In a prolonged medical nightmare beginning with repeated resuscitation at birth, 2-year-old Grayson Hunziker has been diagnosed with everything from a rare form of diabetes to an optic nerve deficiency portending blindness to cerebral palsy to an underdeveloped brain whose scans make his mother think of the Apple icon.
“It looks like somebody just took a big bite out of his brain,” his 22-year-old mother, Makayla Hunziker, told The Daily Beast.
But despite multiple surgeries, along with countless tests and needles and tubes, Grayson maintained an unusually sunny disposition from the very start. And he kept smiling through it all, even as he suffered additional disorders such as rapid onset obesity, which caused him to go from 40 pounds to 85 pounds in the first half of 2021. He also had problems with his hypothalamus, which modulates blood pressure, heart rate and body temperature, among other things.
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“The control center,” his mother noted.
And with the smile came a determined spirit. One doctor said Grayson would never be able to self-support sitting up, but he did exactly that the very next day. He still could not stand, but he delighted in dancing while sitting and The Wheels on the Bus became a particular favorite. He proved able to identify colors even though four different doctors insisted he was permanently blind. And despite that Apple icon scan, he could count to 20 and recite as well as recognize all 26 letters of the alphabet.
“Gray’s just a naturally optimistic person,” his mother said.
Makayla was in nursing school and managed to continue her classes as she and her 24-year-old husband, Tyler, helped their son successfully cope with more medical problems than it seems possible for one tiny tot to endure. She researched her son’s many diagnoses and along with everything else she learned, she can now spell Periventricular Nodular Heterotopia, Schizencephaly, seizure disorder, Diabetes Insipidus, Hypothyroidism, Adrenal Insufficiency, Panhypopituitarism, Septo Optic Dysplasia and Optic Nerve Hypoplasia.
“I feel like I’m almost done with medical school,” she later joked.
Then, this July, Grayson was hit with the virus everyone can spell, the one that the anti-maskers and anti-vaxxers shrug off as not a real threat to kids. COVID-19 hit him harder than anything else had. His oxygen level dropped to a dangerous low and he stopped breathing more than once. He seemed to suffer full body cramps and he cried until he could cry no more. He became delirious.
“He would start saying things that really didn’t make any sense,” his mother recalled. “One of the things he kept saying was, ‘No, mama, no,’ and I wouldn’t even be messing with him.’”
The mother slept over at the hospital and was awakened before dawn eight days after he tested positive. She was told that Grayson had developed COVID pneumonia and his condition had deteriorated to the point he needed to be intubated.
She called Tyler, who was on his way to his job as a diesel mechanic and immediately rushed to the hospital. The parents were were asked to step out of the room and the mother leaned over Grayson’s bed to hug him.
“He didn't know what was going on,” she later said. “I just wanted to get some love in before they ended up putting him to sleep.”
The parents were told that the procedure would take at least an hour and they headed for a diner down the street to grab a quick breakfast. They were just walking in when the mother’s phone rang. One of the docs was calling.
“She said, ‘Hey, Makayla, I need you to come back to the hospital. Some things are going on and we need you here so you guys can make decisions for Grayson,” the mother remembered. “I’m like, ‘What are you talking about?’ She’s like, ‘Grayson coded and we need you to get back here so you can make decisions.’ I’m like, ‘What do you mean he coded?’”
The parents dashed back and they were allowed entry to the room even as the medical team continued to work on him. The parents were told that along with everything else Grayson had suffered a pneumothorax, or collapsed lung, and had stopped breathing twice when he was being intubated. His oxygen level had plummeted to an extremely dire low.
“Basically, what it came down to was he was going to be put on life support,” his mother recalled.
The doctors posed a question to the parents that has become harrowingly common during the pandemic.
“They wanted to know if we wanted to put him on life support or let him expire,” the mother recalled.
She hugged Grayson and dissolved in tears, wishing desperately that she could explain to him what was going on.
“Then they stopped talking and I was just staring at them,” the mother recalled. “I don’t know what I was waiting for,” she said. “They’re like, ‘Do you want us to do the procedure or do you not want us to do it?’ And I’m like, ‘What are you talking about?’ And then Tyler raises up, was like, ‘Well yeah, yeah, you have to do what you have to do.’ And they’re like, ‘Okay.’”
In the ensuing surgery, Grayson was connected to an ECMO machine that would assume the functions of his heart and lungs. The procedure was complicated by a vein that had been used when Grayson was intubated shortly after birth and was now too fragile to be used for ECMO.The doctors had to use a vein in his leg.
From July 26 through Aug. 9, Grayson was on ECMO and a ventilator. He remained on just the ventilator for another six days. He was no longer able to sit up or control his head.
“He literally was like a big newborn baby,” Makayla told The Daily Beast.
