A Mother’s Story – My Children’s Journey with Vision Problems
Prevent Blindness ASPECT program member Bridget Benard discusses her two children's vision problems, and the importance of early detection and treatment.
Why Vision Matters for Children with Special Needs
Did you know that children with autism spectrum disorder, neurodevelopmental conditions (such as ADHD, Down syndrome, and cognitive impairment), and systemic conditions (such as diabetes) are at higher risk of having a vision disorder? This webinar is the first in a series brought to you by the National Center for Children’s Vision and Eye Health at Prevent Blindness. We will Explore the important role of those working in early childhood education and care, medical care, and school nursing in ensuring the early identification and treatment of vision disorders and supporting the vision and overall health of children with special learning or health needs.
This video compiles footage from medical experts, early intervention specialists, parents, and other professionals sharing their experiences with ROP, with a focus on ROP care after children leave the NICU. This video highlights ROP care and treatment, early intervention programs, the importance of follow-up eye care, and the parent experience of caring for a child with ROP.
Representative Marc Veasey’s Statement for World Sight Day
Rep. Marc Veasey, TX-33, is co-chair of the Congressional Vision Caucus and a co-sponsor of the Early Detection of Vision Impairments for Children (EDVI) Act.
Retinopathy of Prematurity – Tracy and her Son Cooper
Tracy Pella highlights the successes of her 11-year-old son, Cooper with ROP and cortical visual impairment (CVI). She emphasizes the impact of a supportive team, and the use of specialized tools like magnifiers and enlarged print.
Retinopathy of Prematurity (ROP) Family Resources at Hand to Hold
Kelli Kelley highlights Hand to Hold’s comprehensive support services for NICU families, offering one-on-one peer mentoring, virtual support groups, educational materials, and resources accessible through their website, podcast, and app.
What are Some of the Challenges Parents Face in the NICU?
Tiffany Gladdis, PsyD addresses the emotional challenges NICU parents face, particularly grief and guilt. She emphasized the need for supporting families in releasing guilt and grieving the gap between their expectations and the reality of having a baby in the NICU.
ROP – What Kind of Support do Parents Need When Their Baby is in the NICU?
Tiffany Gladdis, PsyD emphasizes the need for NICU teams to have a dedicated support person who can validate parents’ emotional challenges, empower them to advocate for their child, and encourage clinicians to approach parental care with empathy and a trauma-informed perspective.
Retinopathy of Prematurity (ROP) – Advice for Parents
Nicole Pratt, MAT, BS and her son, Jordan, emphasize the importance of advocating for your child’s care through asking questions, sharing your personal story, and continuing to manage the impact of vision impairment into adulthood with glasses and other adjustments.
Retinopathy of Prematurity – Advice to Clinicians, Nurses and Social Workers
Kelli Kelley highlights the importance of early intervention support for NICU graduate parents, emphasizing the role of peer mentors, family support specialists, and mental health resources in helping parents adjust, bond with their baby, and advocate for their child post-discharge.
Retinopathy of Prematurity (ROP) – What Do you Remember from When Your Child Was First Diagnosed?
Tracy Pella reflects on the overwhelming moment her micro preemie was diagnoses with ROP, highlighting the uncertainty, emotional turmoil, and need for clear guidance while navigating the complexities of the condition and its treatment.
Retinopathy of Prematurity (ROP) – Parents Are Part of the Team!
Olachi, Mezu-Ndubuisi, MD, OD explains the importance of parents being active members of their baby’s NICU care team and advocating for their child while building trust with healthcare providers. She stresses the significance of self-care and hope amidst the emotional challenges of the NICU experience.
Retinopathy of Prematurity (ROP) – What is the Impact of Anti-VEGF Treatment?
Dr. Paul Chan explains uncertainties surrounding long-term outcomes of anti-VEGF therapy, and recent studies to support its effectiveness in helping prevent blindness in some ROP patients.
The Most Challenging Part of My Child’s Retinopathy of Prematurity (ROP) Diagnosis and What Helped.
Nicole Pratt speaks to the challenges faced as a parent navigating the uncertainty of her child’s potential vision impairment. She emphasizes the importance of early vision intervention and actively engaging with a vision teacher to seek support and ask questions.
How Parents Can Prepare for the Retinopathy of Prematurity (ROP) Exam, diagnosis, and treatment
Claudia Perez, BSN, RN, COA emphasizes that exam diagnosis and treatment options are interconnected and encourages parents to thoroughly review the provided information and continue asking questions until they feel fully informed and confident.
Retinopathy of Prematurity – what can parents do after a child’s ROP diagnosis?
Dr. Paul Chan details the importance of screening for ROP and how parents can collaborate with the treatment team to ensure their child is getting the care they need.
This video compiles footage from medical experts, early intervention specialists, parents, and other professionals sharing their experiences with Retinopathy of Prematurity (ROP), with a focus on ROP care after children leave the NICU. This video highlights ROP care and treatment, early intervention programs, the importance of follow-up eye care, and the parent experience of caring for a child with ROP.
Dr. Paul Chan explains the key aspects of ROP by highlighting essential strategies and early detection measures, with a focus on how timely intervention can protect young eyes from irreversible damage. He emphasizes practical steps for healthcare professionals and parents to caring for children with ROP.