Work to Build Genuine Connections with Parents :

Having a preemie makes you feel as if you stepped through the looking glass. Just a moment ago, you were a fully functioning part of the world, an adult with the ability to relate to other adults as peers. Suddenly, the world doesn't look the same and you don't feel like an adult anymore.

As medical professionals, you are familiar with this world. You have a context for what you see. Parents have just been cut off from familiar landmarks and sent on this journey alone. Respect their understandable feeling of fragmentation, and simply be with them as they struggle to rebuild a universe that they can recognize. Even when there is not something concrete for you to do, your presence and focused attention bring strength and comfort.

"My husband held my hand through the entire surgery, as did some blessed medical student. I'll never forget her. She seemed so angelic to me. I shook uncontrollably from the drugs and started crying. She was so soothing. I held her hand just as tightly as I held my husbands." --Rebekah

Provide Honest Information, Clear Explanation, and Context :

Give families time to orient not just to the NICU (or other specialized setting), but also to each new bit of news that you give them. Be aware of your own preconceived notions of what parents "need to know" or what you imagine that they can deal with. Instead, listen carefully to what you are being asked. Answer what you can, and acknowledge the anxiety that comes with not knowing. What parents imagine may be far worse than reality. Remind yourself that information takes time to integrate so be patient and expect to repeat yourself. Soothe and support them in honest ways, not superficial ones.

"I was left with the much dreaded feeling that I was not being told all that was going on with me and with the babies. Dr. H talked to my husband and they felt that "sparing me" was best for me, when in reality, it left me feeling insecure and not able to trust anyone." --Sarah

Provide Support without Judging :

Respect parents enough to allow them to feel all their jumbled emotions without running away or minimizing what they feel. Remember that it's very likely that these were competent, capable, bright and vigorous people prior to this crisis, rather than anxious, clingy, angry or vindictive people. Admire and support their growing skill, their confidence, their intuition, and their perceptions. Begin to rely on them as reliable sources of information about their children. By relying on them, their belief in themselves grows and becomes steadier. Look for the cohesive and competent parts of them and nurture those. Remember that this crisis can happen to anybody.

"We were allowed full access at all times to medical records. They trained us for emergencies and on her equipment. Medical interventions were, again, out of my control. However, as soon as I was able to begin dealing with the reality of having had a premature baby, my husband and I began taking back control by handling as much of her care as we were able to. I believe that helped all three of us." --Cindy

Promote Attachment Between Parent and Child :

Teach parents a whole range of signals that they can notice and nurture as they bond to their baby. Teach parents how to touch, to soothe, and to connect with their baby. Demonstrate your confidence that they will not cause their child harm. Support them as they learn to tune in to their child and attend to their child's needs. Explain the power of attachment and assure them that they have a lifetime to nurture the bond between parent and child. Many parents consider this to be the most important, meaningful and long-lasting thing that you do.

"Frankly, I was terrified of picking her up--she was so tiny and weak. I was actually somewhat relieved that the doctors didn't want me to hold her at first. In just two days, though, the nurses told my husband and me about Kangaroo care. I held her frail body against my bare skin and slowly started to feel like yes, this was my child." --Rebekah

Make Families a Priority :

Remember that parents are ultimately the ones who will raise and nurture this child. Remind yourself of the bottom line here – and that is facilitating the creation and stabilization of families. Your job is to partner with them in their child's care; their job is to care for their child in whatever ways they can. Help parents find their way and figure out how to behave in this foreign and overwhelming situation. By supporting them in these ways, you are providing real support, not superficial support.

"On the night they (first born twin preemies) were born, I knew that my life would change forever. I didn't yet know how, but my life would never be the same." –Richard

Help Parents of Preemies Build a Community :

Remove obstacles preventing families of premature babies from finding comfort in the experiences of others. Do what you can to create an environment in which parents can talk and support one another. When parents of healthy full-term babies look around, they see endless numbers of peers who understand what they are seeing and feeling. Parents of preemies have no such peer group when they are kept isolated from one another. The comparisons that parents make, the discussions that they have are a normal part of acclimating to the specifics of preemie parenthood. Whether a family's preemie lives or dies, be aware of the support group and mental-health resources that are available in your area. Do not let these parents travel this road alone.

"Thank you. When I first read your questionnaire*, I cried for hours. I did not know that the feelings you listed were felt by anyone else. I thought they were unique to me. How could I have known?" –Cindy

Mara Tesler Stein, Psy.D. (1999)

(773) 338-2980

*These quotations were gathered during the course of interviews with parents of premature babies for the soon-to-be-published book, The Emotional Journey of Parenting Your Premature Baby: A Book of Hope and Healing (NICU Ink)

For the full text of this site: http://www.preemie-l.org/marachicago.htm