You would never know it if you met him today, but 4-year-old Alec spent the first six months of his life in a hospital, fighting to survive. Born with a serious gastrointestinal disorder, his condition was so precarious that for three straight months, his parents weren’t even allowed to hold their son.
Yet with the help of Children’s Hospital Colorado, Alec has not only survived but thrived. Now a happy, growing little boy, Alec has triumphed over more obstacles in four years than most people overcome in a lifetime.
An uphill battle
Alec and his twin brother Jake were born about 8 weeks premature. They were small – about 3.5 pounds each – but appeared to be otherwise healthy. After ten days in the Neonatal Intensive Care Unit at another local hospital, the family was getting ready to take their boys home when they got a call that something was wrong with Alec. He had vomited a foul substance and doctors were concerned.
Alec was soon diagnosed necrotizing enterocolitis, a serious type of Short Bowel Syndrome (SBS) that primarily affects preemies with immature organs. The disease damages intestines, in some cases creating intestinal holes, which poses major infection risks.
Alec was a severe case. He continued to deteriorate, and his parents watched helplessly as his small body became swollen with infection. He was soon airlifted via Flight for Life to Children’s Colorado, where the region’s top pediatric gastroenterologists could provide little Alec with the life-saving treatment he required.
When he was just 18 days old, Alec had surgery to remove the infected portions of his intestine. The doctors later shared that they thought they didn’t think Alec would make it through surgery. They had to remove more than three-fourths of his intestines before they could find any healthy tissue. It was a miracle that he survived.
“Without Children’s Colorado, we could have been just one infection away,” said Alec’s father, Joe. “The outcome could have been very different.”
For months, the family commuted from their home in Pueblo to Children’s Colorado where Alec remained as an inpatient. Having a baby in a hospital more than 100 miles away from home wasn’t easy, but Joe said that the family-centered care at Children’s Colorado helped his family make it through.
“They truly do all they can to make kids well but also to support the family,” said Joe.
Home at last
When he was six months old, Alec was finally stable enough to come home. He was still unable to digest regular food, so his parents had to learn how to feed him using a G-tube inserted through his abdomen and IV fluids. It was a difficult journey, but Alec continued to heal.
Four years later, Alec still receives care at Children’s Colorado. Whether he’s there for a follow-up appointment or to have an infection treated, Alec’s parents say that the staff always makes their son feel special. They are extremely grateful for the care that their son receives and how far he’s come as a result.
“People who have not gone through something like this don’t know about all that Children’s Colorado does for its families,” said Larissa. “With the snap of a finger it could all have been different. We could have been going home with just one twin.”