Alongside our scientific work, communicating with the wider world about the topics of preterm birth and brain injury has been one of our focuses in PREMSTEM. Growing Together – A Shared Journey from the NICU to Now is an illustrated story created by members of the consortium and the PCAB in collaboration with professional illustrators.
Sophia and Adam were born preterm. In this story, told through their parents’ eyes, we discover moments in their lives since they bonded in the Neonatal Intensive Care Unit, and learn about support networks based in the care of teachers and the guidance of medical experts.
Through the power of illustration, our aim has been to create a realistic story to help families and caregivers to understand how preterm birth may impact their lives. We hope it will help families to understand how life might look when a child is born too soon and serve as a tool for health professionals to facilitate discussions with caregivers.
In Growing Together we see that life can be complicated at times, both emotionally and logistically. We see that preterm-born children may sometimes need extra support. We see many challenges, and we also see hope. We see how important a support network can be – be it through the friendship of another family, the expertise and compassion of a medical professional, or the dedication and care of a teacher.
When a child is born too soon, there will be no one typical outcome or journey for this child and their family. In our story, we have tried to portray some of the emotions and steps that may happen, guided by insights from parents and medical professionals with lived experience of preterm birth.
However, we acknowledge that the diagnosis and treatment of neurological conditions, such as cerebral palsy and ADHD (attention deficit hyperactivity disorder), differs around the world. Among our authors, we had many discussions around these topics.
We invite you to read our story; we hope you find it insightful and encouraging. If your family has been affected by any of the topics of the story, our partners GFCNI and CPA have a wealth of information on their websites to support families of children born preterm or living with cerebral palsy. Remember, you are never alone on your journey.
Download Growing Together – A Shared Journey from the NICU to Now
