What is Complex Care?

Have you heard the term Complex Care and wondered if your child has complex needs?

Me too. There are so many terms used to describe children with disabilities and medical complications, it can be confusing.

When my daughter Elise was born, I realized how little I knew about the world of complex needs.

At Elise’s first well visit we were surprised as her pediatrician pointed out some anomalies on her. When the doctor explained “I don’t think this is Down Syndrome.” we were in complete shock. But in all honesty, I really didn’t even know what that meant. I hadn’t grown up around other kids or families who had disabilities or complex needs.

When Elise was finally diagnosed with her specific chromosome difference, we were told that there were only 6 ever reported cases. I started to research syndromes close to hers and all the possible outcomes of those specific trisomy’s. I also joined support groups that were related to those genetic conditions.

As time went on I realized that most all of her diagnoses and symptoms were very similar to many other more common conditions, such as Down Syndrome, Autism, Cerebral Palsy and Brain Injury. Just because she wasn’t diagnosed with those specific disabilities, didn’t mean we moms weren’t all dealing with the same things.

Our Similarities Are Greater Than Our Differences

Most kids with complex care needs are on medications, require medical equipment, need supports such as nursing, PCA’s and caretakers. We all have frequent appointments, therapies, hospital stays, insurance challenges and school hassles. We can also all deal with extreme exhaustion from doing ALL THE THINGS it requires to keep our complex child healthy and progressing. This is compounded by the sheer fact that not many of our friends or family understand what we are going through, which can often lead to more emotional and physical struggles. Complex care is all of that and so much more.

Children who require complex care or children with medical complexities are often viewed as having life-limiting complex chronic conditions that affect the function of multiple systems in their bodies. Our children often rely on multiple medications, medical equipment and extremely supportive families in order to optimize their health.

If you have a child with brain injury, cerebral palsy, cystic fibrosis, a cardiovascular or genetic condition or any other chronic medical complexities, your child requires complex care. And if your child has complex needs, I feel you and I want to help make your life easier, lighter and happier, while providing the best life for your child.

My Child has Complex Care Needs? What Do I do?

First, I would like to welcome you to Navy Anchor, where we understand the challenges and the strength it takes to raise a child with complex medical needs.

If you’re looking for excellent templates, systems, resources and support- we got you and you are in the right place!

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