Feeding for Life
Feed and grow. If babies should do any two things, these are it, the primal aspects of being. Happy babies are full babies; healthy babies are growing babies.
But there are rare babies who cannot feed or gain weight. Some of them may have short bowel syndrome (SBS), the most common form of intestinal failure, encompassing any case where surgeons remove portions of a child's infected intestine so that someday his intestines will function with relative normality. The short-term - and sometimes long-term - consequence of this necessary removal is the inability of the intestines to absorb food.
The Miracle Baby
Alec pictured with his
Alec Gonzalez turned one on February 15, 2011, his birthday near the first anniversary of his SBS diagnosis. He was born one month early at Memorial Hospital in Colorado Springs and at 10 days old, his doctor diagnosed him with necrotizing entrocolitis (NEC).
Alec then had emergency surgery at Memorial Hospital that removed a significant portion of his intestine. Afterward, Alec could not digest or absorb food normally; he required total parenteral nutrition (TPN), a formula of nutrients, fluid, and electrolytes delivered through intravenous catheter. This ensured that while Alec could not rely on his intestines for nutrition, he could still grow.
Children's Colorado's current SBS treatment aims to support patients through a multi-phase plan while their bowels grow and adapt. The first phase entails 24/7 dependence on TPN. Then, over months or years, if their bowels regain adequate function, patients taper off TPN and gradually transition to feedings via gastric feeding tube (g-tube) and/or by mouth.
Alec transferred to Children's Colorado in June and is currently in the second phase of treatment, slowing his TPN and increasing G-tube formula. He is growing and even spoon-feeding with dietician-approved baby food. He likes sweet potatoes, hates green beans.
"We're amazed he's pulled through this far," said Alec's mom, Larissa Gonzales. "A year ago, we did not think we'd be sitting here. He's our miracle baby."
Progress has not been consistent, though.
"Alec has had his share of ups and downs," said Dr. Jason Soden, a pediatric gastroenterologist at Children's Hospital Colorado. "He takes one step forward, then two steps forward, then one step back. It requires a lot of follow-up and patience."
Despite Alec's present challenges, he is happy, itching to crawl and giggling at nothing in particular.
At just a year old, Alec has surpassed his parents' expectations for survival, but questions undoubtedly remain. Will Alec grow well? How long on the TPN and G-tube? Who will Alec become?
Hope from Children's Past
Logan with Alec in 2011.
Within 24 hours of Logan Martin's birth in 1986, helicopters had transferred him from Salida to the Children's Hospital Colorado, where surgeons removed 90 percent of his small intestine. During the emergency surgery, doctors found a "twist" in his small intestine, as Logan called it, and they diagnosed him with SBS.
Logan went on TPN immediately, went back to Salida and spent years in home treatment (his family later moved to Canon City). Logan made slow and steady progress, graduating from full-time TPN to a G-tube. Although he could not absorb all this food - and probably never will - he could enjoy the act of eating without prolonged discomfort.
Late middle and early high school brought the worst of SBS. Logan acquired infections, "reliably every three to four months," that included stays in the intensive care unit. After a year and a half, his physician, Dr. Judith Sondheimer, the former head of Pediatric Gastroenterology at Children's, prescribed a new formula. Suddenly, Logan felt better.
"For the first time in my life, I began to gain weight on my own. And then, things got better and better and better." Today, Logan is "completely self-sustained," with just two nightly feedings through his G-tube.
Burdened with a disease of limitations - there is no contact sports, swimming or roughhousing with SBS - Logan defied expectations. In high school, he played tennis and excelled on the debate team. He earned the competitive Boettcher Scholarship to the University of Denver, and Logan graduated in May 2011 at the top of his class at the University of Colorado Law School. This fall, he is working as a judicial clerk for the 10th Circuit Court of Appeals in Salt Lake City.
"Now I can travel and go camping. I can do just about anything I like," he said. Last spring, Logan ran his first half marathon.
When asked about advice to Alec and his family, he said the following: "Make it your own, but don't let it define you. Don't feel like you're limited.
"I credit my parents for not treating me differently. They didn't let this be the defining feature of my life. They always asked, 'how do you want to live your life?' I hope that can be the case for Alec."
The Children's Hospital Colorado is the only dedicated intestinal rehabilitation program in the state. Dr. Soden and his team see patients from all over the mountain west, including Montana, Wyoming and New Mexico.