Preemie’s health after triple transplant feels like ‘a Christmas miracle’
By CATHY DYSON
Jaxon Brown’s mother says he’s “been through hell” during his 18 months on earth, but you’d never know it by the smile on his pudgy face.
He survived an extremely premature birth, then “breezed through” triple-transplant surgery three months ago, said his pediatrician, Amy Cochran of Fredericksburg.
“As much as he’s been through, he’s just a happy kid,” the doctor said. “Every time he comes into the office, he’s smiling like crazy and looking all around, and that’s not typical of chronically ill kids.”
Jaxon’s mother, Danielle Brown, hopes her son’s days of chronic illness are behind him. She’s told herself her baby would make it, from the time she was 12 weeks pregnant and bled so much, a miscarriage seemed imminent.
When Jaxon entered the world more than 16 weeks early—weighing only a pound and a half—she and Jaxon’s father, Josh Brown, learned their baby might have brain damage, be blind or deaf or suffer from various mental and physical handicaps.
So far, Jaxon has not shown any signs of permanent damage, his pediatrician said. He’s got developmental delays, as most preemies do, but “as he’s getting better, we can start getting him therapy,” Cochran said.
Others across the region—and world—who’ve chronicled the progress of the Fredericksburg baby on Facebook have called him a “miracle baby.”
Danielle believes the description is even more appropriate now that a normal life seems within reach.
“There is nothing wrong with him,” she said. “To think about the things that could have happened it truly is a Christmas miracle.”
All that remains from the maze of tiny tubes and support systems that once kept Jaxon alive are what Danielle calls two attachments: a feeding tube into his stomach and a bag that collects his waste.
When Jaxon is able to eat on his own—and he’s already sampled baby food—the tube can be removed. His ileostomy, an opening in the belly through which waste is routed, also will be closed eventually.
The bag that holds his waste will be removed when his intestines can work on their own. Or, as Danielle explained, when “he can poop out of his butt.”
“Ewww, that’s gross,” said Jaxon’s 4-year-old sister, Cloe, who was listening to the conversation.
Before the transplant, Danielle worried that Cloe would have to stay with relatives so she wouldn’t share any germs she gets at preschool with Jaxon, whose immune system has been weakened. But Danielle says Cloe has been drilled on regular hand-washing and not getting in Jaxon’s face, so the siblings can stay together.
Danielle hopes Jaxon’s remaining surgeries will be scheduled within a year. She’s eager to be rid of the lines and tubes that connect him to his past.
“I can’t wait for these to go so he can be potty-trained,” she said.
Since the transplant surgery, Jaxon has had temporary setbacks with dehydration and respiratory issues, high-blood pressure and problems getting his medicine regulated. He will take medicine for the rest of his life to keep his body from rejecting the liver, bowel and pancreas that were transplanted inside him in September. He’ll also need a colonoscopy every year to make sure things are working properly.
“He’ll be the healthiest kid ever,” his mother said.
That’s hardly the prognosis the Browns got before Jaxon came into the world.
‘HE’S MEETING MILESTONES’
When Danielle started bleeding, first at 12 weeks and again at 16 weeks into her pregnancy, she was told she’d probably miscarry.
When Jaxon hung on, then was born on June 2, 2011, more than 16 weeks early, she was told he had a 40-percent chance of survival, at best.
Even among premature babies—those born before the normal full term of 40 weeks—Jaxon was the smallest of the small.
Only 6 percent arrive at 28 weeks or earlier, as he did, according to the March of Dimes.
“He literally looked like an alien,” his mother said, “I couldn’t even hold him. His skin wasn’t formed yet.”
Now, at 18 months of age, Jaxon is a far cry from that frail baby. He weighs 22 pounds, has nine teeth and a tuft of brown hair that often falls into the shape of a Mohawk.
He doesn’t like to be on his belly—probably because of the many bags and attachments—and his legs aren’t as strong as those of other babies his age. His mother assumes that’s because he’s spent so much time in hospital beds.
Like other premature babies, he’s developed at a delayed rate because of his early birth. For instance, a baby born two months early typically crawls about two months later than others his age.
It takes about three years for premature babies to catch up in growth and development, Cochran said.
“Jaxon isn’t showing us any worrisome signs as far as development,” Cochran said. “He’s meeting milestones on his own little schedule.”
‘A NORMAL LITTLE GUY’
Danielle can’t believe how much Jaxon changed as soon as new organs entered his body. His liver, bowel and pancreas had been damaged because they didn’t have time to develop properly, as well as from infections he suffered and measures taken to save his life.
Early on, doctors put in lines and tubes to get nutrition into Jaxon, who never had the strength to suck a bottle, and to reroute his digestive system. They knew the measures weren’t permanent and that he’d eventually need a transplant.
They told the Browns that babies with his condition pass away around 18 months.
Jaxon was 15 months old in September, when his damaged liver started shutting down. His skin and eyes turned yellow, he was listless and he vomited blood.
“I took it day by day and was glad for every day that I had him,” his mother said.
When she got the call on Sept. 19 that organs were available, the Browns rushed him to MedStar Georgetown Transplant Institute, part of MedStar Georgetown University Hospital in Washington.
The next day, Jaxon was in pre-op, surgery and recovery for more than 12 hours. His parents noticed a difference the moment they saw him after surgery. His color had improved, and his strength quickly began to rebound.
The Browns were told Jaxon might be at the hospital for up to three months, depending on how quickly he recovered. He was home in 3 weeks.
“He has more energy than anything I’ve ever seen,” Danielle said.
Her older sister, Kim Brown, also has been amazed by the transformation—not just since Jaxon’s birth when he “was this tiny little thing”—but also since his transplant.
“He reaches up and he blows kisses when you walk in the door, he’s just so much fun,” she said. “It’s just amazing, to see how much struggle he had, and to see that he has completely changed.
“He’s just a normal little guy right now,” she said.
‘DOING REALLY WELL’
Jaxon is right on track with what’s expected after a transplant, said Melika Bessaoud, a nurse practitioner at Georgetown who’s coordinated his case and seen him weekly since the September surgery.
“He’s actually doing really really well,” she said. “And he is just adorable. He is getting fatter and fatter at this point, which is great.”
Bessaoud said the transplant has given him “every chance of having a normal life.”
As Danielle sat on the floor in the living room floor of their Heritage Park apartment, Jaxon rolled into her lap, then beyond it, to reach a bright toy with blinking lights. He babbled a bit, stuck everything within reach in his mouth—because he’s teething—and sat at attention to watch SpongeBob SquarePants on TV.
Danielle always hoped Jaxon would do as well as he’s done and is thrilled to see it actually happen.
“As long as he doesn’t reject the organs, he’s good for life,” she said.
Jaxon Brown’s parents, Danielle and Josh Brown, have been separated since February. Danielle’s boyfriend, Mike Provilus, lives with Danielle and her children, Cloe, 4, and Jaxon, 18 months.
Danielle is pregnant, and she and Mike are having a boy. She’s due June 1, the day before Jaxon’s second birthday. One relative questioned why Danielle would get pregnant again when she has a disabled son. Danielle replied: “I don’t have a disabled son. Yes, he’s been through hell, and he’s still got some attachments [a feeding tube and waste bag] but he’s perfectly fine now.”
She acknowledged it wasn’t “the perfect time” to get pregnant. “But when is it ever?” she asked.
Updates on Jaxon Brown’s condition are posted regularly on his page: facebook.com/groups/141862979228400/
Cathy Dyson: 540/374-5425