Lwam Rafel gave birth to her daughter, Sloane, in November 2019 at NYU Langone.
Sloane was born extremely premature at just 25 weeks gestation following a complicated and unexpectedly high-risk pregnancy that required several hospital stays, multiple blood transfusions, and finally, a sudden, emergent delivery.
Baby Sloane spent five months in the NICU at Hassenfeld Children’s Hospital at NYU Langone, mainly due to her under-developed lungs. She was intubated for three months to help her breath. Lwam and her husband, Jesse, brought Sloane home in April 2020 at the height of the COVID-19 pandemic.
Welcoming the newest member of the family should be a joyous time, but when a serious medical crisis accompanies the birth, the notion of what is “supposed to” transpire is anything but normal.
Lwam credits the compassionate NICU team and Sala Institute for Child and Family Centered Care with helping her family throughout this time. The Sala multidisciplinary team included social workers, child life specialists, and an early childhood psychologist. Their expertise in conjunction with the medical team comprised a holistic approach to support the Rafel family. “Throughout our NICU stay, from social workers to Child Life to the psychologists, we have picked up tools and skills that we also give to our children and use beyond the hospital walls around dealing with challenges including resilience, kindness, and grace,” Lwam explains.
Social workers from Sala facilitate communication between families and the medical team, ensuring mutual understanding of medical terminology and the family’s unique needs. Erin Collins, director of Pediatric Social Work, says, “Sala’s impact ensures we provide needed resources and support for families. Social workers meet the family where they are that day and in that moment so we can provide a range of support based on their specific needs.”
They also connect families to resources that support their transition to home or the next level of care within the medical system, all with the shared goal of alleviating stressors so they can focus on the care for their child.
During Sloane’s stay in the NICU, Erin Villani, a pediatric social worker, noted that the Rafels were true partners, always asking questions and learning as much as they could about Sloane’s medical conditions.
Lwam knew that skin-to-skin contact, or Kangaroo Care, has proven successful in patient outcomes, including stabilizing the baby’s heart rate and regulating breathing patterns. “Lwam advocated for being able to hold her daughter,” says Villani. “We came together as a team to assess how we could make this happen.”
The team taught the Rafels how to work around the equipment so they could physically bond with Sloane. “Lwam was always respectful of our team and a wonderful partner in care. This new approach has enabled other parents to use Kangaroo Care with their infants in the NICU sooner than they might have in the past,” says Villani.
Marking Milestones in Little Sister’s Progress
For Lwam and Jesse, explaining to big brother Asher, then two years old, that his little sister wasn’t coming home immediately after she was born was daunting. Stacey Schneider, a child life specialist, recommended using a sticker chart so Asher could mark milestones in Sloane’s progress. “Child Life helped me find and create joy and connection when I felt like I was at a constant loss for it,” says Lwam.
They also did hand printing projects to compare Asher’s size to his sister’s and provided a picture frame that he decorated so he could share her photo at school and keep it near his bed. “This gives the sibling some ‘proof’ that the baby is part of their family and ‘belongs’ to them as well,” says Schneider.
Giving Back to Other Patients and Families
As a result of her family’s experiences, Lwam joined the Sala Family Advisory Council. The council meets monthly and is comprised of 35 family members of patients at Hassenfeld Children’s Hospital. Alongside the Sala Youth Advisory Council, the group provides input on new programming and initiatives for current and future children and families at the hospital.
Liza Cooper, LMSW, is manager of Family and Youth Partnerships and Resources at Sala Institute and works directly with the council. “Lwam is a changemaker. There are some people who can tell a story about a challenging time in their life that makes you think; when Lwam tells her story, it changes the way you see things,” says Cooper.
The Kangaroo Care initiative and the support from Social Work, Child Life and Early Childhood Psychology that families receive are all possible through Sala Institute, which is supported by generous donors.
As a parent of a child in the NICU and a Sala Family Advisory Council member, Lwam is grateful to help other families gain confidence and empowerment in their roles as parents and healthcare advocates. She remarks, “Through what we went through, I know I’ve become a better parent. I can speak up for my kids, saying what will work for our family and what won’t, and I can partner better with the medical team to make sure we are working together each and every time to get our kids the best possible care.”