iStock/Thinkstock(FARGO, N.D.) — When he was just 9 days old, Phoenix Saulter suffered a stroke so damaging that his doctors told his parents that the newborn wouldn’t survive.
“There was so much clotting and no blood leaving his brain,” Phoenix’s father, Robert Saulter, told ABC News. “The only thing to do was to give him some pain medications and to try to stay with him till he passed.”
Saulter and his wife, Genevieve Saulter, were inconsolable until neurosurgeon Dr. Alexander Drofa of Sanford Brain and Spine Center in Fargo, North Dakota, spoke up. He would do a surgery to remove the clot and give the infant a slim chance for survival.
“He said he couldn’t live with that. … He couldn’t deal with not doing anything,” Robert Saulter recalled Drofa saying.
Today, just over a year after the surgery, Saulter and his wife are speaking about the incredible survival of their only child in the hopes of helping other parents or doctors facing a similar situation.
“Anything we can do to drive attention to that,” Robert Saulter said. “Because his exact procedure [may] help another kid.”
At the time Phoenix was born, Robert Saulter, 32, was stationed at an Air Force base in Minton, North Dakota. After showing signs of distress and dehydration, Phoenix was taken to Sanford Medical Center in Fargo, North Dakota, at 9 days old. It was there that Drofa discovered that the newborn had suffered a stroke.
After physicians discovered the potentially deadly condition, the Saulters planned to say goodbye to their son. However, Drofa proposed an alternate plan. He offered to perform a procedure to remove the clot from the blood vessel to the brain and put in a stent, giving Phoenix a slim chance at survival.
“He regularly performs that procedure on adults [but it had] never been done on a newborn,” Saulter said. “He was willing to try it.”
To perform the surgery, Drofa and his team also had to find a way to quickly operate with medical supplies designed for adult stroke patients.
“One of the things that made the procedure possible … we had lots of experience here and were able to MacGyver” a solution, Drofa told ABC News. He explained the team searched for “the smallest device” they used in adults so that they could use it on Phoenix.
At the time, Drofa didn’t want Phoenix’s parents to hope for too much and told them the chances of Phoenix surviving and recovering fully remained small. As Phoenix was wheeled into surgery, both Robert and Genevieve Saulter, 34, thought they may never see their son alive again.
“They let me pick him up with all the tubes,” Robert Saulter said. “He wasn’t really breathing without the bag and [they] let me hold him in my arms and let me tell him goodbye.”
For hours, the Saulters waited for word of whether their son had survived the surgery.
“It was the worst part — just waiting and waiting,” Genevieve Saulter said. “They had us in a room and we just waited for the phone call and the doctor said he would let us know either way.”
Drofa and the other doctors were able to remove the clot and put in the stent, but they also had to figure out how much medication to give the infant to keep the clots from reforming. The anticoagulant commonly used in adult stroke patients had not been tested in newborns.
“We had to custom make the dose,” Drofa said.
After the surgery, Phoenix was taken back to the intensive care unit as both his parents and doctors anxiously waited to see how he would do. A day after the operation, Drofa said the tests showed blood pumping normally in his brain and no new clots.
“I was surprised because we didn’t know what was going to happen. … He didn’t show any deficit,” Drofa said.
Phoenix’s parents had been bracing for the worst. But 24 hours after the surgery, with promising test results, they said they started to hope for the best.
“That’s when we did feel hopeful again,” Genevieve Saulter said.
For the next few months, doctors kept a close eye on Phoenix to check for any sign of re-occurrence. While Phoenix was at risk for a host of developmental delays or other issues caused by the stroke, his parents say 12 months later, he’s doing great.
“He’s ahead, if anything,” Robert Saulter said. “He walked early, he talked early, he has the biggest personality.”
The outcome was so unexpected that Drofa published a case study of Phoenix’s case in the medical journal Pediatric Neurosurgery last September.
On New Year’s Day, Pheonix celebrated his first birthday as a seemingly healthy and happy baby. Robert Saulter now has a tattoo of a phoenix feather on his arm in the same area where he cradled his son just before he was taken to surgery.
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