Featured cherub of the week is CDH survivor Niall Ashburner, son of Sherri and Jim Ashburner. Sherri is CDH International’s Connecticut Ambassador. Sherri had this to share about her son:
“This is a story of firsts. We first learned of the Congenital Diaphragmatic Hernia birth defect during my second trimester ultrasound in the spring of 1999. The head of the maternal/fetal unit had recently attended his first conference on CDH held at Children’s Hospital of Philadelphia(CHOP) and actually handed us his manila envelope of information, which included a brochure from CHERUBS. I will always remember reading those papers and the way my tears fell when I got to the part about survival rates.
After being given a 0-20% chance of survival (zero because none had survived with as severe a case as his yet, and 20 because hey, someone’s gotta be first!) Niall entered this world crying silently. With a quick look at me he was whisked away to the team of doctors and nurses from CHOP’s NICU who were waiting just outside the delivery room door.
Niall was a resident of the NICU for six months before he was released home. He left the hospital with a trach, a nissen, a g-tube, and 24-hour in-home nursing care. He took all this in stride, like a true CDH warrior. He even learned to walk by disconnecting himself from his vent!
Niall’s trach was removed when he turned three, and the g-tube soon after, although he ate only pureed foods until he met up with the fabulous team at the Penn State/Hershey Feeding Clinic to learn how to eat solids when he turned five.
Niall has never had an intestinal blockage nor has he reherniated. He has, however, had his gall bladder removed in second grade(due to gallstones from ECMO), battled pneumonia several times, spinal surgery for scoliosis, and has 40% lung capacity.
In junior year of high school, Niall’s pulmonologist sent him to a cardiologist to be tested for pulmonary hypertension. He didn’t have that, but it was discovered he did have a congenital heart defect—a small hole. This was not found earlier due to the fact that Niall’s heart is in the middle of his chest and rotated back a bit. An easy fix with a small round of titanium (just like his rods and screws for his spine!) and an overnight stay.
Niall is now in college, pursuing his love of film. He is registered with disability services, due to his chronic lung disease diagnosis, which means air-conditioned dorms and shorter walks between classes in cold weather. He still sees the same pulmonologist who has helped him countless times through the years and, in perfect harmony, she also has a son, the same age as Niall, at the same university. Serendipity.”
