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Megan’s Story: The Christmas Miracle

April 30th, 2022  | HIElights of Hope

Name: Megan Carlson

Location: Minnesota, United States

Child’s Birth Year: 2016

Keywords: Seizures/Epilepsy, Cerebral Palsy, Communication Challenges, Moving States

When Megan first found out she was going to be a mother, she had a whole future built inside of her head. She envisioned herself holding Cole for the first time, her husband, Jeremy, by her side. She envisioned herself driving the minivan to Cole’s soccer games on Sunday mornings or running around with him in the backyard. She envisioned herself giving Cole a big bear hug after she got home from her accounting job in the evenings. But in December 2016, with the birth of Cole, the future she had envisioned so clearly seemingly morphed into an unattainable fantasy.

Megan had a completely healthy pregnancy up until the thirty-four-week mark. During her last trimester, Megan’s blood pressure became elevated, so she was monitored more closely. Megan didn’t quite have preeclampsia, but since her blood pressure wasn’t going back down, she decided to have a C-section at thirty-seven weeks. Two days before her scheduled surgery, Megan noticed that she couldn’t feel Cole move at all. She went to the hospital to get checked out for decreased fetal movement.

For two hours, Megan just sat there, thinking she had overreacted and that the doctors would tell her to come back in two days. But when the doctors finally approached her, they said that, because Cole’s heart rate was pretty flat, the best course of action was to have the C-section that day.

When Cole was finally delivered, the doctors noticed a true knot in the umbilical cord. Cole made two tiny cries, but then immediately fell silent. He was having trouble breathing on his own, so was immediately intubated and rushed to the NICU. After Megan went to the recovery room, she was informed that a fetal-maternal hemorrhage caused an HIE event. For the next seventy-two hours, Cole underwent cooling treatment, so Megan and Jeremy weren’t able to hold him. Four days after he was born, an EEG showed that Cole essentially had no brain activity, his MRI showed extensive global brain damage, and he still wasn’t breathing on his own. The doctors said that, because his brain stem was severely affected, his organs would most likely never be able to function properly.

With the prognosis looking entirely grim, Megan and Jeremy made the decision to take Cole off life support. That day, family members visited to say goodbye. During the night, Megan and Jeremy snuggled up with Cole, savoring what they thought would be some of their last moments with their son.

However, throughout the night and into the next day, Cole’s breathing and heart rate seemed to be normal. Megan and Jeremy remember thinking, “Well, now what?” In the course of merely five days, they were forced to adjust their expectations from Cole living to Cole dying to, now, Cole existing on the fringes between life and death. The doctors told them, because he was unexpectedly breathing on his own, it might take Cole a few days, or even a few weeks, to pass away. But they still remained firm in their belief that he would soon die. Megan and Jeremy decided that, if that were to be the case, they would rather spend the time they had left with Cole in the comfort of their home environment, especially during holiday season.

Cole was discharged three days before Christmas with home hospice services set up. On Christmas Eve, Cole fluttered his beautiful eyes open for the first time, and everyone began freaking out—Megan referred to it as a “Christmas miracle.” Moreover, even though the physicians consistently said that, based on his MRI, he would never suck or swallow, Cole began drinking out of the bottle, receiving enough nutrition to have his first “meconium poop.” Once Cole started improving, hospice told Megan that Cole was not a hospice baby. Instead, they advised, Cole should go back to the hospital.

Upon his return to the hospital, Cole was hooked up to an IV, since he was dehydrated and had electrolyte imbalances. Megan and Jeremy again received the same spiel from the physicians—they just needed to take Cole home and let him pass away peacefully, since his MRI scan essentially left no room for hope. This time, however, Megan and Jeremy didn’t passively listen to this recommendation. None of what they were hearing about Cole’s lack of capabilities aligned with what they were seeing. The doctors said he wouldn’t breathe on his own, but he was. The doctors said he wouldn’t suck or swallow, but he was.

Megan and Jeremy ultimately decided to go to a different specialty hospital in Minnesota to get a second opinion. At this new hospital, the care that Cole received was great, and it finally felt like he had a team who was rooting for him. As Megan and Jeremy soon learned, brain swelling can be mistaken as damage on an MRI. On Cole’s initial MRI, his brainstem and cerebellum were swollen, not actually severely affected by the HIE—the main damage was only localized to the cortex.

In the future, Megan hopes healthcare providers won’t merely look at an MRI and automatically shove a child in a box based on what the textbook says. Cole’s original providers were unwilling to change their initial diagnosis or listen to Megan’s valid concerns. Megan would emphasize to physicians the importance of showing humility in their interactions. Of course, providers should not give a false sense of hope, but that doesn’t mean they should give a false sense of hopelessness either. It’s okay to voice uncertainty if it exists.

