Miracle Miles' Story
Amy and AC Rizzo were looking forward to greeting their first baby in July 2020 after what was otherwise a normal pregnancy. But when their baby son, Miles, was born on July 30, he wasn't breathing. They learned he had a rare, extremely serious blood vessel malformation that could have taken his life. Thanks to the efforts of a world-class team at NewYork-Presbyterian Komansky Children's Hospital and NewYork-Presbyterian Alexandra Cohen Hospital for Women and Newborns — including more than a dozen procedures to save his brain, heart, and lungs and a 182-day hospital stay — Miles and his family joyfully celebrated his first birthday in July 2021.
Miles came into the world at a healthy weight of 7 pounds 2 ounces. His care team tried to revive him and then quickly intubated him. He was rushed to the Neonatal Intensive Care Unit (NICU) nearby, where he was placed on a ventilator. After three weeks of being unable to breathe on his own, doctors performed imaging scans which showed a dangerous condition: a vein of Galen malformation.
Also called the "great cerebral vein," the vein of Galen is one of the large veins that returns blood from the brain to the heart. Normally, blood flows from arteries to veins through a network of fine capillaries that stem the force of the blood back to the heart. In a baby with a vein of Galen malformation, the capillaries are missing. The resulting force on the veins and heart can lead to heart failure.
In addition to his breathing struggles, Miles heart was failing, and he also had hydrocephalus (water on the brain), leading to too much pressure inside his skull. "The malformation was taking up most of the space inside his head and there were innumerable, probably hundreds of little arteries feeding this gigantic vein that were draining it," explained Jared Knopman, MD, a neurosurgeon and interventional neuroradiologist at NewYork-Presbyterian & Weill Cornell Medicine. "It was starting to cause heart failure and problems with his lungs."
"When I first heard there was a brain malformation, I thought they could just go in and fix it," said Miles father, AC, who is a dermatologist. "I didn't realize until I heard the name 'vein of Galen' just how devastating this diagnosis could be." He and Amy listened to their care team — coordinated by Jeffrey Perlman, MD, Chief of Newborn Medicine at NewYork-Presbyterian & Weill Cornell Medicine and head of the NICU at NewYork-Presbyterian Alexandra Cohen Hospital for Women and Newborns — as they discussed their treatment options.
An endovascular procedure called embolization was in order, but would need to be done in a stepwise manner to close off the enormous vein little by little. Dr. Knopman and his interventional neuroradiologist colleague Y. Pierre Gobin, MD, wanted to wait until the procedure could be done as safely and effectively as possible. They wanted Miles' tiny arteries to reach a certain size so they could work through them more easily. They also couldn't wait too long because the pediatric cardiologist, Ralf Holzer, MD, noted that Miles' heart failure was progressing.
Miles had his first embolization procedure at 5 weeks of age. Drs. Knopman and Gobin inserted a narrow catheter through a blood vessel in his groin and guided it up the circulatory system to the site of the malformation, where they delivered a kind of liquid glue that closed off some of the abnormal blood vessel connections, inhibiting the abnormal blood flow to the malformed vessel. This procedure is challenging to perform on infants and requires the skills of highly trained, experienced experts in cerebrovascular surgery.
The doctors performed embolization three more times in the following months. Miles continued to recover in the NICU, with his parents spending time with him daily. Before the fourth procedure in November 2020, his doctors took him off the ventilator, and he could breathe on his own for the first time in his short life. But he took a turn for the worse after that procedure. Miles — who had been alert, cooing, and enamored with his pacifier — could not breathe on his own after this embolization. Tests showed he had massive bleeding in his brain which was causing the hydrocephalus to worsen, too.
His team rushed him into emergency surgery, where Mark Souweidane, MD, Director of Pediatric Neurosurgery at NewYork-Presbyterian & Weill Cornell Medicine, performed an endoscopic procedure to drain the blood and fluid from Miles' brain. "He was in the NICU for 182 days, but that weekend was the worst for me," said Amy. Miles remained sedated for two more weeks, after which time Dr. Souweidane did another procedure to insert a shunt to further help drain the fluid from his brain.
At this point, her son's recovery seemed to take an eternity. "I was worried what his future would look like since all of this had happened," said Amy. "But slowly and surely, he got better, day by day, and it took about a month." He eventually started babbling again, smiling and taking his pacifier. He finally went home on January 27, 2021.
He had to return to the hospital in February because his shunt became infected. Dr. Souweidane removed the shunt, drained the fluid from his brain again, and put a small hole in the third ventricle of the brain to assist with drainage. The procedure, called endoscopic third ventriculostomy (ETV), is a bypass approach that does not require an implanted piece of shunt hardware. Miles' history of hemorrhage, recent infection, vascular malformation site, and age under 1 year actually did not make him a good candidate for ETV. "He has fortunately proven the predictors wrong," said Dr. Souweidane, and Miles continues to thrive without a shunt.
Today Miles is thriving, speaking words and sitting up unassisted (thanks to his speech and physical therapists at NewYork-Presbyterian). He loves music, laughing, and smiling. Dad and mom cannot sing enough praises about his team and feel grateful they could access all of them in one medical center. "The specialists who worked with him were just amazing. The doctors, NICU team, nurses and nurse practitioners, and EMS personnel who transported him to the hospital all played a role in his recovery," said AC. "They became like family to us."
"This story is the short version of the longest days of our lives," Amy added. "I'm not quite sure why it happened yet — maybe it was to teach us some life lessons and make us stronger. Miles is the most amazing human I've ever met. He is literally a superhero."