- May 26, 2022
Heartache is trying to get pregnant for five long years. It’s finally getting pregnant and finding out at 26 weeks there are complications with the baby.
Heartache is knowing your son was born weighing 1 pound, 13 ounces, and is struggling to survive. It’s not getting to hold him for a week and being told you can only touch him through the holes on the side of the incubator. It’s watching your toddler have up to 20 seizures every single day.
Alan and Katie Murillo, of Horizon West, had tried unsuccessfully for years to have a baby and were considering adoption when she learned she was pregnant.
“Lo and behold, we were graced with Myles,” Alan Murillo said. “We didn’t know if he was a boy or girl. We waited to be surprised.”
Katie Murillo’s pregnancy, while high-risk, was normal until complications arose when she was in her 26th week. Her doctor sent her directly to Winnie Palmer Hospital for Women & Babies, where she spent more than a month on bedrest with constant monitoring.
Less than five weeks later, on Sept. 20, 2013 — nearly nine weeks early — Katie Murillo gave birth to Myles, a tiny baby weighing less than two pounds and jaundiced.
“We weren’t allowed to touch him or hold him,” Alan Murillo said. “Any kind of overstimulation can cause (premature babies) to go into shock.”
“One thing we were told for premature babies is don’t expect him to cry,” Alan Murillo said. “And he came out crying. He was on oxygen. He kept trying to pull out the canula. He was a fighter. He came out a fighter and … on his own terms.
“One of the things about new parents is you always want to give the first bath to your child, you want to change the first diaper — and those were things we weren’t allowed to do,” Alan Murillo said. “It was about a week after he was born that she got to hold him.”
All of Myles’ feedings were done with a pump and, Alan Murillo said hospital staff measured his weight gain in ounces, not pounds.
“His diapers were the size of folded-up dollar bills,” he said. “Even a pacifier took up half his face.”
Myles had to weigh at least 4 pounds and pass a car seat test before he could leave the NICU and the hospital.
“Every day, when we were leaving the hospital, we would see the new parents coming out with their new baby and seeing the dad fumbling to get the car seat in and the mother sitting adoringly waiting,” Alan Murillo said. “Every day we had to watch this.”
Alan and Katie Murillo anxiously waited for their son to reach each of his “Myle”stones, as they called them.
Myles spent 54 days in the Neonatal Intensive Care Unit before going home. His family nicknamed him Miracle Myles because of the obstacles he was able to overcome.
Once Myles was home, the Murillos stayed in touch with all of his “ologists.”
“He had an ‘ologist’ for everything,” Alan Murillo said.
This included a cardiologist for a hole in his heart, an otolaryngologist for his ear infections and fevers, a neurologist for the frequent seizures he started having at age 2.
“He was having difficult focusing; it looked like he was staring off, maybe 10 to 20 seconds,” Alan Murillo said. “We could snap our fingers in front of his face and could get no response out of him.”
An electroencephalogram determined Myles was having absence seizures, and doctors put him on medication for epilepsy. His parents also put him on a ketogenic medical diet.
“He was limited to about 20 (carbohydrates) a day, and he could have as much meats and proteins a day (as possible),” Alan Murillo said. “Bacon was definitely a staple, but he had to have a carefully monitored diet. So we did this for about two years with the keto diet — and in that time it had definitely reduced his number of seizures to maybe 8-10 a day.
The key to reducing the seizures even further was a vagus nerve stimulator that was implanted in into his chest.
“It’s a pacemaker that sends an electrical current up the vagus nerve up to the brain,” Alan Murillo said. “It stops the seizure before it’s happening. We went to about one or two seizures a day that we could actively see.”
JUST LIKE IRON MAN
Myles, now 8, was concerned about being different because he has this device that is visible when his shirt is off. But the superhero fan became enamored with Iron Man because he, too, has to wear a device underneath his clothes that keeps him healthy.
“It’s always what makes you different that makes you special,” Alan Murillo said. “He loves that, and he lives that mentally every day. He pretends to be superheroes every day because he’s like Iron Man.”
Not only does Myles have Iron Man clothes and costumes, but his father converted the space under their staircase to a superhero hideout.
The good news is Myles’ VNS device has reduced his seizures to one to three a week.
The Murillos also have Buster, a support dog that alerts them when Myles has a seizure, especially at night. Buster has been trained to push a doorbell button in a metal disk on the floor.
“It’s a Godsend … having an animal that can detect a seizure 10 minutes before it happens,” Alan Murillo said. “He’s been a very welcome part of the family.”
A YEARLONG CHAMPION
Myles and his parents have embarked on a journey for 2022 that will have them advocating for pediatric healthcare. He was selected this year’s CMN Hospitals Champion for Arnold Palmer Hospital.
Every year, Children’s Miracle Network Hospitals asks member hospitals to choose one child to serve as an ambassador and the face for all the youth treated by children’s hospitals.
“We are doing a lot of speaking engagements to promote the Children’s Miracle Network as a charitable organization,” Alan Murillo said. “Everything we do to raise money stays locally.”
The Murillos also have attended dance marathons at local schools, including West Orange and Windermere high schools and Windermere Prep. They go on stage as a family and share their story.
“He might be 8 years old, but he’s the size of a 6-year-old,” Alan Murillo said. “He just hasn’t reached that growth spurt yet. His speech is delayed. He is speaking in full sentences. But as compared to his peers, there’s a difference. … But that doesn’t stop him from trying to get his point across. Even if he’s frustrated, he won’t give up.
“One of his favorite quotes is to say, ‘I was a little tiny baby in my mommy’s tummy,’” he said.
The dances are fun for Myles because he gets to fulfill his dream of being a police officer by “arresting” people and taking them to the makeshift jail until someone bails them out.
Alan Murillo remains impressed with his son’s fortitude and outgoing nature.
“We’ve been with Children’s Miracle Network for little over five years, and one of the things with being involved with this program is we’ve been around a lot of parents with different medical needs,” he said. “Myles has always been an outgoing child. I like to call him the mayor — wherever he goes, he doesn’t know a stranger. He’s not afraid to make new friends. We will be in the grocery store and he sees someone who’s sad and he will say, ‘Hi, I’m Myles.’ If he hears a child crying, he wants Mom or Dad to walk down the hall and find out what’s wrong.
“It’s one of the most amazing things about him – that ability,” he said.