He suffered withdrawal as he was weaned off the accompanying combination of powerful analgesics.
“He would get a fever and he would sweat and he couldn’t sit still and he would have altered mental states and could have an emotional roller coaster,” the mother said.
He ceased making eye contact with her.
“He didn’t act like he recognized me,” she said. “He just didn’t act like he knew who I was. It was really hard. He wouldn’t give me a different kind of attention than he gave the doctors and the nurses. It was like we were all the same. None of the attention he gave me was like a kid would give their mom.”
He did not respond even to The Wheels on the Bus.
“It was like he had never heard that song before,” the mother said. “It was like he had no attachment to that song.”
And he lost that smile.
“It was like he was there but him himself as a personality was not inside of him,” the mother said.
One thing that had not changed was that he was always thirsty as a result of diabetes insipidus.
“Grayson’s natural state is dehydration,” the mother noted.
She poured some ice water in a 4-ounce plastic cup.
“He didn’t have the strength to hold the cup,” she reported.
And he now had difficulty performing tasks that involved multiple steps.
“If he had to chew and swallow, he would do one or the other,” she said. “He would chew and not swallow, or swallow and not chew so then he would choke.”
After five days, Grain recognized his father and then his mother maybe two days after that. But he continued to have sudden mood swings, at random moments bursting into laughter for no apparent reason, at other times erupting into inexplicable tears.
“Not like a painful cry, just like a genuine, heartbroken cry,” the mother said.
A doctor suggested Grayson might be experiencing the aftereffects of strong medications. The doctor also raised the possibility that the boy had suffered brain damage, whether from the sudden drop in oxygen level or the ECMO or COVID itself, or all three.
“So the likelihood of him having brain damage after all the trauma he went through wasn’t all that low,” the mother said.
He was discharged on Aug. 26. A doctor who examined him the next day said he was also suffering from cerebral palsy.
“So that’s kind of a new diagnosis for him that we just learned,” the mother said.
Two brief hospital admissions followed. He is now back home and, between random emotional eruptions, Grayson is again very much Grayson.
“He is coming back to himself,” the mother reported. “He has control of his head now. He has trunk support.”
He still requires oxygen now and then and he has not slept well since he got COVID, but his spirit has returned in all its resilient splendor.
“Grayson himself is such a happy person,” his mother said. “He’s always laughing and smiling and dancing. He’s a dancer.”
He needs only to hear a tune and he is moving with it. That includes the soundtrack from a Dwayne Johnson movie that was playing at home. A song suddenly ended after just a snippet.
“The music went away and he looked at Tyler and said, ‘Music?’ like, ‘Where did the music go?’” his mother said.
He has never learned to walk, but he is back to taking assisted steps and seems determined to do more.
“He’s learning his independence,” the mother said.
He remains in many ways a model child, knowing his boundaries and saying “please” and ‘“thank you” and “you’re welcome.” He has learned to sign when he has difficulty talking.
“He talks when he can and signs when he can’t and sometimes he will talk and sign together,” the mother said.
And his spirit continues to buoy his parents through what his mother terms “a crazy almost three years.”
“I don’t know anybody that can go through all this and be as positive as he is,” she said. “He’s the one who gets poked all the time with needles. He’s the one who goes through the worst of it and he’s the one who stays the happiest.”
She added, “I wish everybody could meet him. He’s just so fun.”
The mother, who is now a pediatric nurse working for Grayson’s primary care doctor, spoke to The Daily Beast this week about the medical nightmare that started with Grayson’s birth.
“They had to resuscitate him twice within 12 hours,” she said. “They thought he was just having a hard time adjusting to life outside the womb.”
After four days in the neonatal intensive care unit he seemed fine and was discharged.
“We thought we were taking home a perfectly healthy baby,” the mother recalled.
But, a day shy of his first month, Grayson began vomiting and ceased to eat and was in obvious distress. He had the first of many seizures and had to be resuscitated after he coded.He was admitted to the Pediatric Intensive Care Unit (PICU).
“Grayson underwent an extensive amount of testing to help better understand what exactly was going on,” them other recalled
In the days after Christmas, tests indicated that Grayson had Diabetes Insipidus, which involves blood sodium rather than blood sugar. He was also diagnosed with the long list of other disorders that his mother subsequently learned to spell.
To help with her son’s medical expenses, the mother has started a GoFundMe page.
Those who are touched by Grayson’s tale should also make sure to do their duty in battling the virus that so nearly killed him when he was already struggling with so much else.
But nobody should imagine that Grayson’s parents think they are anything but fortunate to have this kiddo who is still smiling after COVID and all the rest.
“I told Tyler I don’t think there’s any way we could get so lucky twice,” the mother said.
