Parents & Family

Parents and families will benefit from resources which includes: guides & guidelines, videos & podcasts, recognizing strokes in children, caregiving, coping, books for parents, and books for children.

Guides & Guidelines

Improving Pediatric Stroke Diagnosis: Filling the Gaps
Summary of the American Heart Association’s scientific statement, Neurology Advisor, 2019

Pediatric Stroke Patient and Family Guide, 2015
Produced by the Departments of Neurology and Neurosurgery at the UNC Medical Center, IAPS, and others, this booklet provides basic information for patients and caregivers on pediatric stroke. This book was funded through a grant from the NC Stroke Care Collaborative.

Pediatric Stroke Brochure, 2015
Produced by the Departments of Neurology and Neurosurgery at the UNC Medical Center, IAPS , and others. This brochure highlights the signs and symptoms of pediatric and childhood stroke, along with steps to take for both types. Paid for by a grant from the NC Stroke Care Collaborative

A Family Guide to Pediatric Stroke, 2011
This guide was published through Canadian Stroke Best Practices/Heart and Stroke Foundation of Canada and is designed to provide basic information about stroke and stroke care to families of children who have had a stroke.

Childhood Stroke Resources, 2018
From The Stroke Association in the UK, this website includes: Childhood Stroke Information, an expansive Toolkit Information Guide, and Resources to support young people, families and professionals. Applicable for other countries.

2017 Stroke Report, 2017
The Canadian Heart & Stroke 2017 Stroke Report looks at the stroke recovery journey across the ages, highlighting common challenges and issues that occur at specific life stages: babies and children, younger adults and older adults. The childhood stroke section begins on page 6.

Canadian Stroke Best Practices, specific to pediatric stroke, 2015
Canadian Stroke Best Practices provides the “Best Practice Guideline” development and implementation. They aim to offer quality improvement of stroke care.

Patient Education Repository from the World Stroke Organization, 2017
This patient education resource from the World Stroke Organization is a downloadable spreadsheet covering all ages of stroke, with specific listings for pediatric stroke. Each list is searchable by different category for your convenience.

Videos & Podcasts

Stroke in Children Podcast, 2019
Dr. Heather Fullerton, a pediatric vascular neurologist at UCSF, discusses stroke in children, the causes, and the generally optimistic recovery path with Bill Monroe on StrokeCast.

A Stroke Can Happen at Any Age video series, 2014
The International Alliance for Pediatric Stroke, in partnership with the American Heart Association/American Stroke Association produced these videos to help raise awareness that a stroke can happen to infants, children and even before birth. Appropriate for parents groups and medical conferences.

In Our Baby’s Illness, 2013
In this TED Talk, Roberto D’Angelo and Francesca Fedeli talk about their son Mario’s perinatal stroke and mirror neuron rehabilitation during a TEDGlobal talk in 2013.

Recognizing Strokes in Children

Stroke: not just an adult’s condition
Overview of signs, symptoms, risk factors, treatment and delay in diagnosis from Medical News Today, 2015

Common infections linked to stroke in children; Vaccines may reduce risk
From the American Stroke Association’s International Stroke Conference, 2014

This World Stroke Day, Know That Kids and Teens Can Be Stricken, Too — Like Vandna
Written by AHA CEO Nancy Brown for the Huffington Post, 2014

Caregiving

Pediatric Exams: Stroke in Children, 2015
In this video, Dr. Rebecca Ichord of Children’s Hospital of Philadelphia, explains the signs and symptoms of pediatric stroke and demonstrates an exam.

Coping

Parents experience post-traumatic stress disorder after child’s stroke
Research study from Boston’s Children’s hospital. Parents of children who had suffered a stroke showed signs of PTSD while children showed signs of anxiety. Published in 2015

Parent and family impact of raising a child with perinatal stroke
Although most mothers of children with perinatal stroke adapt well, mothers of children with moderate/severe conditions appear to be at higher risk for psychological concerns. Published in BMC, 2014

Depression in Parents of Children With Developmental Disabilities: What Do We Know and What Can We Do?
Helping parents feel more capable and effective in caring for their child with special needs may reduce the risk of depression. From Children’s Hospital of Philadelphia, 2018.

Books for Parents

The Hemiplegia Handbook, 2012
This book, published through HemiHelp in the U.K., is a detailed overview of hemiplegia covering a wide range of aspects from its causes to information on how to support a child affected by hemiplegia. Practically oriented, the Hemiplegia Handbook aims to be a useful guide for both parents and professionals. It costs £5.00 to ship outside of the UK in Europe and £10.00 to ship to countries outside of Europe. For international purchases please contact the office before making your order 0845 120 3713 or email kate@hemihelp.org.uk.

The Little Dark Spot: How I Came to Terms with My Baby’s Stroke, 2015
This book tells the story of how a mother drew inspiration from her
childhood heroes and applied seemingly unrelated life experiences, helped her daughter overcome the effects of a childhood stroke.

Lotta e sorridi (Smile and Keep up the Fight), 2015
A story about love and science by Francesca Fedeli. The moving story of two parents faced with what parents fear the most — their child’s illness — and turning it into an amazing opportunity. The book is written in Italian. The English excerpt can be found here.

Books for Children

Daniel’s New Friend, 2015
A new generation of children love Daniel Tiger’s Neighborhood, inspired by the classic series Mister Rogers’ Neighborhood. This delightful story is perfect for helping little ones understand that despite small differences, anyone can become a new friend. This is also available as a video, Daniel’s New Friend, episode #133 of the Daniel Tiger’s Neighborhood.

I See You, Little Naomi, 2014
Meet Naomi and get to know about her unique life because of a boo-boo that others can’t see. A survivor of pediatric stroke, her story will introduce children to the world of special needs and that it’s okay to be curious about others who may look or act differently.

Mimi Learns to Walk, 2014
The “Mimi” Books are based on a mother’s own experience helping her daughter. They feature a young girl who is just like everyone else except that as a baby, she suffered a stroke. Also available in French.