The Internet is full of information. Some information is trustworthy and reliable and some is completely ridiculous. When faced with a new diagnosis or potential diagnosis, our first instinct is to turn to the Internet, type in the suspected diagnosis, and read the first item that pops onto the screen. More often than not, we take it as truth. We keep reading and reading trying to self diagnosis.
I am here to tell you: don’t do it.
Stay away from the Internet. Do not try to self diagnosis.
In the NICU, you find yourself being bombarded with new terms each day – sometimes multiple times a day. They are often big words that sound scary. Our first instinct is to get on our smart phone the second the doctor leaves the room, make a good guess on how to spell the word when typing it into the search bar, press enter, and read all the doom and gloom that is sure to appear on the screen.
Don’t do it.
When the doctor or nurse throws out a big word and they assume you know what it means and you don’t, stop them. Ask them what it means. Ask them to explain it in simple terms. Ask if the NICU or hospital has resources with more information about the diagnosis. If they don’t, ask for specific online reputable resources where you could find more information. If they don’t know of any off the top of their head, ask them if they could give you a list in the next day or so.
The Internet can provide a wealth of information when you are given a good place to start. When given the correct and reputable website, you can learn a tremendous amount of information about the diagnosis. It can often provide thorough resources, questions for you to ask the doctor, long term complications, treatment plans, and more.
When given a new diagnosis or potential diagnosis, it is difficult to distinguish fact from fiction. You can read one piece of information on the Internet, take it as truth, think the worst is yet to come, and find out that your child may not even have the diagnosis or has a mild case of the diagnosis. Researching information on the Internet can cause undue stress on the family.
We are over five years out from our son’s NICU stay. My son has multiple diagnoses as a result of his extreme prematurity. In the early days of our NICU stay, I was one to quickly jump on the Internet the second the doctor left the room. I unknowingly put myself through stress that I did not need. I read information that was completely false and because I was new to the NICU, I assumed it was true. I did not know how to discern correct information from information that was completely false.
I remember a NICU nurse telling me early on in our journey to stay off the Internet. She was right. When Joseph received a new diagnosis or had signs and symptoms of a diagnosis, was being given a new medication, was having a new test run, the NICU staff was wonderful in providing information to us about the diagnosis. They would answer our questions. If they didn’t know the answer, the would find it. If we wanted more information, they would give us a book or pamphlet to read.
It was only after I had a clear understanding of the diagnosis that I turned to the Internet. When given the right place to start, the Internet can provide a wealth of valuable information. Now that I know my son’s diagnoses, I often turn to the Internet because I know what information is fact and fiction. The Internet has allowed me to connect with other people, it has given me tools and information to provide my son’s teachers, and it has given me questions to ask doctors.
Be very careful when it comes to the Internet. Gather your information from your child’s doctors and nurses first. Have a clear understanding of the diagnosis. When in doubt, ask questions of the doctors and nurses before turning to the Internet. The Internet can be dangerous but it can also be wonderful when knowing what information to look for.