Sunday, June 12, 2011
I Can Do So Many Things plus Des News & KSL article
ALPINE — He was considered a miracle the day he was born, and a year later, little Aaron Peterson is still beating the odds.
To hear his mother say it, the fragile, 1-year-old milestone baby is "a little piece of heaven."
And in the midst of all the buzzing and humming sounds coming from various medical equipment flowing in and out of his 14-pound body, Aaron seems to gaze past all his worldly cares like he knows his life won't be long, but he'll take whatever he can get.
Aaron was the ninth child born to Rebekah and William Peterson and up until the first ultrasound, everything seemed to be going just as expected — just as it had with the previous eight healthy babies born into the family. But doctors told them that baby No. 9 would be born with Trisomy 18, a condition caused by a chromosomal defect making him "incompatible with life," if he was born at all.
"It felt like the whole world stopped," Rebekah said Monday. "You don't have a child to bury it."
From that point on, the expectant mother kept her composure in public but wept silently for a child she knew would have serious challenges in life. There was at least one instance when she wished things were different, that her "special spirit" was anything but special. But Rebekah was somehow able to turn her anxiety into an intense yearning for information, a desire to help her baby survive.
Information became the fuel that kept her going, as she met all kinds of people on the Internet who had been through some of the same circumstances and as she learned more about what is also called Edwards Syndrome, which affects 1 in 3,000 babies born every year.
Knowledge not only helps the family cope with the experience, but has earned Rebekah the respect of many doctors and nurses who have gotten to know Aaron's determined will to live.
Most doctors, though not Rebekah's, pressure parents of Trisomy 18 babies to abort, as they feel the child will likely not survive. Of those who chose to try to carry the babies to term, statistics reveal that only 50 percent will hold a live baby. Of those babies born alive, half will die in the first two weeks, usually in the first day or two. And only 5 to 10 percent live to their first birthday.
At his first birthday celebration, held Monday, more than 60 helium balloons were released into the air, symbolizing Aaron's gift to all the babies who have previously died with his condition, his mother said. The many caretakers and emergency personnel, as well as family and friends were invited to celebrate with Aaron and his family. They all hope that by raising awareness of trisomy — or when extra chromosomes cause physical anomalies within the human body — will help create more advocates for it.
Fortunately, the family has been able to care for Aaron at their home. The immense medical costs are borne by a medical insurance waiver for technology dependent children, those who rely on machines to live and breathe.
"I really hate roller coasters. I'll rarely ever even go on them … and sometimes this is a roller coaster," Rebekah said.
Throughout the recent winter months, Aaron landed himself in the hospital every two to three weeks, and it has now been a magical 10 weeks since Aaron was discharged from his latest hospital stay, twice his former record. This time, it was a scary bout with pneumonia, as he struggles with processing oxygen in his lungs.
Every two weeks, Rebekah is tasked with changing and replacing the little tyke's tracheotomy tube and she has all the equipment she needs to resuscitate Aaron if she ever needs to. She keeps an eye on the oxygen tubes, to be sure they don't tangle or get kinked, and changes his feeding bag whenever it empties.
He'll likely stay at this level for the rest of his life.
It's all quite different than the Sippy cups, extra pacifiers and rash creams typically found in the bottom of most diaper bags, but the bells and beeps from the machines that surround Aaron's room have become as normal as the coos and mumblings any child would make.
"The vast majority of people don't know what it is like to have a fragile child that could go away at any time," Rebekah said. While there is a folder containing the names of all the local funeral homes sitting in the family's filing cabinet, the Peterson's have yet to think that seriously about the end of their last child's life.
"We'll keep him as long as he wants to stay around," Aaron's 41-year-old mother said. With all the missed work days piling up, they don't yet have the money to purchase the burial plot they know they'll need someday, not to mention the cost of wanting to put their own two spots nearby.
"It doesn't matter how long I get, we will bury him before we are ready to," Rebekah said.
Although trying at times, through Aaron the family has learned to live each moment to its fullest, that a lot of life's trivialities don't really matter in the grand scheme of things, that smiling is one of our most important abilities and is often taken so much for granted.
His vision is perfect, he's starting to track movements and is learning to roll over. He'll most likely never walk and can't hear well, but he reacts to the sense of comfort he feels when he's curled up on his dad's shoulder. He smiles often and loves to be outside.
"When he was born, we weren't going to do anything heroic," Rebekah said. Since then, Aaron has proven to them who the hero really is.
© 2011 Deseret News Publishing Company | All rights reserved