Rules to Engagement: Families in the NICU

Written by Michelle Allen, Service Coordinator, Mecklenburg County CDSA

So you have a referral that comes to you for a baby that is still in the hospital.  You are scheduling your visits and preparing yourself for next steps.  The parents you see might at first seem scared, defensive, unsure, or feeling helpless.  But what you know is coming next is being able to see parents as strong advocates, knowing more than everyone else about their baby, having ideas about what can help their baby get better, and finding out they have a voice.  You know, just being moms and dads.

Engaging a family for the first time can be somewhat daunting, and I imagine for the parent as well, especially when the little one is still in the neonatal intensive care unit, or NICU. Referrals from the NICU are for babies who either have an established condition that makes them automatically eligible for the Infant-Toddler Program or who may be at risk for developmental delays.   As an early intervention service coordinator for over 8 years, I have enjoyed working with the little babies that start out in the NICU and their families that come to us for support.  The relationship building process is truly unique for these families.  I get nervous every time I meet a family because I never know what is going to happen when I get there.  I am always trying to convey my genuineness in my contact, and I try to focus on being empathetic by actively listening to parents and really meeting parents where they are.   My primary goal is to build trust.

I am asking them to build a bond with a stranger they’ve just met, who is asking for access into their lives and to their very sick baby.

I use this time to focus on simply building a relationship with the parent while providing important information about the program and its philosophy.  My initial visit paperwork is important, but building trust and sharing information are more important to me.  This starts with reading parents’ cues when they come into the room at the hospital to meet with me.  They’re there to see me and hear about our program, but they sometimes have more on their mind at the moment, whether they’re checking the clock to see if it’s time to feed the baby or wondering how she’s doing today.

I am often reflecting on ways I could better engage a family and improve my way of explaining early intervention services in general.

Sometimes, I question my abilities if a family doesn’t enroll or I lose contact.  Nonetheless, I try to remember that we are all people, and families in the NICU are in a truly delicate state.  Some families are harder to reach or aren’t ready to engage, but I am always trying.  By the time I meet them, they are feeling overwhelmed and stressed out.  Some may cry, some may even seem indifferent, some become impatient or even angry.  Some are not sure of what they want or what they need. They may be grieving not having the “normal” pregnancy, birth, or even the child they expected. Families have conveyed to me how upsetting it is when they have to leave the hospital each day without their baby.  “It’s just not supposed to be like this.”   

I usually take a moment and remind myself that these parents are often in the grieving process in some way or another.

I reassure each parent of their own strengths and that early intervention is here to provide as much support as needed.  This is a unique opportunity to empower a family and use that to help them be their child’s first teachers.  Moms and dads don’t deal with what’s going on the same way or have the same priorities – one may be more focused on visiting and bonding with baby, but the other may be thinking about fixing the things that might be wrong.  I think of myself as being a chameleon with each family and meet families where they are.  The stuff I need to do is important, but I think the connection with the family is more important.

Sometimes it’s hard to “sell” the importance of focusing on learning within daily routines when the family is thinking about therapy.

Sharing the philosophy of the program and explaining the support of early intervention services at home, as well as how it differs from the medical support and therapy they have right now in the hospital, is key, but often not easy.  When  I ask them what they know about early intervention, our conversations in the beginning are sometimes dominated by questions from the parents about how much and how often physical, speech or occupational therapy can come to their home after discharge.  Sometimes, parents do not know why their baby is receiving these services in the hospital, but they want to get involved to do as much as they can to help their baby.  Some parents at this point have been told by the doctors in the hospital about the risk factors associated with their child’s prematurity or other medical diagnosis.  Most parents are wanting to “get ahead of the curve” and “prevent” any potential developmental delays, and parents will typically share what exercises or stretches they’ve been told to do or exactly how to hold their baby for efficient feeding.

I remind each parent that they are far more valuable in promoting their child’s development than anyone else and explain that learning happens all the time.

A colleague of mine says that we don’t have a crystal ball, and we can’t predict what will happen down the line.  Early intervention helps to build off of the natural bond between babies and parents/caregivers, the important people the baby trusts and sees all the time, to make gains in their overall functioning throughout the day.  Their baby attains skills naturally and within his familiar day, doing things he is interested in.  Fundamentally, I explain the importance of the Individualized Family Service Plan (IFSP) and how it can capture the strengths and abilities their baby has, and also how it describes daily routines as learning opportunities for both the baby and the parent.  Physical therapy, occupational therapy, and speech therapy are simply tools we can draw off of to address family priorities and develop more creative and resourceful activities when a family needs more help.

“Please go and see your baby – I will wait for you.”

Families are juggling a lot – when we meet them and they’re in the middle of a crisis, we may hear, “My baby almost died,” or “They’re telling me that my baby may never talk to me or walk.”  It’s a lot to take in.  They may even be referred to the chaplain or palliative care to take in that responsibility, and parents don’t always know what to do with that information.  This is why I want to continue to work with families who have had these experiences in the NICU – I think they often want that bond, talking about their lives with total strangers.  They have a heavy load, and now they have someone to help to share it.


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