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What are some tips for parents facing serious conditions in their toddlers that require invasive surgery?
I’m going to tell the story of my daughter Aislin’s brain surgery, the things that lead up to it, and in weave in the things my wife and I did, how we felt, and how we made things work. I’m also going to include a lot of photos and videos in the hopes that they could help other parents going through the same thing. For any parent that has to go through this, there is no other single description of the experience other than it sucks. It was the worst experience of my life, by a long shot, and this is with everything going amazingly well and Aislin doing great today. This answer is going to be long, but I hope having context and details around my experience is helpful for anyone going through this.
In a kind of unfortunate way, we had experience with this kind of thing before our daughter was born. Our next door neighbor’s daughter was born with a genetic disorder that has resulted in multiple surgeries and them being in and out of hospitals nonstop. And we also saw the toll it can take on a family.
Here is Aislin a little over a year before her surgery. Hopefully her age is obvious from the picture.
Leading Up To Surgery
A few months before this picture was taken was the first time we were sure we saw it. Kids, especially at this age, sometimes just do weird things. They make weird noises or move in funny ways. And I don’t think I thought anything of it the few times and I wasn’t quite sure what was going on. Until we started to notice it more, and for longer periods of time and seemingly at random. She was having seizures. Not the kind you see in movies where they’re shaking uncontrollably for long periods of time. These were more subtle and brief, but very much noticeable.
Of course, the next thing to do is go to the doctor. My wife scheduled the appointment and took our daughter. After the appointment I realized that I had made a mistake in not going to that appointment.
Make Sure Both Parents Go To All Appointments
Coming out of that first doctor’s visit, our pediatrician thought that she might be experiencing what’s known as absence seizures, which they don’t even really diagnose until kids are at least 4 years old. After hearing this, I immediately looked it up and knew right away that this wasn’t what was going on. Upon speaking with my wife, I think there was a misunderstanding in communication between our doctor and my wife. We scheduled another appointment as quickly as we could and this time we both went and both described what we were seeing. After this, he agreed that they did in fact sound like seizures. But I definitely think having multiple perspective and descriptions of what were seeing was important for communicating with our doctor.
We sent this video over to our pediatrician on a Saturday. We had an appointment with a pediatric neurologist on Monday.
Coming out of that last appointment, our pediatrician scheduled an EEG. He also mentioned about making a referral to a neurologist after the EEG results. The thing he said that would be most helpful, however, is if we could capture a video of what we were seeing. Well, that’s much easier said than done for something that lasts just a few seconds and completely at random. So our first task was to get the results of the EEG and see what comes of that.
The EEG itself was done in the middle of the day and was about a 15 minute study. We had to have her be extra tired during nap time so she would fall asleep since the study is measuring brain activity during rest. As I’m sure any parent of a toddler knows, forcefully keeping a toddler up late and waking them up early is miserable for everyone involved. We did the EEG and got the results back. Nothing. Completely normal. I now knew what I needed to do.
Get The Doctors What They Need By Any Means Necessary
I was resolved to get a seizure on video. I woke up that Saturday, turned off the auto-lock on my phone, and kept the camera application open. I followed my daughter around like a hawk. I was determined to capture it on video, no matter how long it took. Luck was on my side that day, because it didn’t take long. That morning, I got exactly what I needed, and it was obvious. I ended up capturing 2 that weekend. This is what it looked like:
We sent this video over to our pediatrician on a Saturday. We had an appointment with a pediatric neurologist on Monday.
During our appointment, the neurologist asked us a lot of questions that I realized we had a general sense of but no concrete data. By this point we were seeing 2-3 seizures a day. We realized that we needed to have better information for our doctors. One of the first things we did was setup a Google spreadsheet and we wrote down every seizure we saw. The time, description of the episode, what she was doing, her reaction etc.
Make A Log Of What You’re Seeing
Our meeting with the neurologist resulted in another EEG test and an MRI. I think throughout the whole thing, this is where I was the most scared. We didn’t know what was really going on or what these tests would find. When I know what the problem is, I make a plan and go for it. Not knowing is gut wrenching. But as I mentioned earlier, seeing our neighbors go through something like this I think also gave us a bit of perspective on how to handle it.
