Davis is 13 year old boy who was born prematurely at 33 weeks gestation with an undiagnosed congenital heart defect called truncus arteriosus. His heart defect was caused by a genetic defect called DiGeorge Syndrome or 22q11. In addition to the heart defect, the DiGeorge Syndrome causes immune system insufficiency, mostly on this T-Cells and B-Cells. In addition to the truncus, he has several vasc
ular abnormalities which have required additional heart surgeries and has frequent atrial ectopy. Davis developed Bronchopulmonary Dysplasia, required a tracheostomy, and became ventilator dependent. He also has lymphocytic colitis. He has complete sensorineural hearing loss (complete deafness) and is a bilateral cochlear implant recipient. He has Horner Syndrome (permanent nerve damage to the left side of his face) and wears glasses for farsightedness. He also has hypothyroidism, reflux, heavy developmental delay, and growth issues. He has a vestibular disorder that inhibits his ability to balance. He still has tremendous sleep difficulties. Statistically, Davis is impressive by anyone's standards. He spent the first 15 months of his life in the intensive care unit in 5 different hospitals in 4 different cities. Once he finally came home at 15 months old, he required 24 hour nursing care, was on a whopping 27 daily medications, and developmentally was a medically fragile newborn. We have taken 10 medical life flights out of state overall. We have spent the majority of our hospital time at Children's Hospital Boston, Our Lady of the Lake Children's Hospital, and Woman's Hospital Baton Rouge. We have recently traveled to New York Presbyterian Morgan Stanley Children's Hospital in New York for his most recent heart surgery. We also see specialists at Children's Hospital New Orleans as well as Ochsner Medical Center in New Orleans. He has had 3 open heart surgeries and countless other major surgeries/minor procedures. He requires nursing care at home and Homebound instruction for school. We are currently followed by 12 specialists that require regular appointments. Despite all those complications, he has made some unbelievable progress. As of September 2014 he is decannulated (no more trach/vent!). He can walk with little assistance, has no speech but is making strides with other forms of communication, and shows bursts of intelligence on a daily basis. Cardiac wise, he's stable with a 19mm magna valve serving as his pulmonary artery. The next open heart surgery is tentatively scheduled for 12-14 years old, maybe more. His immune system is stable and his lymphocytes are checked every 6 months to make sure we do not see a drop off in function (which sometimes happens with DiGeorge Syndrome.). Thanks for joining us!
