Tag: Spina Bifida

Including Cerebral Palsy, Cleft Lip and Cleft Palate, Congenital Heart Defects, Fetal Alcohol Spectrum Disorders, Hearing Loss and Deafness, Muscular Dystrophy, Spina Bifida, and Vision Loss

According to the CDC:

Every 4 ½ minutes, a baby is born with a birth defect in the United States. That means nearly 120,000 babies are affected by birth defects each year.

Birth defects are structural changes present at birth that can affect almost any part or parts of the body (e.g., heart, brain, foot). They may affect how the body looks, works, or both. Birth defects can vary from mild to severe. The well-being of each child affected with a birth defect depends mostly on which organ or body part is involved and how much it is affected. Depending on the severity of the defect and what body part is affected, the expected lifespan of a person with a birth defect may or may not be affected.

Websites

Centers for Disease Control: Birth Defects
Diagnosis of Birth Defects

Cerebral Palsy

According to the National Institute of Neurological Disorders and Stroke:

The term cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement, muscle coordination, and balance. CP affects the part of the brain that controls muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. Other neurological symptoms that commonly occur in individuals with CP include seizures, hearing loss and impaired vision, bladder and bowel control issues, and pain and abnormal sensations. A small number of children have CP as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse. The disorder isn’t progressive, meaning that the brain damage typically doesn’t get worse over time. Risk factors associated with CP do not cause the disorder but can increase a child’s chance of being born with the disorder.  CP is not hereditary.

Downloadable Resources

Cerebral Palsy: An Information Guide for Parents
Cerebral Palsy: Critical Elements of Care
Cerebral Palsy: Hope Through Research
Cerebral Palsy in Childhood
Introduction to Cerebral Palsy

Articles

Grooming and Self Care Tips for the Cerebral Palsy Community
Inspiring Pease brothers ready to take on Ironman World Championship
Living with Cerebral Palsy: The Gandee Family Story
Technology and the IEP

Websites

American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)
CDC: Cerebral Palsy
Cerebral Palsy Foundation
Cerebral Palsy Guidance
Cerebral Palsy Research Registry (CPRR)
United Cerebral Palsy (UCP)

Cleft Lip and Cleft Palate

The Mayo Clinic states:

Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don’t close completely.

Cleft lip and cleft palate are among the most common birth defects. They most commonly occur as isolated birth defects but are also associated with many inherited genetic conditions or syndromes.

Downloadable Resources

Children Born with Cleft Lip & Palate: A Guide for Parents and Carers
Children Born with Cleft Lip and Palate: Alveolar Bone Grafting (ABG)
Children Born with Cleft Lip & Palate: The School Years
Cleft Lip and Palate: Critical Elements of Care
The Impact of Cleft Palate: Speech
The Management of Cleft Lip & Palate

Articles

Real Stories: Living with Cleft Lip and Palate

Websites

CDC: Facts about Cleft Lip and Cleft Palate
Cleft Lip & Palate Association (CLAPA)

Congenital Heart Defects

According to the NIH:

Congenital heart defects, or diseases, are problems with the heart’s structure that are present at birth. They may change the normal flow of blood through the heart. Congenital heart defects are the most common type of birth defect.

There are many types of congenital heart defects. The most common defects involve the inside walls of the heart, the valves of the heart, or the large blood vessels that carry blood to and from the heart. Some defects require no treatment, but some require treatment soon after birth. Because diagnosis and treatment of congenital heart defects has improved, more babies are surviving and now many adults are living with congenital heart defects.

Downloadable Resources

Five Things you Need to Know About Congenital Heart Defects
Mended Little Heart Guide
Screening for Critical Congenital Heart Defects
Therapeutic Cardiac Catheterizations for Children with Congenital Heart Disease
When Your Child Has a Heart Defect: Planning Ahead for Lifelong Heart Health (Spanish Version here)

Articles

Children with Heart Conditions Have Special Healthcare Needs
Congenital Heart Defects Surgery
Feeding Tips For Your Baby with CHD
Real Stories: Living with Heart Defects
Special Needs For Children with a Congenital Heart Defect

Websites

Adult Congenital Heart Association
American Heart Association
Congenital Heart Defects in Children
National Heart, Lung, and Blood Institute
March of Dimes: Congenital Heart Defects and Critical CHDs
Transplant Families

Fetal Alcohol Spectrum Disorders

According to the Centers of Disease Control:

Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person whose mother drank alcohol during pregnancy. These effects can include physical problems and problems with behavior and learning. Often, a person with an FASD has a mix of these problems.

Downloadable Resources

Fetal Alcohol Exposure
Fetal Alcohol Spectrum Disorders (Spanish Version available here)
Flow Diagram for Medical Home Evaluation of Fetal Alcohol Spectrum Disorders
Parenting Children Affected by Fetal Alcohol Syndrome
So You Have Been Diagnosed with FASD: Now What?
Strategies Parents Find Helpful In Raising Their Children Living With FASD
The Basics of Fetal Alcohol Spectrum Disorders: Information for Families

Articles

Fetal Alcohol Syndrome Is Quite Common — And Most Children Aren’t Diagnosed
Living with FASD: Brenna
My Mother, the Alcoholic: Living with Foetal Alcohol Syndrome

Websites

CDC: Fetal Alcohol Spectrum Disorders (FASDs)
Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders (FASD) Toolkit
National Organization on Fetal Alcohol Syndrome (NOFAS)

Hearing Loss and Deafness

According to the World Health Organization:

A person who is not able to hear as well as someone with normal hearing – hearing thresholds of 25 dB or better in both ears – is said to have hearing loss. Hearing loss may be mild, moderate, severe, or profound. It can affect one ear or both ears, and leads to difficulty in hearing conversational speech or loud sounds.