Take The News As It Comes
It’s tough not to dwell on what could be. But the best thing you can do is just wait for test results and then figure out what to do. I could be good, it could be horrific. In this case, the MRI came back perfectly normal. They found nothing wrong physically. No brain tumors or lesions. The EEG however did pick up an abnormal reading on the right side of her brain. The diagnosis was now in: She has general epilepsy and we would now embark on taking medication to stop the seizures. Things are looking very positive now, all we need are some meds to fix the problem.
The medication was working well. We noticed a dramatic drop in her seizures and they didn’t last nearly as long. Things were looking good, until we started to see a slow increase in the seizures. Over the period of a few weeks, things started to get back to where they were. So we upped the medication. It helped, and then didn’t. Eventually we hit the max dosage. So the neurologist prescribed another type. The medications each treat seizures in different ways and sometimes you need to find the right combination. Great. Same thing, it worked great for a while, then slowly got worse.
When I know what the problem is, I make a plan and go for it. Not knowing is gut wrenching.
During this time, as well, our first neurologist left our provider and moved away, so we were assigned a new one. We met with him and explained what was happening. He wanted to see if he could get more data so we were referred to a children’s hospital to do a multiple day EEG study. This involved staying 3 nights in a hospital being hooked up to electrodes with a camera watching our daughter the whole time. The goal, again, was to capture a seizure. This was our first time staying with her multiple days in a hospital.
To do this test, both my wife and I had to take off work. We’re both fortunate in that we have good jobs that support families. When both of us let our companies know what was going on, each said, “Take as much time as you need.” While there are certainly federal and state laws (in the US) to help with any problem here, I would suggest …
If Your Employer Doesn’t Support You, Think About Finding A New Job
Hospitals are miserable. You’re going to be miserable, and so is your kid. I figured that going in. What really hits you in a place like a children’s hospital is that there’s a lot of other sick kids around. And some clearly and visibly have uncertain futures, and just the look on some parent’s faces tell the whole story. I don’t quite know how you prepare yourself mentally for that, but, yeah it’s a lot to take in. Thankfully for us, the first time we went in, we were only doing some testing, and didn’t have to worry about too many other things. But like I said, it’s miserable for everyone. Here’s what having your toddler hooked up to an EEG machine looks like:
Keep Your Kid Entertained As Best As You Can
Maybe that seems obvious, but an iPad and Frozen only works for so long. Bring other activities for them. Coloring, books, toys, blocks, etc. Aislin couldn’t leave the room because she was hooked up to machines, so we had to constantly find new activities. You will also need breaks for yourself, to do things like shower, nap, eat, or just a breath of fresh air.
If You Can, Trade Nights With Your Partner Staying In The Hospital
Around the time we started this EEG study, Aislin had started her third medication. The first 2 had virtually no real risks and the side effects would be minor. The newest one had the potential to cause a rash that when it appears, often leads to death. We’re starting to get into crazy medication territory. Of course, this also meant she was having much fewer seizures starting the new medication. It took until the 4th day to capture a small seizure.
At our next appointment with our neurologist, we explained that the third medication also wasn’t working. He wanted to try a 4th medication, this one with even more scary side effects. We had also read that if 2 medications fail, there’s less than a 10 percent chance that adding any more would solve the problem. We decided to seek another opinion.
If Anything Smells Funny, Get A Second Opinion
Our new neurologist agreed with our thinking. At about this same time, our provider had hired a pediatric epileptologist (a neurologist who specializes in epilepsy). She also mentioned that what we were observing and our results showed didn’t add up. Our neurologist took time out of her weekend to review our previous MRI, and wanted to see us. She found something, and confirmed it with another radiologist. The doctors missed it the first time. Our epileptologist immediately ordered another MRI (this time on a super high resolution machine), and another EEG study, this time lasting a full week.
