After 9 weeks of hospital bed rest, William Nathan Harris was born via C-Section on May 13, 2002 at 35 weeks gestation. Within minutes after birth he was rushed off to the NICU, and intubated within hours. Nate was only 5 weeks early, weighed 6 lbs 7 ozs, and was 19 ½ inches long. He was not considered a preemie, but Nates lungs were very underdeveloped. He was unable to breathe on his own his first 14 days of life. After he was taken off the ventilator he still remained on 4% nasal cannula oxygen because his respiratory and heart rates were three times the normal rate. He was fed via NG tube. For the next 3 weeks Nate was watched very closely, and all vitals were checked every 5 minutes. He had 2 episodes of sleep apnea during his NICU stay. Finally on June 8th we were able to take him home. Nate was nearly a month old. The happiness was short lived.
At 6 weeks of age Nate began projectile vomiting. He was diagnosed with Severe GERD and started reflux medications at that time. In July of 2002 Nate had a brief hospital admission for wheezing, and low O2 Sats. From July to September he did great, but still continued to reflux despite the meds and thickened feeds. In September of 2002, Nate was a very sick little boy. He was admitted into the hospital for what was thought to be Pneumonia, according to the chest x-ray. After 10 days of IV antibiotics Nate was still on steroids and oxygen. And was still very sick. Between September of 2002 and April of 2003 Nate had 19-hospital admissions for Respiratory Distress Syndrome. Nate began seeing a Pulmonologist in October of 2002. We saw him once a month for a physical, chest x-ray, and chest Cat scans. Nate had his first Bronchoscopy at 8 months of age, and first Endoscopy at 9 months of age. The results were terrible. Nate did have pneumonia, but it was Aspiration Pneumonia. He also had severe esophagitis, and his esophagus was red, bleeding and inflamed. Nate had been suffering from Severe GERD with Chronic Aspiration since birth and we had no idea. His reflux meds were changed, feeds were thickened to nectar thick, and a series of test were started. Nate has 2 abnormal swallow studies, and 2 very abnormal ph probes. Despite the meds and thickened feeds Nate required a Nissen Fundoplication at 11 ½ months old. This is a surgical procedure for people with severe GERD. Nates stomach was wrapped around his esophagus to form a pouch. The purpose was for “nothing” to leave the stomach. However the surgery did cause Nate to develop Delayed Esophageal Motility Disorder.
After being discharged from the hospital with this “new” reflux fix, Nate did well for a few weeks. Than he began to gag and retch. He was getting frequent cases of hives, wheezing, and chronic ear and sinus infections. We had then determined that Nate was allergic to Milk, Egg, and Soy. He was placed on Peptamin Jr. (a milk based formula that is broken down into simple molecules). Nate was still sick, and was now failure to thrive at only 18lbs 2ozs at 15 months old (he weighed 24.6 at 11 months old). So I began my research… In October of 2003 Nate was diagnosed with a Rare Auto Immune Disease known as Eosinophilic Gastrointestinal Disorder which is a blanket term for the following: Eosinophilic Esophogitis, Eosinophilic Duodenitis, Eosinophilic Gastritis, and Eosinophilic Colitis. Nate has about 71 known food allergies, and has failed 18 food trials by reaction, and 5 by Eosinophilic Reaction. Nate is now G-tube fed the Neocate 1+, and can have ice chips, smarties, dum dums, and pixy stix. He does still require 14 medications and alot of steriod use, and frequent bloodwork to check the Eosinophils in his blood, as they have hung around 15% for the last year.
He is followed by Dr. Putnam at CCHMC and we owe Nate’s life to him and Nate entire medical care team.
We just continue to pray that the ongoing research at CCHMC will soon yield something magic!! So all children can that suffer from EGID can live and lead somewhat normal lives.