One of the worst things about having a critically ill child, is the knowledge that they are going through pain. In the NICU, babies are exposed to significant pain and suffering. Some of it is as a result of standard tests and procedures. One of the worst offenders is the ROP exam.
ROP (short for Retinopathy of Prematurity), is a disease of the eyes caused by prematurity in which cells grow abnormally. In worst case scenarios, babies can be blinded. In decades past, this happened quite often (Stevie Wonder is a famous example). But then it was discovered that high amounts of oxygen had a big impact, so changes were made to how preemies were given air. In addition, medical procedures have improved, and eyesight can often be saved if the disease is caught quickly enough.
So, there are good reasons for the exams. But they are uncomfortable to say the least. The squeamish of you may wish to skip on to the next paragraph. The baby is given eye drops to dull and dilate the eyes (those with kids can imagine how popular that is). Then, the opthamologist holds the eye open with a tool, and shines a bright light into the baby’s eye, while manually moving their eyeball around. The baby’s nurse is responsible for holding down the baby while this occurs, and parents are generally asked to leave.
On January 8th, Audrey had an ROP exam at the hospital. We were asked to return in 25 minutes. When we returned, the opthamologist was still performing the exam, which went on and on. We sat around the corner, hearing our baby scream. When we were finally allowed back to her, we were informed by the opthamologist that Audrey had stage 2 ROP. She would need to have weekly exams until it resolved.
Our suspicion was that the opthamologist performing the exam (a Fellow), was not very experienced with the exam (which is quite specialized). That seemed to be backed up by comments I heard about the excessive length of exams that day. The following day, I noticed when I arrived that Audrey was not opening her eyes. Further examination revealed that discharge from her eyes had caked them shut. As well, the tool had left a permanent mark on her eyelid.
This was the moment when we stopped being “easy” and started to be the “difficult” parents. Thinking about her next exam, and worried that she would once again be subjected to the inexperienced Fellow, we made our issues known and demanded that the staff opthamologist do her next exam (which he did). It was our first major experience with advocating for our premature child.