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How Child Life Specialists at Cook Children's NICU Make an Impact on Infants, Families

Child Life Week: This week, we’re celebrating our Child Life Specialists at Cook Children’s who make an impact on the emotional safety of children and families in health care.

By Baylee Simmons, CCLS, Child Life Specialist at Cook Children’s Neonatal Intensive Care Unit

A child life specialist is commonly known as someone who can help a child understand and cope with his or her hospitalization, diagnosis or medical experience.

That being said, I am often asked what role a child life specialist plays in the Cook Children's Neonatal Intensive Care Unit (NICU) where patients are far too young to talk, comprehend preparation for procedures, diagnosis education or participate in play and therapeutic activities typically provided by child life. 

Great question! Child life in the NICU looks very different than in other areas of the hospital. Still, our goal is the same -- to provide support and interventions that promote emotional safety, improve patients' and families’ ability to cope, and reduce the negative effects of unavoidable stress and trauma they endure. 9

Stress and coping in the NICU

When an infant is born prematurely or with medical needs leading to a NICU admission, the whole family is affected. Most parents expect to take their baby home to a quiet, calm environment where they can heal, bond with this new baby and begin adjusting to life with a new member of their family.

A NICU admission can turn all of those expectations upside down. For the first few days, the mother is often still admitted to another hospital, the delivery hospital. While this is necessary for moms to heal and recover, it creates a lot of stress for the family. The baby’s father and/or other family members have to navigate where to spend their time, who will care for any children at home and so much more.

Patients admit to the NICU for many, many different reasons and these admissions range from a few days to many months depending on the severity of their condition and medical needs. Over the course of a patient’s admission, the stress may change but continues to bring new challenges.

Some parents grieve their first days or months with this baby not looking how they thought, some struggle to feel connected with their baby amidst the restrictions and treatments needed to grow or heal, or wonder how to support, explain things to and include the baby’s siblings without overwhelming them.

Other families find themselves unable to understand/process their baby’s diagnosis and care, juggling time between work and the hospital to maintain income, or processing a tragic situation where their baby might die and making decisions about how to honor their child’s memory or explain that to their siblings. All of that stress impacts a family’s ability to cope with the hospitalization and ultimately provide a secure, nurturing environment for their baby, which plays a critical role in their development and health. Goodwin

Child Life in the NICU

As a NICU child life specialist, I can often be found hanging a name banner in a new patient’s room, making ink prints of tiny feet or seated on the couch next to an overwhelmed parent listening to whatever troubles their mind that day. These are a few ways I begin getting to know a family, what is meaningful to them, and what individual stressors or challenges they bring to the NICU experience.

This careful assessment allows me to identify what support, education or therapeutic intervention they might benefit from on any given day. I strive to give families the tools they need to be successful in the NICU environment and overcome the stress they inevitably encounter here. That could be using my knowledge of child development to help validate or explain why their 4-year-old daughter is regressing and acting out uncharacteristically or offering a more simplified explanation of new medical equipment being used on their baby using a teaching doll or other resources to strengthen the family and siblings’ understanding. 

I make ink prints or take photos of big moments and milestones babies meet to help encourage their parents and foster that connection throughout their stay. We celebrate holidays and “firsts” throughout the unit to bring a little bit of joy or normalcy into a place where most families feel that they are missing them. And on the darkest days when families are told their baby will not be coming home with them, I offer bereavement support and the opportunity for families to choose how they will honor and memorialize their child’s last moments of life.

Child Life exists in the NICU to support the WHOLE family so that they can better care for and support their baby both in our unit and as they transition home.

About Child Life at Cook Children's

Coming to our medical center, whether for a stay, day surgery or ongoing treatment at one of our specialty clinics can feel overwhelming and even scary to our young patients. Children and teens of all ages can feel stressed or worried during their visit. The unfamiliar environment, loss of control, fear of pain and lack of routine are among the most common anxieties young patients feel during a health care encounter. The Child Life specialists at Cook Children's are here to help.

Child Life specialists work with kids and families to make their visit to the medical center easier and more comfortable. We offer your child and your family an opportunity to express and work through any fears and concerns you may have. We'll also provide an explanation about what's going to happen during your visit and work with parents, brothers and sisters and other family members who may be involved in your child's daily care.

As a part of our commitment to family-centered care, Child Life specialists work with your child's health care team to advocate for and ensure your child's and your family's needs are addressed in the most nurturing atmosphere possible.

The Child Life program at Cook Children's offers a variety of services, all designed to make your experience at Cook Children's the best it can be. Our services include educating, preparing and supporting your child through tests and procedures, as well as coping with any life challenges you and your child may face.

Our Child Life specialists and activity coordinators also provide meaningful play and recreational opportunities for patients and siblings visiting the hospital to promote growth, development and some much needed fun. Best of all, the services are available for free. Child Life services include, but aren't limited to:

  • Activities and toys for families to engage in while they are in their hospital room
  • Developmentally appropriate teaching about diagnosis, treatments and life changes
  • Opportunities to desensitize and explore real medical equipment through play (medical play)
  • Preparation for medical exams, procedures and surgeries
  • Assistance with coping strategies, distraction and/or support during stressful events
  • Support to siblings and other family members visiting a patient
  • Celebration of birthdays, milestones, holidays and essential life experiences
  • A visit to a child's school after life-altering injury or chronic illness to help classmates understand and make it easier for the patient when returning to classes
  • Developmental assessments and referrals to community resources
  • End-of-life support to patient and family as well as bereavement support for family members
  • Child Life Zone is a treatment-free fun zone where kids, teens and family members can go for games, art, music, reading and relaxing
  • CARPE (Creative Artist in Residence Programme) connects patients to the art of healing through creative expression
  • Provide information about hospital amenities