‘Hard of hearing’ refers to people with hearing loss ranging from mild to severe. People who are hard of hearing usually communicate through spoken language and can benefit from hearing aids, cochlear implants, and other assistive devices as well as captioning. People with more significant hearing losses may benefit from cochlear implants.

‘Deaf’ people mostly have profound hearing loss, which implies very little or no hearing. They often use sign language for communication.

Downloadable Resources

Assistive Devices for People with Hearing, Voice, Speech, or Language Disorders
Decision Guide to Communication Choices For Parents (Spanish Version available here)
Guía para Familias de Niños con Pérdida Auditiva
Learning about Hearing Loss – A Roadmap for Families (Spanish) (Russian) (Chinese)
Making a Plan for Your Child: IFSP Considerations for Children who are Deaf and Hard of Hearing
Questions You May Want to Ask Your Child’s Audiologist
Questions You May Want to Ask Your Child’s Speech Language Pathologist
Resource Notebook for Families of Children Who are Deaf or Hard of Hearing
(Spanish) (Chinese) (Russian) (Vietnamese) (Somali)
The Deaf Community: An Introduction (Spanish)

Articles

IDEA: The Foundation of Special Education
One Family’s Journey: Amelia’s Story
Section 504: A Plan for Equity, Access and Accommodations
What is Deaf Culture?

Websites

American Society for Deaf Children
ASL Sign Language Dictionary
CDC: Hearing Loss in Children
National Association of the Deaf (NAD)
National Center for Hearing Assessment and Management (NCHAM)
Sign It: ASL Made Easy
World Federation of the Deaf (WFD)

Washington State Resources

Abused Deaf Women’s Advocacy Services (ADWAS)
Hearing, Speech & Deaf Center
Northwest Rainbow Alliance of the Deaf (NWRAD)
Puget Sound Association of the Deaf
Washington Hands & Voices
Washington School for the Deaf
Washington State Association of the Deaf
Washington State Office of the Deaf and Hard of Hearing

Muscular Dystrophy

According to the CDC:

Muscular dystrophies are a group of genetic disorders that result in muscle weakness over time. Each type of muscular dystrophy is different from the others. It is important to get help as early as possible. Muscular dystrophy has no cure, but acting early may help an individual with muscular dystrophy get the services and treatments he or she needs to lead a full life.

Downloadable Resources

Guide For Caregivers
Hope Through Research: Muscular Dystrophy
Learning to Live with Neuromuscular Disease: A Message for Parents
The Diagnosis and Management of Duchenne Muscular Dystrophy Guide for Families

Websites

Cure CMD
Muscular Dystrophy Association (MDA)
Muscular Dystrophy Information Page
Parent Project Muscular Dystrophy

Spina Bifida

From the Mayo Clinic:

Spina bifida is a birth defect that occurs when the spine and spinal cord don’t form properly. It’s a type of neural tube defect. The neural tube is the structure in a developing embryo that eventually becomes the baby’s brain, spinal cord and the tissues that enclose them.

Normally, the neural tube forms early in pregnancy and it closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube doesn’t close or develop properly, causing defects in the spinal cord and in the bones of the spine.

Spina bifida can range from mild to severe, depending on the type of defect, size, location and complications. When necessary, early treatment for spina bifida involves surgery — although such treatment doesn’t always completely resolve the problem.

Downloadable Resources

An Expectant Parent’s Guide to Spina Bifida
Guidelines for the Care of People with Spina Bifida
Hydrocephalus and Shunts
Spina Bifida and the Spine
Spina Bifida Occulta
Urinary Tract Infections in Young Children with Spina Bifida
What is Spina Bifida?

Articles

Living with Spina Bifida – Nikia’s Story
Things I Wish I Knew on Folic Acid

Websites

CDC: Spina Bifida
NIH Spina Bifida Information Page
Spina Bifida Association

Vision Loss

The World Health Organization:

Classifies vision impairment into two groups, distance and near presenting vision impairment. A person’s experience of vision impairment varies depending upon many different factors. This includes for example, the availability of prevention and treatment interventions, access to vision rehabilitation (including assistive products such as glasses or white canes), and whether the person experiences problems with inaccessible buildings, transport and information.

Among children, the causes of vision impairment vary considerably across countries. For example, in low-income countries congenital cataract is a leading cause, whereas in high income countries it is more likely to be retinopathy of prematurity.

Downloadable Resources

Facts About Vision Loss
Going to College: Tips for Students with Visual Impairments
Living With Low Vision: What You Should Know
Visual Impairments, Including Blindness

Articles

Growing Up with Low Vision: An Interview with Dr. Z

Websites

American Council of the Blind
American Foundation for the Blind (AFB)
International Agency for the Prevention of Blindness (IAPB)
National Federation of the Blind (NFB)
Teaching Students with Visual Impairments
World Blind Union (WBU)

Washington State Resources

Edith Bishel Center for the Blind and Visually Impaired
Lighthouse for the Blind
Washington Council of the Blind (WCB)
Washington State Department of Services for the Blind
Washington State School for the Blind