Name: Megan Carter
Location: Ontario, Canada
Child's Birth Year: 2017
Keywords: Cerebral Palsy, Advocacy Work/Blogging
Megan and her husband, Carl, are parents to a five-year-old daughter, Mya. Megan works as a union leader at a nearby college, while Carl works as a massage therapist and personal trainer. Megan’s pregnancy with Mya was relatively uneventful, so she never expected that the labor and delivery process wouldn’t also be smooth sailing. Even thirty-six and a half weeks into the pregnancy, when Megan went in for a check-up due to decreased fetal movement, she wasn’t worried, as the obstetrician reassured her that everything was fine.
A few days later, however, Megan noticed that Mya wasn’t moving at all, so she decided to go for an appointment, just in case. Megan entered the office of her obstetrician, thinking she would just be told to go home like she had been a few days prior. Instead, she saw panic spread across her doctor’s face as she was told that the delivery needed to happen right now. Carl was trying to get there as fast as he could, but, by the time he arrived, Megan had already gone in for her emergency C-section.
Because the umbilical cord had been wrapped a few times around Mya’s neck, she was born not breathing. It took her seven minutes to be resuscitated, and her Apgar scores of 0, 0, and 1 were the worst imaginable. She was intubated and prepared to be transferred to the highest-level hospital in Ontario. Megan was only able to see Mya for two minutes before the transfer, and, because she was recovering from the C-section, Megan was unable to accompany her daughter. Upon arrival at the larger hospital, Mya was cooled and in a coma-like state for five days. Megan and Carl always envisioned the happiness they’d feel as they held their first child together, so it was heartbreaking for them not to be able to touch baby Mya.
Mya experienced seizures during this time, and, when she was finally fully awakened, around a week after she was born, she had an MRI. The MRI showed moderate to severe global brain damage. The meeting discussing the MRI results was terrifying, and Megan remembers yearning for some semblance of clarity, for someone to help drag her out of the dark hole she felt buried in. However, the neonatologist reiterated that, with HIE, this uncertainty really is inevitable. At this point, Mya might be able to walk, talk, see, hear, and meet all her developmental milestones. But she also might not be able to do any of these things, or only some of these things. Only time would tell. The story Mya was writing for herself, and for her life, was yet to be published.
For the next two weeks, a major focus was trying to get Mya to feed from a bottle. She was finally able to drink the minimum amount of milk required to be discharged, so she was transferred back to the smaller hospital where she was born. Megan was ready to take her little girl home, into an environment of warmth, instead of one filled with cold, sterilized rooms. However, Mya’s health unexpectedly started to decline again, so she was transferred back to the larger hospital.
The back and forth, from hospital to hospital, was awful. It seemed like every time things began to look up, they were thrown yet another curveball. The doctors discovered that Mya had an infection in her belly due to an umbilical catheter that had been left in for too long, leading to blood clots and liver damage. It was surreal how quickly Mya deteriorated back to her original birth state, and, from there, it was a slow and long stabilization process.
During the time in the hospital, nurses ran out of spots to put needles in for Mya, so they started inserting IVs into her head. Megan vividly remembers the sounds of Mya’s visceral screams of pain and just feeling in her gut that something was wrong. She told the nurses her concerns, and, even when they said it was probably fine, Megan continued to advocate for her daughter and listen to her “mom instinct.” They finally took the IV out, and, to this day, Mya has a scar on her head from it. Thus, Megan urges other parents to not be afraid to use their voices. At the end of the day, they know their children best.
During the NICU experience, Megan was grateful to have discovered Hope for HIE through her incessant googling. When Megan watched Mya in the NICU, next to the other babies, she noticed that, while everyone else kicked their legs frequently, Mya seemed so still. Megan felt utterly confused, not knowing what this meant. Luckily, by reading through the posts of other parents in Hope for HIE, Megan found out this was an early sign of cerebral palsy, which Mya was diagnosed with later down the road.
