Success Stories
Becky Hufty writes about her son.......
Jack was born 10 weeks premature on May 4, 2007 due to TEF (tracheoesophageal fistula). Because his upper esophagus ended in a pouch and his lower esophagus was attached to his trachea he was not able to swallow amniotic fluid which put me into labor that the doctors were not able to stop. He weighed 3 lb 6 oz. Within a few hours of his birth, Jack was having his first surgery at Riley. During this surgery they repaired a bowel perforation, placed a g-tube (feeding tube in stomach), and attempted to connect his esophagus, however the gap was too long so the surgeon attached the lower esophagus to his spine to try to stretch it with hopes of connecting it in a few months. When Jack was a week old his upper esophagus pouch tore causing an air leak which collapsed his right lung. He had emergency surgery for an esophagostomy (esophagus routed out the side of his neck). This made the connection surgery impossible since there was no longer enough esophagus to make a connection. Jack spent his first 72 days in the NICU at Riley.
He came home on oxygen, apnea monitor, g-tube feedings, and with the esophagostomy. When he was 7 months old he was finally big enough for his esophageal reconstruction surgery. The surgeon cut the upper arc of Jack's stomach, then formed a tube which became Jack's esophagus. He closed the esophagostomy and attached the little remaining esophagus to the stomach tube. Jack has chronic lung disease from being on the vent so long when he was first born, so it was very difficult for him to come off the vent after this surgery. He spent 37 days in Riley after this surgery and again came home on oxygen. He came off oxygen completely when he was 16 months old and is slowly learning to eat by mouth. Though he is catching up in most developmental areas his therapists were concerned that he may have some neurological problems, so his developmental pediatrician at Riley ordered an MRI when Jack was 20 months old. The MRI showed several congenital anomalies of his brain and spine.
Jack had surgery again in June 2009 to release his tethered spinal cord. He will likely have more surgeries in the future for either a shunt for his hydrocephalus (spinal fluid on the brain) and/or decompression of his chiari malformation. A chiari malformation is where the skull is not formed correctly and allows part of the cerebellum to slide into the spinal canal. Jack has a comprimised immune system which also leads to stays at Riley. From mid-January 2009 to mid-March 2009 Jack was admitted four different times for various illnesses. He continues to have several doctor appointments and tests run at the Riley Outpatient Center. Riley is Jack's second home.
Jack was born 10 weeks premature on May 4, 2007 due to TEF (tracheoesophageal fistula). Because his upper esophagus ended in a pouch and his lower esophagus was attached to his trachea he was not able to swallow amniotic fluid which put me into labor that the doctors were not able to stop. He weighed 3 lb 6 oz. Within a few hours of his birth, Jack was having his first surgery at Riley. During this surgery they repaired a bowel perforation, placed a g-tube (feeding tube in stomach), and attempted to connect his esophagus, however the gap was too long so the surgeon attached the lower esophagus to his spine to try to stretch it with hopes of connecting it in a few months. When Jack was a week old his upper esophagus pouch tore causing an air leak which collapsed his right lung. He had emergency surgery for an esophagostomy (esophagus routed out the side of his neck). This made the connection surgery impossible since there was no longer enough esophagus to make a connection. Jack spent his first 72 days in the NICU at Riley.
He came home on oxygen, apnea monitor, g-tube feedings, and with the esophagostomy. When he was 7 months old he was finally big enough for his esophageal reconstruction surgery. The surgeon cut the upper arc of Jack's stomach, then formed a tube which became Jack's esophagus. He closed the esophagostomy and attached the little remaining esophagus to the stomach tube. Jack has chronic lung disease from being on the vent so long when he was first born, so it was very difficult for him to come off the vent after this surgery. He spent 37 days in Riley after this surgery and again came home on oxygen. He came off oxygen completely when he was 16 months old and is slowly learning to eat by mouth. Though he is catching up in most developmental areas his therapists were concerned that he may have some neurological problems, so his developmental pediatrician at Riley ordered an MRI when Jack was 20 months old. The MRI showed several congenital anomalies of his brain and spine.
Jack had surgery again in June 2009 to release his tethered spinal cord. He will likely have more surgeries in the future for either a shunt for his hydrocephalus (spinal fluid on the brain) and/or decompression of his chiari malformation. A chiari malformation is where the skull is not formed correctly and allows part of the cerebellum to slide into the spinal canal. Jack has a comprimised immune system which also leads to stays at Riley. From mid-January 2009 to mid-March 2009 Jack was admitted four different times for various illnesses. He continues to have several doctor appointments and tests run at the Riley Outpatient Center. Riley is Jack's second home.
