Helping Preemie Parents Untie the Knots of Fear and Hope
Posted by Peggy Kaufman
This week I received an amazing letter of gratitude from a mother who has recently been served by the Oliver, Ian and Serenity Wolk Fragile Beginnings program of the Center for Early Relationship Support®. Her remarks are extremely gratifying and a strong testament to our work. I choose to share this today on the occasion of the first national Parents of Preemies Day as her beautiful words provide a glimpse into the complex emotions experienced by parents whose babies are born prematurely or hospitalized in a neonatal intensive care unit. It also demonstrates the powerful impact that support and understanding can have on the families of preemies – something all of us can provide!
I am pleased to share, with her permission, an excerpt from this mom’s letter:
I’m writing to share how fantastic the Fragile Beginnings Family Liaison has been with me over the past months. I have an infant daughter who was born extremely early and spent the first 3 months of her life at the BWH NICU, where the social worker referred me to Fragile Beginnings. I was both entirely ready to bring Sylvie* home from the hospital and terrified that I wouldn’t be able to take adequate care of her. I also had a lot of conflicting questions and emotions more generally: was Sylvie really OK? What would happen next? Would she need to go back into the hospital? I am not a nurse, nor do I have other children, so I didn’t have any idea of what kind of daily routine I’d need to establish. Most of all I felt a large and seemingly-permanent knot of pain, love, fear, and hope for my daughter.
From our first meeting, my Family Liaison asked such good questions about how I saw the next steps and what I thought I’d be doing when Sylvie came home. I can’t say that I magically relaxed or felt better, but I did feel interested and kind of disoriented, in a good way (!) by her perspective: she didn’t ask questions about my ill child, she asked questions about my baby and our plans as a family! Having a child in the NICU, it’s hard to separate ‘child’ from ‘medical emergency’ or ‘patient’. I loved my daughter beyond belief from the moment I had her, but I couldn’t separate loving her from medicalizing her. Her approach, from the very beginning, started me on the path towards making that distinction. Her loving and gentle regard slowed down the pace of my anxiety about how Sylvie was surviving outside the NICU. She gave me books about baby development and experience that showed me that babies recognize and just need love from their parents. She brought me photocopies of articles about infant development, so I would worry less. Very premature infants are at risk for developmental delays and some disabilities, and when my anxiety about Sylvie’s progress grew, she brought me other books: how to cope with the emotional journey of parenting a preemie; how to work through negative emotions; how to process some of these events. She helped me find someone to talk with about writing about my experience. But most of all, she sat with me week after week, and helped me ease into being a mother. She helped me see Sylvie as my beloved daughter who was proceeding happily on her own path, rather than as my beloved daughter who was a medical patient with special needs lurking around each new developmental milestone. I can’t really describe HOW she did this, but it’s important to me to state that she did somehow manage to float Sylvie towards me in a bath of warmth and approval and comfort and confidence. As much as the doctor who delivered her or the medical staff of the NICU who kept her alive, Fragile Beginnings gave me my daughter.
*Name changed to protect privacy.
Peggy H. Kaufman, MEd, LICSW is the founding director of the JF&CS Center for Early Relationship Support®. With a background in perinatal emotional health and the growth and development of parents, her interests include the earliest relationships. Ms. Kaufman is the recipient of multiple awards for her groundbreaking programs and her commitment to increase awareness of postpartum depression and maternal mental health.