NICU – Do you have access to medical reports?

I did and I did not…

D., like other preemies in the NICU, had a huge file with scan reports, progress papers, medicines used, and growth chart and some more. Basically, anything that is related to her situation was in that file.

Initially, most of the nurses were very comfortable with me skimming through the file so I never even thought of compiling them myself. Until one day, a nurse did not let me see the brain scan report that came out the same day. She insisted that I needed to wait for the doctor and I couldn’t even touch the file. Then I realized, giving permission to take a look at the report really depended on the nurse.

I was extremely disturbed by such harsh behavior. 1- Did D. have something serious in her brain? 2- Why was I not allowed to see her file? I mean wasn’t it my right to have access to her reports? 3- Should I have had a word with this nurse to let her know that I WOULD read that freaking report.

I took a deep breathe. Then I asked around and found out that I needed to submit a request to get access to the reports. Tricky thing was that even when I made a request, they did not just give me access to every single report she had. I had to make a list of what exactly I needed from them: brain scan on this date, lung x-ray on that date, and so on.

I had to pick my battles so I requested the very important ones. Sometimes, when some nurses let me take a peek, then I quickly took a picture of the reports so I didn’t deal with the request process. (It required some follow up and wait, which I didn’t have the time for)

Having access to the reports comes handy.

You might want to get a second opinion from another doctor at another facility. In case you do, you need to have her medical history in detail with you during your appointment.

Also, if you want to insure your preemie with another insurance company later in her life, you need to provide all the medical reports, especially most recent ones that show no signs of the conditions anymore.

Finally, NICU doctors follow up with preemies only for a while post discharge and then they usually refer you to a pediatrician. Later in the process when D. was a bit older, I took her to a regular pediatrician at another clinic. I had to give the doctor her full history with reports, medicines, current conditions etc.

So, whenever you get a chance, it is worth checking how you can get access to your preemie’s medical reports and compile them yourself just to be on the safe side.

p.s. In the discharge day, hospital hands over the discharge report to you. This report is very helpful if you do not need to dig into details as it is a 3-page summary of the overall situation and treatments done. However, It definitely is not a document you would look at if you needed details on a specific issue your little one had.