Without Hope for HIE, Megan would never have known to get Mya started in various therapies from such a young age. Starting at six months of age, Mya received an unconventional, unique type of physiotherapy called “movement therapy.” Essentially, it is about training your mind that your legs can move. Mya remained in that for a couple years, and she has excelled beyond all expectations—she wears AFOs and braces on her legs, but she can walk, talk, and hear. Mya is also in speech therapy for delayed speech, but she is making great strides. Now, as a four-year-old, Mya is vibrant, energetic, and constantly on the move. She absolutely loves gymnastics, flipping around, being outdoors, and going on the monkey bars in the park. Because the lower part of Mya’s body is weaker, it’s almost as if she has compensated for this by having super strength in her arms and upper body!
It was a long road to reach the place they are at today, especially during the initial years. When Mya was just beginning therapy, Megan constantly worried whether Mya would ever catch up to her peers and meet her milestones. If she could go back and change her outlook, she would try to enjoy the newborn stage a little bit more and focus on being present with Mya. Those days when she felt so mentally drained, Megan wishes she’d allowed herself the grace to just relax and watch that TV show she’d been meaning to catch up on. She knows it is certainly easier said than done, but she would tell other HIE parents to, as best as they can, savor heartfelt moments with their children and engage in self-care.
During days when Megan was hung up with that suffocating question of why this had happened to her, she held on to a piece of advice that one of her close friends told her right after she found out Mya had HIE: “Even if you had the perfect pregnancy that you always dreamt of, something could have happened later down the road to Mya. There are so many children that encounter different types of struggles at various stages of their lives, and no one ever really knows what will happen. All you can do is focus on living your best life, not anybody else’s best life.”
For Megan, this message encompasses what hope looks like for her throughout all of this. Instead of holding the mindset that she’ll be happy once Mya reaches a specific, tangible milestone, hope for Megan just means seeing that Mya is happy. Mya has this unbelievable, awe-inspiring resilience, and when she is having the time of her life on the monkey bars or flipping around, she isn’t burdened by the fact that she has to wear a brace on her leg. She just focuses on having fun. When she falls down, she stands right back up. If Mya lives unhindered by her diagnoses, why shouldn’t Megan do the same?
Mya truly is Megan’s cerebral palsy champion. Through her super strength and tenacity, Mya has shown Megan that children are stronger than we think. She has also inspired Megan to find that same strength within herself. In addition, what Megan loves about Mya is her ability to let go of grudges. Mya might be mad for five seconds, but Megan can quickly change Mya’s perspective and get her smiling again. Megan tries to emulate this quality in herself, and she has realized that, by not staying tied to anger, she has allowed room for so much freedom and joy into her life. Mya has also opened Megan’s eyes to the world of disability rights, accessibility, and inclusion. Megan wholeheartedly believes that, if we begin teaching children from a young age to be accepting of people with differences, the world can be a better, more inclusive place for everyone.
To promote this crucial concept of inclusion, Megan wrote a children’s book, Mya the Cerebral Palsy Champion for Mya to bring to school and show her classmates. The book promotes the idea that, just because Mya, or another child with cerebral palsy, may not be as mobile as other kids their age, that does not mean they can’t participate in activities like everybody else. Even though a child with a disability may be “different” in certain aspects, they still experience all the same desires of wanting to have fun and be included. And, even though they may not be able to run as fast, or it may take longer to walk up stairs, difference does not equate to “less than.” In fact, without differences—difference of abilities, perspectives, interests, or experiences—the world would be a far more boring and far less progressive place.
Since publishing the book, it has blown up, extending even beyond Megan’s circle of family and friends. In conjunction with the book, Megan also advocates for inclusivity through her Instagram account, @cpchampionmya. By capturing Mya’s weekly adventures and her journey with cerebral palsy through photographs and TikTok videos, Megan hopes to further her mission to normalize differences and end the stigma surrounding disability. Megan hopes to share the knowledge she has learned from Mya with others so that more people can see how truly amazing life can be, even with disability. She also hopes that more people will realize that not everyone with HIE, or a certain disability, fits inside the same box—not all children with HIE have the same diagnoses, and not all people with cerebral palsy are in a wheelchair. It is through continuing to push out these messages that real change can happen.
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