Despite the initial hurdles, Cole is thriving at four years old. He works extremely hard in physical therapy and occupational therapy, and Megan is grateful that he has rarely had any major ailments since infancy. Cole is a pretty mellow kid, and he doesn’t really whine or cry unless he is seriously in pain. He has the most brilliant smile and giggle, and he constantly keeps Megan on her toes. Some days, when Megan thinks he is going to do great at therapy, he’s a limp noodle, and other times, when she thinks he may not do so great, because he didn’t get to take a nap, he is truly a rock star. Cole shows Megan, time and time again, that he does things in his own time—no one but Cole can write his story for him or determine when he will accomplish certain milestones.

Even though Cole is nonverbal, nonmobile, and has a G-tube, he still has a personality. Megan wishes that, when people in public see him in his stroller wheelchair, they would see more than just a little boy to be pitied. She wishes they would see his grit, his goofiness, or the way his eyes move, showing he is taking in all of his surroundings. She knows not everyone will see this about Cole, but as long as she does, that’s what matters most.

Megan is unbelievably grateful for each morning that Cole wakes up, especially given his struggles with seizures. Hope for her is staring into Cole’s beautiful eyes and knowing that she and Jeremy are doing everything they can to make his life as good as it can be. On those occasions when she gets a smile from Cole, confirming that he is content, that’s it—that is the purest manifestation of hope.

For Megan, hope did not always look this way. Throughout Cole’s lifetime, Megan’s hope has evolved, and she knows it will continue to evolve. When he was first born, her hope was that the doctors were completely wrong, that there was not actually any brain damage, and that Cole would be “fine.” Now, as she has adapted to her “new normal,” so, too, has her hope. Megan doesn’t hope for a life without disability for Cole anymore, but, instead, she hopes Cole is as happy and comfortable as he can be. It hasn’t always been easy to let go of that initial version of hope—for every milestone Cole hasn’t reached, there have been tears of grief. But for every inchstone Cole has reached, there have been even more tears of overwhelming happiness and pride. If Cole is fighting, Megan is sure going to fight and advocate for him too.

To HIE parents just beginning their journey, Megan urges them to remember that no MRI can dictate what the future will look like. They should do their own research so they know what questions to ask the doctors. What helped her was reaching out to other HIE parents who had been through similar experiences for advice.

It wasn’t until Megan was personally impacted that she realized how drastically support for families of children with disabilities varies from state-to-state. When Cole was born, Megan worked in accounting full time, with her parents taking care of him every work day. But she soon realized this care plan wasn’t feasible. Not only would it grow increasingly harder for her parents to carry Cole as he grew bigger, she knew they also wanted to have their relaxing retired life. Megan realized that, if her family made the twenty-minute move from where they lived in Wisconsin to Minnesota, she, as a parent of a child with disabilities, would be eligible for Minnesota’s waiver program. This program gives her an annual budget to care for Cole at home, which enabled her to quit her job. While she acknowledges that a twenty-minute move across state borders isn’t as life changing as moving farther away, she challenges other families to do things that may be initially difficult but that will make their lives easier in the long run—whether that is moving to a state more supportive of people with disabilities or moving closer to family who will help with child care. In the future, she hopes more states embrace disability rights, so that parents aren’t forced to make these difficult transitions to begin with.

Megan shares her story because she wants to be part of the movement to promote accessibility and end the age-old stigmatization of disability. People who aren’t directly impacted by disability might not think the absence of ramps to access stores or restaurants, for instance, is the be-all-end-all. However, it’s extremely challenging to take Cole anywhere when only one out of the twenty restaurants in their town has a ramp for his stroller wheelchair. She hopes people understand that those in the disability community don’t need anything revolutionary, flashy, or exciting. All they need is to be able to get places and participate in societal experiences. Just because Cole cannot walk to a slide or verbally express that he wants to go down a slide, does that mean he shouldn’t have the opportunity to go down the slide?

In addition, when Megan takes Cole out in public, she notices people often silently stare from afar, wondering why such a large child is still in a stroller. She wishes people wouldn’t be so afraid to come up to her and ask the questions they so clearly have—a disability is not some unspoken secret to be ashamed of.

Megan will continue to be open about her experiences to spread much-needed awareness and help people realize that, no, those with disabilities are not the same as everybody else. But just because they are different, it does not mean they are less than, nor does it mean that their lives are less valuable. While Cole may not be able to run to the slide like his peers, he is able to show unparalleled resilience during his therapy sessions, and that is pretty incredible. He is incredible, her forever Christmas miracle.

 

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