ConradSmiles is a not for profit supporting research to improve the understanding and treatment of anoxic brain injury.
Drowning is the leading cause of injury death in children 1-4. As first response and intensive care procedures advance, the number of children who survive will inevitably increase.
Non fatal drowning results in Anoxic Brain Injury,diffuse brain injury due to lack of oxygen. The range of injury varies significantly from child to child,with islands of preserved function distributed more or less randomly.
Unless the child walks away unharmed,families are not given much hope or guidance. If the brain injury is severe (as in Conrad’s case),families are encouraged to institutionalize their child or even worse to withdraw care. The prevailing thought is that recovery is too difficult if not impossible. The child’s life is saved only to give him or her a death sentence.
Families that aim to defy the odds are left to their own to devises to manage the care of their child. We are provided with very limited guidance as to how to promote brain function recovery. Most encouragement comes in the form of “Hope for the Best and Prepare for the Worst”.
But we have demonstrated that recovery is possible. We have children who have learned to move on their own,smile and interact with family and friends.
Doctors are starting to acknowledge that varying degrees of recovery are possible. However, Anoxic Brain Injury is an understudied condition.
Our mission is to drive the medical community to provide comprehensive information with a focus on treatments and interventions that promote a healthy and productive life. We are currently partnering with another not for profit called Hope4JD to develop a non fatal drowning registry and network. Our goal is to register ALL non fatal drownings to help quantify the impact of the condition and give power to our voice.
We are also supporting the first research project to assess anoxic brain injury in pediatric non fatal drowning cases. The study is lead by Dr. Peter Fox, founder and head of the UT Health Science Center’s Research Imaging Institute in San Antonio, Texas and involves a special type of MRI called resting state functional MRI. The research is looking to find patterns and understand how the brain is “working” compared to a child without injury. More information on the research is provided below.
We want all children who survive a non fatal drowning accident to achieve their maximum potential – no limits!
Current Research In Progress
Dr. Peter Fox, founder and head of the UT Health Science Center’s Research Imaging Institute in San Antonio, Texas is leading the FIRST research project to address brain injury in child near drowning cases. He aims to change the current protocol by giving families information on the functional status of their child’s brain. This information can be used to target therapy by focusing on the areas of the brain with the most potential to recover.
Utilizing Resting State Functional Imaging, his team is analyzing the brain activity and patterns of connections to assess neural system integrity. The analysis will provide information on which systems are intact (e.g. visual, attention, language, auditory, tactile) and identify regions of brain that have the best potential to regain function. The information will assist caregivers in management and treatment decisions and provide a more targeted approach to therapy that will enhance patient outcomes. (see below for more information)
Initial analysis is extremely promising! Networks related to movement are compromised as we expected. If you have interacted with Conrad, you know that he has very limited movement. However other major networks were relatively in tact such as vision, hearing, cognition and language. This is not a surprise to you who have interacted with Conrad either. However the fact that these children are “in there” has never been communicated to the medical community. Dr. Fox plans to publish his findings in May. 2015!
About Resting State Functional MRI:
Cat Scans and MRI are the most common assessment tools used for Anoxic Brain Injury. They provide information on the brain structure and typically show a gradual loss of grey matter in cortex and subcortical nuclei as neurons and cell bodies die. However, such images do not provide information for clinicians to predict brain function.
Functional MRI (fMRI) measures brain activity. A significant limitation of traditional fMRI is the requirement that the subject be able it perform specific tasks when cued.
Resting State Functional MRI provides a “Task free” assessment based on Intrinsic Connectivity Networks (ICNs):
- ICNs mirror the networks used during volitional task performance.
- Discrete ICNs support discrete function.
- ICNs persist during natural sleep and sedation.
Networks include: Visual, auditory, somatosensory, linguistic, attention, working memory/executive functioning and default mode network (DMN) – self awareness, interoception (feelings from our bodies that relate our state of well-being, our energy and stress levels, our mood and disposition) and introspection (self-examination of one’s conscious thoughts and feelings)
About Anoxic Brain Injury (ABI):
Drowning is the leading cause of injury death in children 1-4. Despite aggressive prevention, incidence remains high. As first response and intensive care procedures advance, incidence of non-fatal/near drowning will inevitably increase because more children will survive their injuries.
Non Fatal/ near drowning results in Anoxic Brain Injury, specifically Hypoxic-ischemic encephalopathy, diffuse brain injury due to lack of oxygen. The range of injury varies significantly from person to person.
About Dr Fox:
Peter T. Fox, M.D, is the founder of the UT Health Science Center’s Research Imaging Center (RIC). Dr. Fox earned his medical degree from Georgetown University School of Medicine, interned at the Duke University School of Medicine and completed his residency and fellowship at Washington University in St. Louis. He was a senior staff scientist at Johns Hopkins University’s Mind/Brain Institute before joining the Health Science Center in 1991 to create the RIC. He has appointments in radiology, neurology, psychiatry and physiology.
Thank you so much for your interest in the research for anoxic brain injury that will benefit Conrad and other near drowning victims.
How can you help: Please contact us if you know of any other foundations that may be interested in funding this and/or future research. We have also set up an umbrella foundation under the San Antonio Area Foundation.
Contributions are tax deductible.
Follow this link to donate now
San Antonio Area Foundation will send you a receipt for tax purposes.
Choose ConradSmiles fund in the designation