Amanda and Chris Rawn were anxiously awaiting the arrival of their first child in 2012 - a son that they were expecting to meet sometime around the first of June. Amanda was doing everything right - going to the doctor regularly, taking prenatal vitamins and exercising.
However, on the morning of Feb. 11, 2012, the Rawn’s life took an unexpected turn when Amanda began experiencing pain. She was only 24 weeks through her pregnancy, so she headed straight to St. Agnes Medical Center. Doctors informed her that she was in labor and that, unfortunately, there was nothing they could do to stop it. Just a few hours later, Maddox Alan Rawn was born. He was 12.5 inches long and weighed 1 lb., 12 oz.
“We’re not really sure why he was early, there was no definitive reason and we had good prenatal care,” Amanda said.
The Rawns were barely able to see their son before he was taken to Valley Children’s Hospital’s Neonatal Intensive Care Unit, and he was only given a 10% chance of survival. Over the next five months Maddox fought for life, overcoming one hurdle after the other. He underwent nine surgeries and suffered numerous health problems - three strokes, bleeding on his brain, bleeding out on the operating table, bowel perforation, blood infections, MRSA (staff infection), and Meningitis, among other ailments.
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“It was horrible,” Amanda said. “I would never wish it upon anyone, watching your child suffer and fight to live. Every day we didn’t know if he’d make it another day, and for five months we were in limbo if he’d even make it home.”
On July 12, after 153 days in the NICU, Maddox did make it home. He was five months old and weighed 7 lbs.
“We were told he would die three times, and he’s still here today,” Amanda said. “We love (Valley) Children’s Hospital and are still in touch with the nurses and can’t say enough.”
Even though Maddox is home, he still faces problems every day.
“He’s medically fragile and has multiple medical issues due to his prematurity,” Amanda said. “He’s legally blind and has cerebral palsy and a plethora of diagnosis.”
Maddox also has limited mobility. He can roll but is unable to walk or use his right arm. He does have good movement in his left arm, and he can use his legs a little.
For the most part, though, Maddox has been healthy and has only had two hospitalizations since his initial release from the hospital. Because his immune system is compromised, the Rawns take extra precautions to care for his health such as staying home during the cold and flu season.
“We keep him very sheltered and protect him,” Amanda said. “We have a lot of doctors to keep him safe and healthy and thriving.”
And thrive he does. Amanda says Maddox is always happy, especially when there’s music playing.
“I put on iHeart radio and he bobs his head and rocks out to the beat,” Amanda said, laughing. “He gets all serious.
He also loves animals and has two best friends - a Belgian Malamut named Axel and a Doberman mix named Tori.
“They just love him, and they lick his feet,” Amanda said. “He just loves to play and has such a good personality and is very silly. He can only see light and shadows, so auditorily he thinks things are funny. He loves animal noises.”
Amanda, who was working on obtaining her license as a Marriage & Family Therapist, is devoting her life to Maddox as a stay-at-home mom.
“I try to do the best that I can, because he deserves the best,” Amanda said. “We’re just so grateful for him. He’s amazing. I could brag about him all day.”
Amanda said it was her and Chris’ faith in God, their friends, and their family that got them through all the rough times.
“I think we’ve changed a lot for the better,” Amanda said. “You can’t go through something like that and not have it change you.”
Amanda is now working with the March of Dimes, a national organization that funds research to find causes of premature birth and also helps support families with premature babies.
“Thanks to families like the Rawns, who are willing to share their story, March of Dimes is able to raise awareness in our community about our mission to improve the health of babies by preventing premature birth, birth defects, and infant mortality,” said Stephanie Regevig, development manager for the March of Dimes, Central Valley Division.
Last year the Rawns were the March of Dimes ambassadors for the annual Fresno event, helping raise awareness in the Valley.
“It’s important to know that it can happen to you,” Amanda said. “Prematurity has changed our life, and I want to spread awareness. They don’t known a lot about prematurity, like Maddox who is a micro-preemie. That made me want to become more involved in the March of Dimes. Children and adult disabilities have become my passion, and anything I can do to bring awareness, I will do.”
Amanda, Chris, and Maddox have raised $5-6,000 the last two years and plan to continue.
“We love Maddox with all our heart and we support any organization that helps kids and families get through a difficult situation like premature birth,” Chris said.
This year’s March of Dimes event, the March for Babies, will be held Saturday, April 11 at Woodwark Park, 7775 Friant Road. Registration is at 8 a.m. The event will begin at 9 a.m.
The public is invited to participate in the event to help raise money to conduct research about premature births like Maddox’s.
For more information about the March of Dimes, visit www.marchofdimes.org/index.aspx
Event Details: http://www.marchofdimes.org/california/events/10306_3136353533.html