On the move: Lilith’s dramatic recovery from arteriovenous fistula

It began like any typical late summer day. Lilith Borden and her mom, Victoria, had stopped by a farm near their Concord, New Hampshire, home where the 3-year-old could enjoy an ice cream cone — and burn off some energy playing in a nearby field.

“We were running through the grass, when Lilith suddenly grabbed the back of her neck and screamed that she had a boo-boo,” Victoria remembers. Within seconds, she seemed to have trouble moving. As Victoria called for help, the little girl collapsed to the ground.

At first, the cause of Lilith’s emergency seemed apparent. A small red mark on her neck, combined with a nearby swarm of yellow jackets, suggested an obvious culprit. With a family history of insect sting allergies, an anaphylactic reaction was everyone’s first guess. Lilith received a shot of epinephrine and was moved to Dartmouth-Hitchcock Medical Center, where she was placed in a medically-induced coma to heal.

But when she woke from the coma, Lilith wasn’t any better. In fact, she couldn’t sit up or move her arms. Something far more serious than a simple insect sting was at work.

Arteriovenous fistula: A frightening diagnosis

Concerned by Lilith’s sudden paralysis and worried about the possibility of brain damage, her doctors ordered a series of MRI scans. While the scans didn’t show any brain damage, they did identify an arteriovenous fistula (AVF) in her spinal cord. AVFs are rare malformations that occur when arteries connect directly to veins, putting extra strain on them and increasing the chance of potentially life-threatening bleeding. In Lilith’s case, the AVF had already begun to hemorrhage. It would have to be treated immediately to prevent further damage.

AVFs are typically treated with a minimally-invasive technique known as endovascular embolization. This approach uses a catheter (a thin, flexible tube) to inject various glue-like compounds into the affected blood vessel or insert tiny devices to close off the fistula. Lilith’s doctor in New Hampshire referred her parents to Dr. Darren Orbach, co-director of the Cerebrovascular Surgery and Interventions Center at Boston Children’s Hospital and an expert in pediatric endovascular embolization.

“As soon as we arrived, it was clear that the doctors and other staff were on top of everything,” says Victoria. “Lilith’s dad and I were really impressed by how attentive Dr. Orbach was. He went over the procedure with us in advance so we knew what to expect.”

After a nerve-wracking wait, Dr. Orbach was back with promising news: The procedure had been successful — but only time would tell whether Lilith would fully regain her mobility.

recovering from arteriovenous fistula , playing in the snow

‘Just like any kid’

Following a weeklong stay at Boston Children’s, Lilith and her family returned to New Hampshire, where she spent about six weeks at an inpatient rehabilitation unit. There, she exceeded expectations, regaining about 95 percent of her mobility. It’s an improvement that Dr. Orbach describes as nothing short of dramatic.

“Lilith’s recovery has been stunning,” he says.

Now back home, Lilith has resumed life as an average 4-year-old.

“She loves playing in the snow and hanging out with her friends at the library or playground,” says Victoria. “She gets into a little trouble, just like any kid.”

But there are changes, too. Lilith — who will become a big sister in a few months — is more independent than ever, insisting on climbing stairs and doing other activities without help.

“It’s like she remembers when she couldn’t do these things,” says her mom. “Now she knows she can do anything if she tries.”

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