Hand to Hold's Official Blog: Written by Parents for Parents

Advocating for your child

This was originally published on my personal blog in July 2009:


The MRI performed right before Connor left the NICU found that he is missing a structure in his brain called the septum pellucidum. Connor’s ophthalmologist requested that he get another MRI to specifically visualize the optic nerve as it enters his brain, to better help him diagnose septo-optic dysplasia (SOD). Typically, a person with SOD also has thyroid issues, but fortunately Connor’s thyroid has tested normal several times. The MRI is just another step in ruling out any complications, like SOD.

So, in late June 2009, we took Connor back to Rush Copley for a simple MRI under sedation (since there’s no way a baby would hold still otherwise for the test). I had been prepped over the phone for the procedure, and we figured we would be in and out within 4 hours.

Shortly after arrival, we’re told that the anesthesiologist will be coming to see us about Connor’s intubation and general anesthesia. (WHAT?!?!) From this point forward, things just didn’t seem right.

The anesthesiologist was a nice enough guy, until he explained that due to Connor’s age and previous conditions, it was very likely that they would be keeping him overnight at the hospital. (This is where I started hyperventilating in my head.) NONE of this was explained to us over the phone, and at that moment, it just seemed wrong.

I kept thinking back to an e-mail I received from my sister’s MIL shortly before Connor was released (thank you, Debbie!), in which she encouraged us to be Connor’s biggest advocates and to not be afraid to question things medically. When you’re face-to-face with someone who knows 1,000x more about a situation than you do, it’s so easy and natural to trust everything they say and to take their recommendations as gospel.

We politely requested some time to discuss before they got things rolling. Made quick calls to the ophthalmologist (glad we had his cell #) and the pediatrician. Both concurred we could wait a little while, not have the test done that day, and reevaluate/reschedule when Connor was a little older. Feeling a little reassured, we gathered up our starving little boy (who had fasted for the past 6 hours) and took him home.

Still a bit unsettled, I called our old friends at the NICU to inquire about their standard procedures for Connor’s first MRI. I couldn’t recall anything more than sedation being done to him, and thought I would remember signing a consent for general anesthesia that close to his discharge. I was able to speak with one of Connor’s primary nurses who was shocked and surprised to hear that such extreme measures were being taken. She got the NICU director involved and he was equally stunned. Wonderful Dr. Ahmed called, reassured us, and advised us to ultimately have the MRI done at Lutheran General instead (even offered to handle getting the orders in). Connor was taken care of by such amazing people his first 4 months of life!

General anesthesia is risky, period. Especially for little ones. Needless to say, my little inquiry got a big ball rolling… calls were made to different department heads, and my understanding is that certain policies are being discussed and changed for the future at that hospital.

As unsettling as it was to leave the hospital without having the MRI done, it was so nice to be told by a trusted nurse and doctor that we did the best thing for Connor in leaving that day.

We never did get that MRI done, but that’s a story for another day… a story about doctors requesting tests and procedures to get their ducks in row when it won’t change their treatment plan, not even a little bit.

Have you run into situations like this?  Times where your own gut and instinct kick in and you have to tell the experts no?  When have you had to step in and be your child’s biggest advocate?

Aimee Sprik About Aimee Sprik

Aimee Sprik (IL) is mother to Connor, born unexpectedly early at 26 weeks, in December 2008, due to an infection. Connor, with his parents, survived a complicated 120-day NICU stay, which changed their lives forever. Since bringing her son finally home, she's felt passionately about volunteering her time and resources to supporting fellow NICU parents, both at the hospital where Connor was born, and by co-founding Life after NICU, an online parent support forum now moderated by Hand to Hold. You can follow Aimee on her personal blog, Sprik Space, or send her an email.

Comments

  1. We have experienced this several times, as I’m sure any parent of a preemie has. The first time was actually when we were still pregnant and we felt like we were getting pushed into having certain testing done, except that whatever they found with their testing wouldn’t change how they were taking care of us. It seemed like a no-brainer, why take the risk if it wouldn’t change anything? Thanks for this post! Sometimes it’s so hard to know if we are making the right choices based on a feeling or instinct, but I think so often those ARE the right choices!

  2. Hi Aimee!
    I’m an Aimee too! I came across this blog today and thought it was quite a coincidence to see you write about your son getting an MRI to diagnose SOD. I’d love to chat with you more about your son as my daughter (she’s now 13 mo, 90 days in the NICU) was initially diagnosed with SOD. My email is aimeelbenton at gmail dot com.
    Aimee

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