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How One Mom's Fight to Save Her Daughter Led to a Discovery All the Doctors Missed

Photograph by Twenty20

When Zoe Grey's* daughter was born, the adjustment to motherhood, combined with leaving her life in Brooklyn to live with her parents in upstate New York, was far more of an upheaval than she had imagined. Nothing was normal for her at the time, so even though there were moments when she suspected that something wasn’t quite right with her baby girl, Indigo*, she chalked it up to all of the life changes she and her husband were experiencing at the time.

Indigo stared at the ceiling fan for long periods of time, she didn’t seem to need hugs or cuddles as much as other babies. She didn’t roll over when friends’ kids were rolling over, crawl when other children were crawling, babble how other babies were babbling. Even with all of these milestones missed, Zoe was cautious not to self-diagnose her daughter. She wanted to let her daughter grow and learn in her own time.

It was eventually Indigo's inability to stand or walk on her own that were the catalyst for her pediatrician to do a number of tests that ultimately led to the discovery that Indigo had non-specific brain damage, the cause of which was not determined. These results began an entire new chapter of their lives.

Indigo continues to experience the world on her terms; she's a bright being to those who know her, flashing bright smiles and laughter, but only saying a few words and rarely engaging with peers for more than fleeting moments. Zoe and her husband tried to just keep on trucking and navigate the world with Indigo, but between them, they shared fears about what was unfolding.

For a year, they had speech therapists, occupational therapists, a special-ed teacher and physical specialists in and out of their house. Zoe felt traumatized, not from the intervention, but from being convinced that the brain damage was potentially connected to something that had happened during Indigo’s birth and that she was somehow to blame. The circumstances around Indigo’s birth were beyond her control, but as most mothers are aware, a mother’s guilt knows no bounds.

One evening, two years ago, Zoe and her husband were out to dinner with friends. They had left their daughter with a sitter when they received a frantic call: Indigo was having a seizure and was non-responsive. They rushed her to the emergency room to find their daughter unconscious. Indigo eventually woke up and the doctor sent them home, saying it was merely a febrile seizure.

Less than 24 hours later, she had another seizure.

Zoe was sure that her daughter had epilepsy, but the neurologist was confident that she didn’t and sent them home again. Life went on, but one morning, a few months later, Matthew found Indigo in the middle of a seizure and they had no idea how long she had been seizing. The result of the prolonged seizure was 20 hours of intubation in the ICU, followed by 12 straight hours of Indigo thrashing and calling for her mama and dada, over and over.

So, why wasn't this something any of the doctors brought up or thought to evaluate?

Zoe tearfully recalls what it was like during this harrowing experience. “I don't even know what to say to her, because I don't know what she likes ... she wasn’t talking, other kids were into things, but she wasn’t. And I just didn’t know what to say that would bring her back to us. That broke my heart. I hadn’t gotten the chance to really know my baby.”

Thankfully, Indigo did come back and the family continued to seek out providers to help them, eventually finding an excellent team in Boston. They finally diagnosed Indigo with epilepsy, but Zoe just had a feeling that there was still more to the story.

One night, after a long period of Indigo displaying challenging behavior, Zoe googled epilepsy and autism. The statistic was startling and she was shocked that no one had shared this information with their family. It is estimated that approximately 1/3 of people with autism also experience seizures. So, why wasn't this something any of the doctors brought up or thought to evaluate?

The medical professionals they had seen throughout the years said they were sure Indigo did not have autism. She flashed a smile when she walked in the room, she was social and she connected with people. All of the prior testing lasted no more than an hour.

The last time she was seen by a developmental pediatrician, when Indigo wasn’t focusing on the testing, the doctor ended the test and said to have her teachers send a report and the doctor would write a recommendation based on that. There was no referral or support offered at that time.

After her shocking discovery about the strong connection between autism and epilepsy, Zoe found an autism program through a local university on her own. Through this program, Indigo underwent a four-hour, extensive testing procedure which concluded with a diagnosis of highly autistic with an accompanying language disorder. After receiving this news, Zoe began to weep—not out of sorrow, but out of relief.

It's clear that we, as a society, need to change our cultural mindset around autism and help create awareness around how it presents differently in girls.

“Often times, people will say the diagnosis doesn't matter and you just support the child, but for me, personally, a diagnosis matters because now there are resources and programs. When you have a child who has different needs, it's like you're on a trail trying to find clues, there's really not a road map. Everyone always said Indigo was a mystery. Now there's a map."

More boys than girls are diagnosed with autism annually. The medical community has been operating under the assumption that autism affects boys more than girls, but recent studies show that perhaps the gender gap is not as wide as we had previously thought and that girls are more apt to “camouflage” the signs.

According to child psychologist Kevin Pelphrey, Director of the Autism and Neurodevelopmental Disorders Institute at George Washington University, who recently spoke about the preliminary findings in his study of girls with autism with NPR, “Brain imaging shows that girls with autism seem to have less of a disruption in the area of the brain that processes social information. Girls may be more likely to understand social expectations, even if they can't fully meet them.”

If it weren't for Zoe's constant vigilance and proactiveness, who knows if Indigo would ever have been diagnosed. It's clear that we, as a society, need to change our cultural mindset around autism and help create awareness around how it presents differently in girls. The earlier families get answers, the earlier they can begin supporting their children with appropriate programs and interventions.

Zoe hopes that by sharing her story she can be a lifeline for other families that are seeking answers. She wants others to know that they are not alone, that life can be messy and chaotic. “There's no playing it cool anymore, no acting as if we have it together. I often feel as though when we arrive somewhere, we have luggage that is flung open and the contents are everywhere. This was very hard for me. But to be honest, now I find it kind of liberating. We don’t have to fit in any predetermined boxes. Indigo living life on her terms has liberated us to do the same.”

*Names have been changed to protect privacy.

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