It wasn’t easy, but this is how my husband and I decided that major surgery was the best option for our 5-year-old. If you’ve been in a situation like this or find yourself in a similar situation right now, I truly hope that my family’s experience can offer you some comfort and support and help you feel less alone.
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So here it goes. A decision like this is not one that parents make lightly. While my husband and I had time to process everything and thoroughly discuss the pros and cons of surgery before making a decision, we know that not every family is that lucky. Here are the stages that we went through to arrive at our decision.
Stage 1: Trial and Error
Our daughter had a large stroke at birth, which resulted in a seizure disorder and a rare form of epilepsy (ESES). She couldn’t get quality sleep regardless of the length of overnight sleep she got. She was always tired and dysregulated, so she couldn’t comprehend new information in the classroom. Also, she had behavioral issues at school and home and had heightened ADHD symptoms as a result of her tiredness. We were struggling and so was she. So we tried several different medications and several different doses and combinations of medications. We even changed neurologists. And when none of it worked, the next option was surgery.
Stage 2: Research and Conversations with Doctors
Okay, so stages one and two happened kind of simultaneously. Our daughter had been seeing the same neurologist since she was about seven months old, and we had always liked working with him. However, we began to feel that he was overly cautious with treatment by not offering solutions and suggesting that the status quo was acceptable. We did not agree.
Once we had a formal diagnosis of ESES, I began to research other hospitals and how to get a second opinion. I found a few things. First, this is not a highly researched condition so finding information about it was not easy. Second, the information I did find about it described our daughter to a T. Third, if the first couple of medications we tried didn’t work, others were not likely to work any better and surgery would likely be the best option.
Stage 3: Frustration, Disappointment, and Advocating for My Kid
I discussed everything I had researched with my husband, with my sister, and with a couple of close friends. I had a plan going into our daughter’s next neurology appointment and felt confident that I could have a difficult conversation with the neurologist about my research.
At the appointment, the neurologist responded that the research was inaccurate and that she could potentially have surgery, but that we weren’t at that point yet. He said she could live with ESES and that she would grow out of it by 12-15 years old. Twelve to 15 years old? That was 7-10 years away! My immediate feeling was,
“You want my child to continue not being able to develop and being this tired and dysregulated for another 7-10 years, and you think that’s fine?”
This was not going to work. I asked about getting a second opinion, and the neurologist suggested that another member of his team could offer one. The other doctor had recently finished an Epilepsy fellowship at one of the hospitals I had researched and he recommended meeting with him. I agreed with a significant level of skepticism. I thought, “He just finished a fellowship, so he’s not really that experienced . . . shouldn’t we be finding someone who is an expert in the field and can give us the best guidance possible?” I was committed to the idea that we would likely need to travel to Colorado, Arizona, or Texas to get the treatment that our daughter needed.
Stage 4: Hope
I pushed to get an appointment with the new neurologist (the one I wasn’t so sure about) sooner than the other neurologist had proposed. We had that next appointment within two weeks of the last one! I figured that if this was the next hurdle before being able to get a referral to another hospital, we better get it done quickly. We met the new doctor and were blown away by almost every aspect of the appointment. His “bedside” manner, his detailed explanations, the questions he asked to get to know my child, his plan to progress through treatment options as quickly as possible, and his willingness to consider a surgical option for my child.
I guess this brings us back to Stage 1.
We tried everything and now surgery was the recommendation. But the neurologist didn’t just say, “She should have surgery.” Not even close. He had an hour-long phone conversation with me to go over all the pros and cons, statistics of surgical outcomes, and answered all of my questions.
Now, don’t get me wrong; the decision for our 5-year-old to have brain surgery was not an easy one, but ultimately, our decision came from a place of hope.
Hope for her to learn, grow, and make friends with her peers. We did not make this decision out of fear of how her seizures or epilepsy could affect her, though that was also a factor. We made this choice, knowing that if the surgery was successful, she would thrive. She could get quality sleep moving forward, progress in school, and focus on singular tasks for longer. She would find activities she enjoys and build friendships. For us, it was a positive progression for her to have surgery.
I cannot say that what we experienced is the norm. We had time to make the decision, time to plan, and we chose for our child to have surgery. We are grateful that surgery was not the only way forward, which is not the case with many medical conditions.
My family’s experience may be unique in some ways, but I don’t think it is unusual to go through some of the same “stages” we went through to get to our decision. The unfortunate reality is that, as parents and patients, we often have to advocate for what we need and do our own research to get the necessary care.
Originally published May 2024.
The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of ABQ Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.