We did the second MRI and had started the new EEG study before the results were in. While we were in the hospital, our epileptologist showed us the results. Here is what it looked like:
Preparing For The Surgery
The timing of this news was terrible. Just 2 weeks earlier, we found out my wife was pregnant with our second child. We were setup for a consultation with the pediatric neurosurgeon. Before that, our epileptologist gave us a bit of advice that we found to be extremely helpful.
Write Down All The Questions You Have For Your Surgeon
Also have your place of writing them down be easily accessible (my wife and I used a Google doc). You’re going to think of things randomly throughout the day. The moment it comes into your head, write it down. You should not feel bad about asking anything.
Google Your Doctors
When we did this, our neurosurgeon was in the news for doing some great things, but also his name was associated with a couple of things that weren’t portrayed in a very positive light. So we added our questions around what we saw in the news. And we asked him about it. You absolutely must have 100 percent confidence in your doctors. He explained what had happened, why, and what they do now to make sure things go well. We were satisfied with his response and were comfortable moving forward.
Next came scheduling the surgery. We were in a position where the surgery didn’t have to be done immediately, but we also couldn’t wait years to do it. The younger a kid is, the more flexibility the surgeon has in what he can do. And with my wife being recently pregnant, we decided to schedule it as soon as possible.
Try To Schedule The Surgery To Accommodate Your Ability To Care For Your Child
For us, making sure my wife wasn’t too far along in her pregnancy was the most important factor. We wanted our daughter fully done and recovered well before the second child was due. Luckily the recovery time from this is pretty short if all goes well. For this type of surgery in kids this young, there’s a greater than 80 percent chance of being cured. There were, however, some things to think about.
Understand All The Potential Side Effects
Because they were cutting out a piece of my kid’s brain, there are potential problems of her having some physical recovery, mainly in the form of weakness on one side of her body. There was no way to know going in what that might look like, but that also played into when we scheduled the surgery.
As of this writing, my wife and I have been together over 11 years. During that time, she says she’s seen me cry 3 times. Two of them were on this day.
We did try explaining to our daughter what was going to happen as part of this surgery. But not yet being 3, I don’t think she fully understood. The night before, we all stayed up late, and just played. We made her whatever food she wanted, watched any TV or movies she wanted, and just tried to have as much fun as possible.
The next morning started early. We had to be there at 6:30 AM and she would be in the operating room all day. The process started with Aislin getting changed into one of those lovely hospital gowns. She was then given a pill that made her loopy so they could get all the IVs going. Before going in, all the doctors met in front of us and discussed the plan. They also marked the ear on the side they were going to operate.
Make Sure It Is Part Of The Process For All The Doctors And Nurses To Discuss What is Going On Before Surgery
Before going in, we got one last picture of her.
The next thing that happened was the worst moment of my life so far. I’m not sure what any parent can do to prepare for having their toddler wheeled away for surgery like this. The moment I could no longer be with her is when I officially lost it. I wish I had a tip for this. I don’t.
My wife and I took a few minutes to collect ourselves in the OR prep area before heading out to the waiting room. We did our best to be ready for the long wait, but honestly I don’t have any great advice here. We brought a blanket and a tablet to keep ourselves as distracted as possible. I took several walks and we each took some time to go eat. The hospital rule was that one of us had to be in the waiting room at all times and we were planning to do that anyway.
There was a monitor in the waiting room that showed the status of patients. Many had already gone in and come out, while the status of Aislin remained simply “In Operating Room.” After about 5 hours had gone by, a couple of the doctors (we were told at least 8 were involved in her surgery) came out to talk to us. They had just finished mapping her brain, but hand’t cut anything yet. They were able to stimulate the area necessary to perform a seizure as well, meaning they now knew exactly where they were coming from. But, there was a problem. The tumor was dangerously close to her motor cortex, and we ran the risk of causing physical problems (i.e., limbs not working), requiring months of rehab and possible permanent damage.
