WEARE, NH (CBS) – Lilly Borden, 4 of Weare, New Hampshire loves to play. “I’m feeling good,” she said.
Back in August it was a different story. Lilly was running around with her mom in the park when she suddenly collapsed. She could not move her limbs and then stopped breathing.
“One minute she was running and having fun and the next she’s dying in my arms,” her mother Victoria Barry said.
A nurse nearby had to give her CPR until paramedics arrived. “She went into cardiac arrest and wasn’t getting any better until they found out what exactly was causing her not be able to move,” Victoria said.
Lilly was diagnosed with a condition called AVF in her spinal cord; a very rare malformation that occurs when arteries connect directly to veins. She was rushed to Boston Children’s Hospital where she underwent Endovascular Surgery.
“Hers was on the surface of the spinal cord and so she showed up with an initial hemorrhage into the spinal cord with this rapid connection between arterial blood flood and this vein,” Chief of Neuro Interventional Radiology at Boston Children’s Hospital Dr. Darren Orbach said.
Mom says Lilly had to undergo extensive rehab. “It’s watching her go through her baby steps all over again,” Victoria said.
Dr. Orbach says he sees only a few dozen of these cases a year. “In the last few years we discovered a set of genetic mutations that are related to these conditions and that’s the case in Lilly as well,” Dr. Orbach said.
Today Lilly is 95% recovered. Mom says she still has to take her daughter to get an MRI every year to make sure her AVF doesn’t return.
“Thank you to everyone who treated her because you saved her life,” Victoria said.