While Traci Smith was pregnant with her son, Darius, she didn’t know he had any health problems. To her and her husband’s surprise, they found out that Darius needed immediate colorectal surgery when he was born. During the surgery, Darius’ parents learned that he had malrotation (twisting) of the intestines and needed a colostomy (a bag that collects waste on the outside of the body).
To complicate things further, Darius was born with VACTERL, a complex condition that affects multiple parts of the body. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula, renal anomalies and limb abnormalities. Due to this condition, he was born with an anorectal malformation in which his rectum and anus did not develop properly during pregnancy.
Darius’ doctor highly recommended that Alberto Peña, MD, a world-renowned surgeon in the treatment of anorectal malformations, perform the surgery Darius needed. Traci knew they had to find a way to see Dr. Peña. Six months later, in May 2008, Dr. Peña and Andrea Bischoff, MD, performed the "Peña Pull-Through Procedure" to repair the colorectal malformation. They performed several other surgeries after that, including surgery to repair a colon rupture, which saved Darius’ life.
“They have been by his side from day one,” said Traci, as she described the care Darius received from Dr. Peña and Dr. Bischoff over the years. “They are concerned about the person—the patient’s quality of life. They are there for their patients over the long haul.”
Darius finds a new medical home
In 2016, Darius and his family came to Children’s Hospital Colorado from New Jersey to see Drs. Peña and Bischoff at the International Center for Colorectal and Urogenital Care for a follow-up appointment. “We walked into the hospital and stopped in our tracks,” said Traci as she described her first visit to Children’s Colorado. Traci said that she and Darius looked at each other and knew this would be a good place.
Because Darius has a complex medical condition that requires multidisciplinary care, he needed to follow other specialists as well. So, his parents decided to transition all his care to Children’s Colorado. Darius now sees other specialists, such as Glenn Furuta, MD, and Duncan Wilcox, MD, who help to manage his complex condition.
“We feel so at ease with Children’s Colorado,” said Traci. Although they often felt nervous walking into a new medical facility, they didn’t feel that way when they got here. “People are kind, smiling and always willing to help you.”
Darius has another surgery scheduled for December 2017 that will allow him to become more independent. He’ll have two procedures: the Malone procedure, which will enable Darius to give himself enemas and a Mitrofanoff procedure, which will allow Darius to empty his bladder on his own.
A resilient 10-year-old who is enjoying life
Darius has had a tough 10 years. His life has been very limited at times due to numerous surgeries and multiple health issues. Despite Darius’ health challenges, though, Traci says that he has flourished into an amazing 10-year-old kid.
“He is so happy and has such a love for life. He is very social. He’ll walk up to any kid and talk to them. In fact, he’s very happy to talk to them about his condition if they ask.”
Darius loves soccer, and gets to have his dad, Mehdi, coach his team. Darius also recently learned to swim. Although this may be a normal milestone for many children, it’s meant so much more to Traci and her husband because Darius had not been able to get in the pool for various health reasons. When he recently got the green light, he immediately wanted to learn to swim. “He’s been like a little fish for the past five days,” Traci said emotionally.
The road ahead
Darius’ family is willing and prepared to travel to Colorado from New Jersey to get the specialized care that Darius needs. “It’s like starting a new chapter at Children’s,” said Traci.
As Traci looks forward to the care that Darius will receive at Children’s Colorado, she is excited about the Pediatric to Adult Transition Program. When Darius becomes an adult, this program will allow him to transition into adult care with doctors who will be familiar with his medical conditions. This gives Traci peace of mind.
“There has been an outpouring of love from the hospital. It literally opened our eyes to a new world.”