By Sue Ann Barton, Principal
Jenna Gensic, mother to 10-year-old Mikan, stood in front of us at the podium alongside her son, who was drawing at the table beside her. She shared with us her heart-wrenching story of an unexpected membrane rupture that led to Mikan’s premature delivery at 28 weeks. He spent the following six months in the Neonatal Intensive care Unit (NICU). She talked about the surreal experience of seeing her baby with all the tubes, wires and machinery. From the start of their hospital stay, nurses involved her and her husband in Mikan’s care to calm their anxieties and help them cope with each day and for the road ahead.
There were several factors that helped them acclimate and prepare for their new role as parents of a premature infant during their time in the NICU: the inclusive culture of the staff, camaraderie with other parents experiencing the same thing, and a sense of privacy while still feeling supported as an expert in the care team.
This international community of NICU experts gathers each year at the Gravens Conference in Sand Key, Florida to share research and experience in caring for pre-mature and high-risk infants. The goal is to improve the long-term outcomes for these babies. Jenna’s story, presented alongside members of her care team from Beacon Children’s Hospital, set the tone for conference: a focus on the importance of integration of family into the NICU environment and the physical accommodations that foster parental involvement.
The science shows that there is a lot happening in babies’ brains during their first months of life. The environment influences their brain development when they are spending this critical time in the NICU. As the research continues to advance, we are beginning to appreciate how influential this environment really is – not just in terms of design and function, but also the interactions and connections that a physical space can facilitate and reinforce. The following are five key take-aways from this year’s conference:
- The Single-Family Room (SFR) supports increased parental involvement and decreased length of stay. In the NICU, babies are exposed to an unnatural environment at a critical time in their development. The Single-Family Room (SFR) is a model where parents can stay in a private NICU room with their baby. It supports the presence of mother and father in the NICU to give them control over their environment. A recent study in Stockholm on the SFR shows this model to reduce length of stay and improve skin-to-skin time with parents. The SFR also improves sleep, short-term neuro development, breastfeeding, and bonding. Additionally, the environment benefits from lower exposure to sound levels and more parental presence with the child.
- Improved health and parental connection through Kangaroo Care. Skin-to-skin care, also referred to as “Kangaroo Care,” strengthens parental bonding. This type of care extends the nurturing environment of the womb through physical skin-to-skin contact with the baby. Notably, science shows that probiotic organisms are passed between the mother and baby during skin-to-skin time and breastfeeding.
- Stronger neurodevelopment from a calmer environment. A study conducted by neonatologists in France showed active involvement of parents in the SFR improved the neuro development of high-risk infants at 18 months of age. They noted the importance of controlling the acoustical environment to reduce exposure to deleterious sounds like alarms. The increased exposure to human, particularly maternal, voice in a quiet environment benefits the infant. The neonatologists found that babies recognize and respond to their mothers’ voice.
- Increased parental presence is improving outcomes. Beacon Children’s Hospital opened their new NICU in 2017 with a combination of SFR’s and couplet care rooms. Robert White, the director of the Regional Newborn Program, reported a number of key findings: an increase in parental presence and participation, skin-to-skin time increased from 0.7 to 2.3 hours per day, and families’ length of stay was reduced by two days or approximately eight percent. As noted by Dr. White, “there is no scientific basis for separating mothers and babies—and plenty of evidence that it can be harmful. Implement ‘rooming in’ and couplet care whenever possible for improved outcomes for newborns and their families.”
- Future of NICU emphasizes parental presence and participation. The SFR provides a neuroprotective environment, but parents are the active ingredient. The NICU of the future will include Single Family Rooms, couplet care rooms, multi-purpose rooms, and parents serving as a central role in their baby’s care.
The fragility and unpredictability of life for NICU babies cannot be over appreciated. The countless stories of premature babies and their families are only the beginning to better understanding the impact of this chapter in their life’s story. Life after the NICU undoubtably has its challenges and its rewards.
In Jenna’s story, the mother shared how her son’s challenges and triumphs have evolved throughout the 10 years since their NICU stay. From needing glasses at age one to requiring multiple surgeries and diagnoses of ataxic bilateral cerebral palsy and autism; the road has not been an easy one. Yet, Mikan’s brilliant successes triumph over these challenges. He could sign and spell by age two as well as read independently at two and a half. At three-and-half years old, he could freehand draw the United States map with proper capital identification and city placement. He even won his school’s Geography Bee in fourth grade. Mikan has faced significant adversities, but he and his family are resilient. They are living a full life and he enjoys being an older brother to his three siblings.
Stories like this help us to look to the future for NICU babies and their families, and for NICU care overall. It’s reassuring and exciting to know we can improve the care experience and outcomes by designing a better healing environment. The research shows us that single family rooms are a critical part of the story.
Sue Ann Barton is a Principal in the Portland office with 37 years of professional experience in healthcare design. Her portfolio includes hospital campus master plans, children’s hospitals, adult acute care hospitals, medical clinics, and other healthcare-related projects. Sue Ann brings a national perspective on healthcare issues and trends, with an emphasis on translating building programs into the most appropriate environments for patients, families, and staff