Jarrett Dean Butcher
 |
Summary: Jarrett Dean Butcher, born January 28, 1997 in Royal Oak, Michigan (outside Detroit). Conditions: giant omphalocele, scoliosis, tethered spinal cord, single hydronephrotic kidney, club foot.
Jarrett was born on January 28, 1997 with several birth defects. Most notably was a giant omphalocele, which is a failure of the abdominal wall to close during early fetal development, allowing the liver, intestines, stomach, and spleen to grow in a sac outside the body. We learned of his condition at the first ultrasound at 15 weeks gestation. Jarrett also has severe scoliosis due to several wedge-shaped vertebrae, a single kidney, a tethered spinal cord (L4-L5), and a left club foot. Two hours after he was born, surgery was done to put his liver back into his abdomen and attach a "silo" to squeeze the bowel back in. At eight days old, the silo was removed and they got primary skin closure of the abdominal wall. He remained on the ventilator for about two weeks and was weaned to nasal cannula with a low oxygen flow. We took him home after only six weeks in the NICU.
All was well until he developed a cold, which quickly turned into pneumonia. After fighting pneumonias and collapsed lungs all summer and most of autumn with several endotracheal intubations, we decided to give Jarrett the trach. He was so weak from months of sedation and restraints, but he immediately started to catch up after he got the trach. It was a hard decision to give him such a seemingly "permanent" procedure, but now we wish we would have done it sooner.
Jarrett is currently vent dependent, but is growing well and catching up developmentally - he sits by himself and can vocalize very well. Jarrett uses a LP-10 home vent with a Portex trach.
We would be very interested to hear from other families with ventilator-dependent infants or a similar constellation of problems.
- Contact us at butchmeister@msn.com
Laurean and Tom Butcher
