The first days and weeks after a baby is born can be overwhelming for any family. For families of babies with Prader-Willi syndrome (PWS), those early days may come with additional challenges - including feeding difficulties, an unexpected diagnosis, time in the NICU, and learning how to care for a baby with needs that may be unfamiliar to their medical team.
A new survey in the Global PWS Registry is giving parents and caregivers an opportunity to share what that experience was like.
The Neonatal Caregiver Survey asks families about the care their child received during the first year of life, from their newborn hospitalization through the transition home and early infancy.
What Does the Survey Ask About?
The survey focuses on your family's experience navigating newborn and infant care, including where your child received care, how you learned about your child's PWS diagnosis, and the information and support you received following diagnosis.
It asks about how doctors and nurses communicated with you during your child's hospital or NICU stay, what you were taught about feeding your baby, and how prepared you felt to care for your baby when you left the hospital.
The survey also explores the care and support your child received after coming home and how caring for your child during this time affected you.
These experiences can vary significantly from family to family. By collecting this information across the PWS community, researchers can better understand where families are receiving the support they need, and where there may be opportunities to improve care.
Who Can Participate?
You may be eligible to complete the Neonatal Caregiver Survey if:
- Your child has PWS
- Your child is 5 years old or younger
- Your child received newborn or infant care in North America
You don't need to have had a specific type of experience to participate. Whether your child's newborn care felt supportive, confusing, overwhelming, or somewhere in between, your experience is valuable.
Why Does Your Experience Matter?
For many parents, the newborn period is when they first begin learning what PWS means for their child. The information they receive, the way healthcare providers communicate with them, and how prepared they feel when they leave the hospital can have a lasting impact.
Your responses can help researchers and healthcare professionals identify opportunities to improve hospital and NICU care for babies with PWS, strengthen communication between medical teams and families, improve feeding education and support, help families feel more prepared when their baby comes home, and identify areas where additional resources or support may be needed.
By sharing what happened during your child's first year, you can help make the experience better for families who come next.
Share Your Experience Through the Global PWS Registry
The Global PWS Registry is designed to help researchers better understand the experiences of people living with PWS across the lifespan. Every survey completed adds another piece to the larger picture of what life with PWS looks like.
If you are eligible, we encourage you to log into the Global PWS Registry and complete the Neonatal Caregiver Survey.
Your experience matters. Your voice can help shape better care for babies with PWS and the families who love them.
