Zane was born full term and very large at 11.5 pounds. The first thing we noticed when he was born was that he had a hard time breathing. He had short fast breaths like he was running a mile. His cry was very strange, almost “croup-like” with a hoarse voice.
He was later diagnosed with both laryngo- and tracheomalacia, meaning areas in his throat are floppy where cartilage should be holding things open. He ended up having a surgery on his epiglottis (flap that opens and closes when you eat and breathe). After his surgery, his breathing improved quite a bit, but he is still squeaky and coughs a lot instead of crying.
During the second month in the neonatal intensive care unit (NICU), we were transferred to a different hospital to get a G-tube placed. We struggled to feed him, and he was not thriving. When we were at this new hospital, we were able to meet with geneticists, endocrinologists, neurologists, Gastroenterology and Ear Nose and Throat (ENT) specialists for his breathing.
The geneticists thought he had Beckwith-Wiedemann syndrome, and he does have a lot of the same symptoms. They did a belly ultrasound to check for enlarged abdominal organs while waiting for results. When they did the ultrasound, they found a mass the size of his spleen. During the next two weeks, he underwent multiple scans and later surgery to make sure this mass had not spread.
He was on a ventilator for a week followed by a week of high-flow oxygen and adrenaline, diuretics and steroids to help with swelling his already floppy airway. The tumor was sent to pathology and came back positive for neuroblastoma. He was only a Stage 1, “low risk” thanks to our amazing geneticists who found his tumor so early. He was also tested for Costello syndrome, and his Beckwith-Wiedemann results came back negative. We went home.
A few weeks later, we were back in the hospital with breathing issues, and they diagnosed him with Opsoclonus-myoclonus syndrome (OMS), which is another rare disorder. Two to three percent of kids who have neuroblastoma will get OMS. This means the antibodies his body built up to attack his tumor (nerve tissue) started attacking his brain when the tumor was removed (because it is similar nerve tissue).
At this point, Zane has started looking better all on his own. We decided to not treat him and see if things would wear off on their own. I am sitting here one week later, and he is looking at me—at my face. We used to think it was possible that he was blind, and now he can SEE. It seems like a miracle.
He is not out of the woods. It is possible that OMS can go away and reappear with a vengeance. It is also possible that he was misdiagnosed because of how young he is and the fact he also has Costello syndrome. It can be hard to tell where each symptom is coming from. So now we wait. We are traveling to a Mayo Clinic in Minnesota in February for further testing.
He is our miracle though. We absolutely adore him. He is our fighter, and he is showing the world what an amazing boy he is!