024. An MRI Exam and Medically Advocating For My Child
Lessons learned from our recent experience with a non-sedated pediatric MRI exam
Hi friends! Long time no newsletters. I’ll be honest—it’s been a juggle to keep up writing, podcasting, actual work, travel, holidays, birthdays, and just life. On top of all that, I shared last week on Instagram that my daughter would be getting an MRI exam, which had been on our minds for a few months now. I’m keeping the details private for my daughter’s sake, but I thought sharing the actual experience of getting an MRI for a child and the feelings that went along with it would be general enough—and perhaps helpful for someone else who has never done it and has the same kind of worries I did.
A few newsletters ago, I wrote about my maternal grandmother passing away. The same day that I found out this news, my daughter started having some pain symptoms that we tried frantically to manage and figure out too. Long story short, that eventually led to this MRI exam to help diagnose any other underlying causes, and we finally did it last week. To clear the elephant in the room, she is currently (and thankfully) doing fine. We just needed to find more answers.
In the post above, I wrote about how I felt leading up to the MRI last week. As a mother who works in the medical field, you’d think things like getting an MRI would be smooth sailing for me. But no, it has been taking up a huge part of my mental space and a nagging background anxiety weighing down on me for the past few months, (even through my birthday and visiting Disneyland, which was last month).
And so, I share our experience on the other side with also the goal to maybe validate other parents who may be going through something similar. I hope some of the lessons we took from it might also be helpful to anyone else trying to medically advocate for their child. If you’re not interested in the MRI itself, you can jump to the last section on “Advocating for your Child” for my takeaways. =)
MRI with Sedation or Not?
When we were told that an MRI would be gold standard and necessary for diagnosis, we were also told that for a child at this age, sedation was recommended. It’s not something any parent wants to hear—that their child needs to be sedated for a procedure. I had never gotten an MRI before and truthfully didn’t know what it entailed, so my head was spinning.
We were told that since it would be a small enclosed space (closed-bore MRI like a giant donut tunnel), many young children would be too nervous and fidgety to lay still. And the thing about MRI exams is that you need to be absolutely still to get the clearest images. The upside of an MRI exam is that it does not use X-Rays and instead uses a large magnet and radio waves. So it is a pretty “safe” exam considering it does not using radiation. For the type of imaging the doctors needed in our case, MRI was the way to go, and we checked with two surgeons in the family/friend network to confirm.
The sedation part, though, was a bit scary and anxiety-inducing for me. And to be quite frank, it was just all the intrusive thoughts I had about the sedation going wrong. I know plenty of kids likely get it done with sedation, and the surgeon friend we consulted also said she would be comfortable letting her own toddler get it, as it is a lighter conscious sedation and not general anesthesia (where you could need intubation).
But it still felt scary to me. We asked questions about our options. How long was the procedure? (45 min?! Oy!) Was it possible to try without sedation? (Maybe. But it would be LOUD and long.) Did they have experience doing pediatric MRIs? (Yes.) It seemed also like the schedulers knew different answers than the actual technicians versus the providers ordering the test.
What I found out through the process of actually trying to schedule the MRI was that they also had an option to give the patient MRI-safe movie goggles to watch while lying still for 45 minutes. I later learned that we also had to do contrast imaging too, which meant an IV line placement. It was slightly disappointing that none of these things were told to me before we tried to schedule it and that I found out in different instances, but then, that’s the fragmented healthcare system for you.
So, we opted to try MRI without sedation and utilize the movie goggles for the duration of the exam. I learned this also meant a parent could be in the MRI suite with her. Worst case scenario, we would just reschedule for a sedated MRI if it didn’t work out. And just for information, sedated MRIs can be more tricky to schedule because your child needs to be fasting, arrive an hour before your exam, and no parent is allowed into the MRI suite during the exam.
Also, to be crystal clear, I don’t want to make it sound like sedation is a bad route at all. I just wanted to try without it first, if possible.
Prepping for the MRI
Once we decided on the non-sedated MRI to try first, I wanted to start mentally prepping my child for what was to come. It was hard to explain why she had to go into such a seemingly scary machine all on her own (no, mommy couldn’t hold her like in the dentist chair), but my kid does much better with plenty of mental preparation. We let her ask as many questions as she wanted and tried to explain as honestly as we could.
