compliments to push me to keep going as pumping breast milk was exhausting and a huge timesink throughout each day. Yet, all I got was, “Okay, thank you.” Really? Isn’t my breast milk supposed to be life-saving medicine for my child?
Trust. Trust comes from not just expertise but also through connection, through remembering the mutual goal (the child) and respect. It can build in a nanosecond it can also dissolve in that same amount of time. Trust takes careful and continuous tending by professionals. While I did not use Dr. Google for everything that happened to my daughter, I will say there were times during the NICU stay where a particular nurse was a bit overbearing about my breastfeeding my daughter (my daughter had a weak suck, and remember I was pumping like crazy so this nurse went way out of bounds in scolding me rather than using the opportunity to be positive and support me in continuing what I was doing while attempting solutions toward possible breastfeeding).
Of course, all of these elements (mutual goal, respect and trust) are key especially as things get tougher, as the discussions may lead to bad news as life-threatening illness like Necrotizing Enterocolitis (NEC) or a potential disabling condition like Retinopathy of Prematurity (ROP) or a brain bleed like PVL, IVH and more. All of the scientific words, the medical test records and the professional’s white coat are helpful but pale in comparison to outright compassion for the family and their plight. Respect, trust and focusing on the child and reminding the parents that they have a huge impact on that infant’s outcome makes the biggest difference beyond expertise. I was very concerned about my daughter’s feeding issues prior to discharge yet no one heard me out. No one discussed with me how to address those concerns. So we took our daughter home, limped through 5 days with alarms going off on the monitor and not sleeping only to have a re-admission into the pediatric unit. It was endlessly frustrating and I had finally felt enough was enough and started taking action. As it turned out, I was right. My daughter was struggling and needed a lot of help to get back home. That was when I realized that I was a key person in this insane situation.
The same elements can also make a huge difference when the situation is dire and the infant is dying. Parents need to feel like parents and having a team of professionals who give them that respect, that time and surround them (yes, be there) during this really tough time is incredibly important. For everyone, this is an emotional time that is best played out together not putting up walls and disappearing from the situation. Parents seeing professionals surrounding them and being emotional will help them not only through the extremely difficult moment right now but later on well after that point. The pros, too, benefit in the same manner.
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. (https://PreemieWorld.com). She also runs the free Inspire Preemie Community, 40,000+ strong at http://preemie.inspire.com