Miles was born July 2020 in New York City at the height of the Covid pandemic. He was intubated in the delivery room because he wasn’t breathing and was unexpectedly taken to the NICU at the New York Presbyterian Hospital where he would spend the next 6 months. At 3 weeks old, he was diagnosed with an extremely rare and dangerous arteriovenous malformation (AVM) called vein of Galen Malformation. Diagnosed 1 in 3 million, it affects the “great cerebral vein” that returns blood from the brain to the heart. In the abnormal tangle of blood vessels, the capillaries are missing resulting in a rush of blood to the heart and lungs which can lead to organ failure. There is no known cause, nor is it inherited. Miles’ treatment plan required a collaborative of specialties in pediatric neurosurgery, cardiology, neonatology and neurology as treating one organ could adversely impact another, and the younger the patient, the riskier it gets.
We were extremely lucky that we lived only steps away from one of the few cerebral vascular surgeons that treat this rare condition. The malformation was closed off with coils and special glue in a series of procedures known as endovascular brain embolization. The procedures were spread over the course of three months since closing off the connections all at once could result in brain damage or death. All four surgeries were successful until Miles suffered a massive brain hemorrhage as a complication of the last surgery. He was rushed into emergency surgery to drain the blood and excess fluid (hydrocephalus) from his brain through an EVD. Miles’ brain could no longer drain the fluid due to the hemorrhage obstructing the pathways and had a shunt surgically placed in his brain to drain the CSF. After a month of sedation, he began to recover, and Miles was discharged from the NICU after 182 days.
Due to the high rate of shunt infection, Miles was readmitted to the PICU with meningitis. The shunt was removed, and he underwent an ETV surgery where they drilled a hole in the third ventricle in hopes of draining the CSF without the shunt. Despite not being the ideal candidate being under the age of 1, the ETV was successful, and he remains shunt free.
Miles received 8 weeks of IV antibiotics, but despite treatment he was readmitted to the PICU 6 months later. The meningitis returned with a vengeance complicated by several brain abscesses. The infection spread to his ventricles and neurosurgery made the rare decision to administer intrathecal antibiotics (directly into his brain). After recovering one month in the PICU, Miles was discharged with an extensive treatment plan of long-term antibiotics, frequent imaging and labs. Miles received 6 months of IV antibiotics and has continued oral antibiotics for chronic suppression. Miles has remained meningitis and brain abscess free for over a year but is still very closely monitored.
Miles has undergone 20 surgeries and procedures all before the age of 2. He has suffered from several strokes, seizures and blood infection complications, but has remained neurologically intact despite his brain injuries. Defying the odds, the NY Presbyterian Hospital named him “Miracle Miles”.
As a native of Greenville, we decided to move to the upstate last December. Miles receives PT, OT, Speech, Feeding and Aquatic Therapy five days a week and has progressed at a rapid pace thanks to our amazing therapists. He started crawling last summer, had his gtube removed in June, is babbling phrases, has exceeded in fine motor skills and will take his first steps unassisted any day now. Doctors and therapists have acknowledged how special he is because he works hard, is extremely smart, doesn’t give up and has overcome insurmountable obstacles. His infectious smile and loving demeanor first seen in the NICU, has captured the hearts of innumerable people. As we patiently wait for him to walk on his own, the important thing is he is here doing it. He has taught us that the little things don’t matter because life is the ultimate gift. We thank God every day for our miracle and the team of doctors that saved his life.
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