We showed her some videos (like this one) that showed other young children doing the MRI exam to better explain what she was going to be doing. We told her how long the exam would take; we called to ask if she could bring a stuffed animal into the MRI machine, as I mentioned in the above IG post. Initially I was told a blunt no by the scheduler, but after other calls and talking with the department manager, we were told to bring it and then “we’ll see.”
It was explained to me that the issue with allowing outside objects into the machine is that they are very cautious about anything that might possibly contain metal, since this machine is a large and powerful magnet. The manager told me that a long time ago, a patient who wore copper-lined underwear went into the machine and then got burns on their skin! (Why they even make copper-lined underwear is a whole separate discussion I wouldn’t know how to have…) So, I understand and appreciate their caution.
Then, the biggest prep we started to do was to have our child lie down flat to watch the TV during times she was allowed screen time (usually when I’m cooking dinner). We told her that she would be going into the machine with movie goggles on and that meant she could watch a movie of her choice. It was also because this option was available that we felt more confident that she had a chance at completing the MRI without too much movement.
We have a TV with a pretty large mount arm, so I was able to swing it outwards and tilt it to an angle where she could see it better when staring up from a supine position under the TV. Let’s just say, she milked “practicing” for her MRI for over a month and often reminded me she needed to lie down to “practice” (lol).
Then we also broke the news to her that they would have to place an IV in her arm for contrast injecting. We told her it was like a “glow in the dark” liquid to help the doctors take even better pictures of the place we needed to see inside her. We didn’t tell her this part until she felt more comfortable about the idea of the MRI first, so the news was broken down into digestible chunks.
For some kids, it might not help to see what it looks like, but for our kiddo, giving her an idea of what an IV was actually helped her out immensely for the day of. She winced a little but handled the IV like a champ! We also made sure to have her hydrate well in the days before the exam. On the day of, we made sure she had some fluids too, but I didn’t want to overdo it in case she needed to pee in the middle of the exam.
The Actual MRI Exam Day
On the actual day of the exam, we showed up half an hour before the exam. She had already chosen mommy to be the one parent who could go into the MRI suite with her. I filled out some forms claiming neither she nor I had any metal in our bodies (except maybe my bra—my husband pointed that one out because I forgot…oops lol). We had already been given the movie list ahead of time, so we told them which one to load in the movie goggles.
They gave both of us hospital gowns to change into (the child one was HUGE on her…), and then they brought us to the back where they were going to place an IV line on my daughter’s hand for the contrast. The exam would entail images before contrast and then half way into it, they would inject contrast through the IV line and take more images afterwards. They used a magnetic wand on her stuffed animal and deemed it safe, so she was allowed to bring it in!!
Once we went inside, they gave her warmed up MRI-safe blankets to wrap around her body and the stuffy (it was cold in there), cushions around her head, and then ear plugs before the headphones. The MRI goggles were attached and secured before she laid down and she looked very snug. I was also given headphones to block the noise. The techs were excellent with her and made her giggle a few times. To be honest, those movie googles were probably super helpful for other reasons— like not being aware that you’re actually inside a tunnel. Claustrophobic people might appreciate it.
What I didn’t know beforehand, though, was that I was able to stand by her feet while she was inside the machine and hold onto her legs. This gave me and her so much comfort knowing that she could feel my hand while she was inside because she had previously asked if she could hold my hand while she was in the machine and that obviously didn’t seem like it could work. But this alternative was better than nothing! So I stood for 45 minutes—maybe close to an hour if you count all the prepping and getting things set up too—but it was totally worth being able to offer my touch to my child.
And yes, the machine was SO LOUD. It was a combination of buzzing, vibrating, beeping, wailing, and almost a drill-like sound every time the machine was actively taking photos—each between 1-3 minutes at a time. I would hold my breath every time the machine made these loud noises, hoping my daughter would hold extra still during the active imaging session, and watching the countdown timer outside the machine.
In the end, she did it!! I was half expecting the technician to come out and tell us that they couldn’t get clear enough images due to some slight fidgeting I noticed. But she actually told us that my daughter was one of the best patients she has ever had and “still as a rock,” which was shocking to me. I guess those movie goggles and TV practicing really helped!
To celebrate not needing to redo this whole procedure or get sedation, we took her to get a treat afterwards and then a fun outing for the rest of the day! It felt like a huge victory and validation that we followed our gut instinct to try non-sedation and ignored all the naysayers. I was so proud of my baby!