Ask Your Doctors To Explain Things In Ways That Make Sense To You
We had to make a decision on whether or not to proceed. The recommendation from the doctors was to proceed as not getting the entire tumor could result in the seizures continuing and requiring another surgery anyway. In the type of work I do, I assess things (including risk) based on statistical probabilities. I asked to speak to the surgeon to get his confidence level on not hitting the motor cortex. He gave a generic type of answer, and I asked him to tell me what the percentage chance he thought we had of causing a problem. Thirty percent.
Find A Way To Keep It Together Just Long Enough To Make Decisions
I looked over at my wife and she clearly was looking at me to make the call. I took what felt like a few second but was likely a few minutes to weigh my options, before barely being able to utter the words telling them to proceed. Right after that, I lost it for the second time. One was the doctors volunteered to text me updates as they proceeded, which I’m sure is probably against some kind of official communication code. But I really did appreciate getting the updates as they came in. We got multiple updates over the next few hours, with the last one essentially saying that they got everything out and were able to avoid hitting the motor cortex. They were finally done.
The neurosurgeon came out and gave us the good news as well. We proceeded up to the Pediatrics ICU (PICU) where they were taking Aislin.
Coming out of surgery, your kid is going to be a mess. Aislin was crying and in a very weak and raspy voice, just kept repeating the words “Da da.” It took a few minutes for the nurses to unhook and re hook all the necessary cords and plug. Finally when I got the chance to hold her, she stopped crying. I also didn’t realize that I went into super-dad protective mode and hogged her for several hours, not thinking that my wife may have wanted hold her kid too. It was a long day for everyone.
Pack Extra Changes Of Clothes
Aislin puked on me twice that evening and I had to make a trip home to change and shower before spending the rest of the evening in the hospital (this time with more clothes). My wife and I traded sleeping in bed with her, and at some point I simply passed out missing some of the evening activities. It was a very long night that involved doing a CT scan as throwing up could be a symptom of brain swelling.
Going into the surgery we knew that some hair was going to have to come off. Before the surgery the surgeon said he would try to save as much of it as possible. We told him if he has to take any significant amount off to work, just shave the whole thing. Before we met Aislin in the PICU, a bag of her entire head of hair was given to us. I don’t know why, but I just find this to be one of the most beautiful pictures we’ve taken of my daughter. We took this the next morning.
Use Local Charities Available To Parents
Most hospitals with a pediatric unit that do these kinds of things have a charitable organization on site to provide parents some comforts. The largest one is the Ronald McDonald House, which can be found at many hospitals around the world. We personally used the services of JW House. In order for you to take care of your kid, you need to also take care of yourself. They also provide very affordable accommodations for families. Having something as basic as a good warm meal goes a long way. Use these facilities, and if you’re able to, give back .
Look Up Pictures Of What The Results Of The Surgery Will Look Like
If you’re in this kind of situation chances are the surgery will leave your kid with some kind of visible indication that they just had surgery. In Aislin’s case, it was obvious. I highly recommend you Google pictures of what it will look like before hand so you’re ready to see what’s coming. This is what the results of a brain surgery on a toddler looks like:
By this point, we could tell the surgery had been a huge success. She was able to do all kinds of things without any trouble. She was running, laughing, playing, etc. The thing that really brought her to life was just being out of her hospital room.
When It’s Medically Okay To Do So, Get Home As Quickly As Possible
As most parents of toddler’s know, they tend to have routines and environments they’re most comfortable in. The hospital is not one of them. By the third day, Aislin was already playing outside in the play area which became clear is what she really needed. But it was only for a short while, and she couldn’t wait to do more. The thing that I still can’t believe about all of this is that we had her surgery on a Wednesday and were home by Saturday afternoon. But it was without a doubt the best thing for her.
We’re glad to have gotten it all over with when we did. Aislin is doing amazing. We have noticed nothing wrong with her since the surgery. It’s been a little over 3 months and we have not seen a single seizure. The doctors, nurses, hospital staff were all the best we could have possibly asked for. As much as the experience itself sucks, it was by far the best thing we could have done for her. Here she is now, just having turned 3:
Chris Schrader has been published by Forbes, Quartz, and Software Engineering Daily. Read more from Quora below:
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