My Daughter's Epilepsy Was My Wake-Up Call

This is a guest post by Nicole Lynn, an amazing mom whose daughter's seizures convinced her of the importance of modern medicine.

I am the proud mommy of a 3-year-old who was born with a midwife, breastfed for two years, carried in a wrap, fed homemade baby food, shared a bed with me and is fully up to date on her immunizations. I am also a doula and a strong advocate for natural childbirth, natural parenting and holistic health. I am writing this because I feel compelled to share that I am all of these things as well as pro-vaccine and there was a time where I did not know that it was okay to be both.

My daughter was not a planned pregnancy and so I did not have a lot of time to research parenting prior to becoming a parent. I went about educating myself the best that I knew how but much of my information came from the people around me who were well-meaning but sometimes misinformed. I have always favored natural and holistic medicine when caring for myself so when it came to caring for my daughter I thought I would make the same choice for her. I had a network of people around me who were very supportive of me and very supportive of holistic child-rearing. When the question of vaccines came up, it was unanimous — vaccines are poison from pharmaceutical companies that will cause irreparable neurological damage to my child. Of course I did not want that. Of course I wanted the best thing for my baby. Of course, I also did not want the people close to me to judge me. So we decided not to vaccinate.

Because of complications with my home birth we ended up in the hospital.  I was berated by doctors for my decisions on vaccines and essentially accused of child abuse. This did not help change my mind. Rather, it filled me with defiant rage as I exercised my rights to make decisions on behalf of my child with a rebellious conviction. I was no longer just protecting my child, I was also protecting my freedom of speech and fighting back against mega-corporations and the government.

The one aspect I was not thinking about was the most important one — the health and safety of my baby.

With my baby at home, I did everything as absolutely perfectly as possible to a neurotic degree. Consistently, the motivation for this remained a fear of judgment from other people, especially other moms, ESPECIALLY other “crunchy” moms. I was consumed by a need for perfection and acceptance.

My baby grew a lot, with big blue eyes and rolls of breast milk-induced baby fat. She never got sick, she ate perfectly, she reached all her milestones early, she was a healthy, happy baby. Then one day when she was 6 months old, in the middle of eating organic, steamed carrots, she stopped breathing. Just like that. I was not there, my husband thought she had choked and tried to dislodge a stuck carrot but there was nothing in her throat. She was simply not breathing and her body was completely rigid.

 She resumed breathing a few minutes later and started crying. I came home immediately and he explained what happened. As he was explaining it, it happened again.

 I called a nurse and she said to keep an eye on the baby and call back if it happens again. Not surprisingly, we didn’t sleep at all that night. The next day it happened again, but her body started twitching and I finally realized what I was watching was a seizure. I called the doctor again and they scheduled a series of neurological exams. Every test came back negative and over an agonizing five days the seizures became longer and more frequent. I took her to the emergency room, to her regular doctor, to the neurologist— they continues ordering more tests, the tests kept coming back negative and they kept sending us home. My husband and I slept in shifts, a couple hours at a time, he went to work exhausted, I felt like I was losing my mind. I cried hysterically every time I opened my mouth. I experienced a feeling of fear and helplessness like I had never known. Something was seriously wrong and there was nothing I could do and it seemed like nobody would listen to me. I became afraid that there would be a time where her face would turn blue and it would stay blue and she would never start breathing again.

On the fifth day, I filmed two seizures with my phone. I brought her to the emergency room again after a particularly bad one and I showed anyone who would hold still long enough to look the videos of her seizing. She was finally admitted to the children’s hospital and we spent a week there while they ran a lot of tests and experimented with many different medications on my precious, organic, toxin-free baby. We were extremely fortunate in that they found an effective medication quickly and she has had only 4 minor seizures in the 2 and a half years since diagnosis.

How is this related to vaccines? It’s not. My daughter’s neurological problems are completely independent and unrelated to vaccines. However, the experience woke me up.

When making the decision not to vaccinate, I never once imagined how it would feel to spend sleepless nights in a chair at the children’s hospital while my child suffered, while I didn’t know if everything would be okay. I began to imagine how it would feel to be sleeping in that same chair while my child suffered from something I could have prevented.

I realized that no amount of breast milk and organic mashed kale was going to protect her from illness and disease. I realized that nothing within my power could do anything to protect her from everything — but I wanted to make sure I did everything that was within my power. Not to protect myself, not to protect what other people thought of my mothering skills, not to protect an idea of what I thought child-rearing should be, but to protect her: my baby, whose life and wellbeing was solely my responsibility. I started to take that responsibility a lot more realistically, I did a lot more research, and I chose to vaccinate.

I also started to lighten up. I let her have moderate amounts of white sugar on occasion.  She even watches television sometimes. She is fine, the world hasn’t ended. And it’s a lot more fun than being so neurotic. 

People have asked me if I considered changing her diet to prevent the seizures, or weaning her off of the medication myself and switching to homeopathic remedies. No. I do not consider this. I have never considered this. Not even for a second. I take my child’s life seriously and I stick with what works. 

Amidst this heightened debate, I am happy that my child is vaccinated.  I am not angry at you for not vaccinating your child. I am grateful that we live in a society where we are all able to make our own choices about our families’ health.  I write this now because my perspective has changed and I am grateful to have had an open enough mind to make that possible. I am writing this to say that it’s okay to change your mind and it’s okay to make decisions independently from the people around you and I hope that whatever parenting choice anyone is making on behalf of their child, that the choice is being made for the child.