Advocating for your Child
So from this whole experience, I took away several lessons that I wanted to make sure to highlight:
It’s okay to ask different people the same question.
The scheduler often doesn’t know the same things that the technicians do that the doctors do that the managers do. So, if you feel like the answer just feels off or questionable, ask a different person, maybe with a different role too. Then, hopefully someone will be able to give you a reliable answer.
Do your homework. Get a second opinion. It’s okay if you don’t decide right away.
We reached out to doctors who we knew might be familiar with the diagnosis we were seeking to make sure the MRI exam was standard and asked about sedation too. What I know about working in the medical field is that there are some really awesome patient advocates who will give you all the information and options, and then there are others who are just trying to get through their job that day. So you are entitled to research a bit or get another opinion—but I’d just take any Googling with a grain of salt. Best to ask another expert if you can!
Don’t get pressured into doing something that doesn’t feel right to you.
When I called to schedule, the first scheduler was the one who offered movie goggles to us and I didn’t even know about it at the time. But when I had to call back a second time, a different scheduler informed me about the IV line placement. She made it seem like, “Well, if you’re getting an IV line placed and your kid will be antsy about it, might as well go the sedation route.” She didn’t seem as supportive about trying the movie goggles and said “my daughter is very fidgety and wouldn’t be able to stay still.” She was also kind of impatient when asking us which kind of appointment we were going to decide on scheduling as they required different parameters. It felt like she was trying to push for the sedation, and in the moment, I was pretty uncomfortable that it seemed like the message we kept getting was to do sedation.
Trust your gut. You know your child best.
NGL, I wavered when that second scheduler said that since we were placing an IV anyway, why not just do sedation? I didn’t tell too many people about the MRI beforehand, mostly because it required so much explanation that I didn’t have the mental bandwidth to do each time. But also, a lot of times, I was met with skepticism from others that my child could hold still enough for long enough without sedation. And that made me question our decision again.
Still, deep down, I also knew my daughter’s temperament and capabilities. There were a few friends who confidently told me, “I know your daughter can do it!” And to them, I am deeply grateful for the support when I was showing moments of doubt. My husband was also the confident one who firmly said he believed she could handle an IV and use the movie goggles. I’m so glad I had him to lean on because I hadn’t felt this unsure of my motherly “instincts” since postpartum depression. In the end, I had to remember to trust that we knew our child best and we had to continue to advocate for her.
Ask to speak with a manager.
After getting two different experiences with the schedulers and after a session with my therapist, I decided I wanted to speak with a manager because I really wasn’t sure what kind of department we were walking into. Did I need to schedule elsewhere? Why wasn’t I given all the information the first time about IV contrast? And I’m really glad I did speak with a manager because she gave me much better background and reassurance that their team was one of the best prepared for pediatric MRIs. She even offered to order an MRI safe stuffy for my daughter to hold inside the machine or at least check again if we could allow our own in. She also said the radiologists would completely agree to try non-sedation first, if it were possible on a child this age, which I found the most reassuring thing of all to hear. (But it was not the original thing I heard from our provider.) And on the other side of this, the MRI exam day went very smoothly with fantastic nurses and techs, so I am glad we stuck through it.
The mental preparation helped tremendously. My calm also helped my child stay calm.
I definitely think our preparation paid off, and I’m glad we introduced it early on to her. But I think *I* also needed the mental preparation myself. I had to remember that while I was a ball of anxiety and projecting worst case scenarios, I couldn’t let her see me like that. I had to show her my calm so she could feel at ease too. Easier said than done, but like Dr. Becky likes to say…you need to be a “sturdy leader” for your child, especially in turbulent times.
So, that’s the story and the lessons. Thanks for reading this far if you did! This was just the hurdle of the exam…next, there’s the results, which I won’t be sharing here. I know this may be a rare thing that a parent has to go through, but I hope our journey might help another parent out there with some ideas on how to prepare for any kind of medical procedure/exam or what kinds of questions to ask if you’re in this situation. I’m no expert in this; just a mom sharing her experience from the patient side. :)
With that, I wish everyone a happy holiday season with your family and loved ones! Hope you have some time off to enjoy together and hold each other close. Health is such a huge blessing, and we never take it for granted. Be merry and safe and well.
xo,
Jasmine