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Sharing the Journey of Prematurity
November 16, 2012
Sharing the Journey of Prematurity

November is National Prematurity Awareness Month. In honor of World Prematurity Day on November 17, Karin Lindfors, family liaison and coordinator of the Oliver, Ian, and Serenity Wolk Fragile Beginnings program, shares her experiences working with preemies and their parents.

By Karin Lindfors

preemieImagine…you have always wanted to be a mom. You and your partner have tried for five years to get pregnant. You have gone to countless appointments, endured dozens of procedures and suffered numerous losses along the way. Finally you make it past 24 weeks in your pregnancy. But then your blood pressure soars or your cervix shortens or you are told your baby is not growing. Suddenly you, your partner, and your baby are thrust unready into a whole new world - the Newborn Intensive Care Unit (NICU), a place of life and death, screens and beeps, and scary diagnoses -  a place teeming with uncertainties. Your baby has been born prematurely.

This is the not the pregnancy or birth story any parent expects. One in 8 babies in the United States and 15 million babies worldwide are born prematurely each year. The Oliver, Ian and Serenity Wolk Fragile Beginnings program of the JF&CS Center for Early Relationship Support (CERS) provides emotional support, developmental guidance, and connection to community resources for parents of prematurely-born babies. Fragile Beginnings seeks to nurture parents so they can nurture their babies.

Both preemies and their parents have a traumatic start.  For some babies, the NICU stay can be short, but for others it can continue for months. No matter how long, it is immensely stressful for parents to be separated from their baby; they fear for their baby’s survival and worry about the future. Families also cope with financial stresses that come from missed work and having to care for other children at home. For babies and their parents, prematurity does not end in the NICU. Ongoing medical issues and developmental uncertainties add to the stress. It can take a long time for parents of preemies to exhale and to trust that their baby is okay. 

As a Fragile Beginnings family liaison and coordinator for the past three years, it has been my honor to work directly with more than 140 families with babies born prematurely or hospitalized in the NICU for other conditions. The parents have been from the United States as well as from over 20 different countries. I often first meet with families when their baby is still in the NICU and then provide several home visits after they leave the hospital. I am privileged to hear their stories and to be a comforting, guiding presence during a vulnerable time. I also delight in spending time together with parents to help them understand and discover who their baby is as a person as well as their baby’s unique needs as a preemie.

Preemies have many vulnerabilities, but they also can be extraordinarily resilient. The same is true for their parents. Helping cultivate this resilience is at the heart of Fragile Beginnings work, as is helping families connect with each other and with the resources they need. I celebrate with families the ounces their babies gain, due dates reached, and the cherished milestones met. No parent should have to walk the journey of prematurity alone. 

karin lindforsKarin Lindfors, MA, MS is a clinician in the Center for Early Relationship Support. Her background is in infant development and intervention; she was also a Fellow in the JF&CS Infant Parent Training Institute. She coordinates the Fragile Beginnings program and has also been an Early Connections clinician.

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