CHD RESOURCES
My CHD Sidekick.
My CHD Sidekick is a digital care journal for CHD families. It provides one secure place to organize, track, and share everything related to your child’s care.
My CHD Sidekick is completely free for CHD families, made possible by The Brett Boyer Foundation. Our community has enough to manage. Let us take one thing off your plate.
Learn more about My CHD Sidekick below or sign up now!
What families can store:
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MY CHD SIDEKICK
Everything in one place.
Right when you need it.
CHD families carry a heavy load, and not just medically. Notes, documents, appointment histories, medication lists, specialist contacts. It adds up fast. My CHD Sidekick was built to make that part easier.
My CHD Sidekick is a digital care journal designed specifically for patients and families navigating congenital heart disease. Instead of piecing information together from memory, scattered notes, and stacks of paperwork, you can keep everything in one secure, easy-to-access place.
Whether you're heading into an appointment, introducing your child to a new provider, preparing for school or travel, or just trying to stay on top of day-to-day care, My CHD Sidekick is ready when you are.
You don't need to do everything at once. Start with one thing: a medication, a document, a contact. That's enough to begin. It gets more useful over time, not more overwhelming.
ABOUT DOWN SYNDROME
DS FAQ.
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Down syndrome occurs when there is an extra full or partial copy of chromosome 21. This extra genetic material affects how a baby’s body and brain develop.
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In most cases, Down syndrome is not inherited. It typically occurs as a random event during the formation of the egg or sperm. However, in rare cases, a form of Down syndrome called translocation Down syndrome can be inherited from a parent who carries a rearranged chromosome 21.
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People with Down syndrome are more likely to experience certain health conditions, such as:
- Congenital heart defects
- Vision problems, like strabismus (crossed eyes) or cataracts
- Hearing loss
- Thyroid issues
- Sleep apnea -
Intellectual disability in individuals with Down syndrome can vary widely, ranging from mild to moderate to severe. However, many people with Down syndrome are able to attend school, hold jobs, and live independently, especially with the right support and education.
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Yes, people with Down syndrome are living longer than ever before. The average life expectancy has increased significantly due to medical advancements and improved healthcare, with many people with Down syndrome living into their 60s and beyond.
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Yes, Down syndrome can often be detected during pregnancy through screening tests (like a blood test and ultrasound) or diagnostic tests (like amniocentesis or chorionic villus sampling), which analyze the chromosomes.
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Providing early intervention services such as physical therapy, speech therapy, and educational support is critical. Creating an inclusive and supportive environment where people with Down syndrome are treated with respect and dignity is equally important. Additionally, fostering independence while offering guidance is key to helping them achieve their potential.
ABOUT DOWN SYNDROME
How we talk about DS.
Language plays a vital role in shaping perceptions and promoting inclusion. When talking about individuals with Down syndrome, it’s important to use respectful and person-first language. Here are some guidelines:
Always put the person before the diagnosis. For example, say “a person with Down syndrome” rather than “a Down syndrome person.” This emphasizes that individuals are people first, with Down syndrome being just one part of who they are
Avoid describing the condition as “Downs” or saying “Downs baby” or “He has Downs”
Rather than focusing on what people with Down syndrome cannot do, or their intellectual/physical differences, emphasize their abilities and strengths
Down syndrome does not need a cure. It is a syndrome - not a disease. People have Down syndrome - they do not suffer from it.
Instead of using “normal” when speaking about people without Down syndrome, use “typically developing” or “typical”
Always remember that Down syndrome is a condition, not a defining feature. The individual is more than their diagnosis. Focus on their personality, interests, and talents