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Challenge: Kids with Special Needs

Open Letter to the American Academy of Pediatrics

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Can you imagine a doctor showing up to surgery without knowing how to operate, but still going to the operating room to give it a good effort? That doctor simply operating and hoping for the best? As crazy as this sounds, this sort of medical care is what MANY mothers of children with Down syndrome face daily when taking their children to the pediatrician.

In spite of discussing our prenatal Down syndrome diagnosis with my kids' pediatrician and asking her if she felt comfortable being her main healthcare provider, she was absolutely clueless when the time came to do check-ups for our daughter. I was the one who went to the visits prepared, armed with a list of the regular check-ups my baby needed. My pediatrician simply wrote down the prescriptions, literally reading from the copy I made for her. She was completely unaware of what tests/routine check-ups needed to be done for a child with Down syndrome.

Now, let me tell you something. This happened in one of the most prestigious pediatric practices in a big city (Miami). So what exactly is happening to families with less access to quality medical care? Most importantly, what is happening to those children?

Pediatricians are too often ignoring the medical needs of the Down syndrome population until AFTER symptoms appear. This is more than unfortunate, since some symptoms only appear after it is too late to fix the issue and avoid permanent damage. For example, when thyroid monitoring is ignored, the brain development that could have taken place if the thyroid function was optimal is long gone when found later than the age of three.

Do you know what is shocking here? The doctors are the ones that tell you all about the potential health complications your child will face from having Down syndrome. But, that is typically the limit of their knowledge. Because they do not seem to understand how these health complications arise. And that most of these complications could be avoided with proper preventative care. Care that could likely be have been provided even with the doctor's ignorance of why the complications occur if they would have simply followed available healthcare guidelines to prevent/monitor such health complications.

I was beyond shocked to read the American Academy of Pediatrics document called "Health Supervision for Children with Down Syndrome". I have been referred to the AAP many times by my kids' pediatrician when I had questions about supplements, etc. How ironic that she sent me to a website for other things that she apparently has never bothered to visit to learn how to monitor my daughter's health.

I need to add that my daughter is not her first patient with DS. She proudly told me about a grown man with Down syndrome who was her patient. So, in about 25 years, she has never cared enough about the Down syndrome population and HER PATIENTS to learn more about how to serve them.

Over the past few weeks, I have learned that I am not alone in this. When I shared a picture on Instagram showing the necessary thyroid monitoring for kids with Down syndrome, I received hundreds of messages from moms who were absolutely unaware that thyroid function even needed to be checked regularly. How is this possible? I am simply baffled.

My question for the American Academy of Pediatrics is: how is it possible that with continuing medical education that pediatricians are not able to stay informed? Frankly, this is not even "staying informed" since Down syndrome is not a newly discovered condition. Down syndrome is the most common genetic condition in the world. The guidelines already exist. How are these professionals allowed to ignore them?

It is shameful that the parent is the one who needs to train the doctor about a commonly known genetic condition. I know that the AAP could do better. It must do better. And I am going to continue to press the AAP and the medical community until it does do better.

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