Imagine being the parents of beautiful newborn twins. But a few months later, you notice one baby’s head is becoming unusually large. Doctors handling the case determined she has a major brain malformation.
As CBS 2’s Dr. Max Gomez reports, doctors treated it with super glue.
Little baby Joely Finkelstein was born with a malformation of blood vessels in her brain, which backed up the fluid in her brain, which caused hydrocephalus or water on the brain.
That’s why her head was growing.
If it all sounds pretty scary, it is.
Here’s how the Finkelstein family got through it.
The 6-month-old girl has already beaten the odds a few times and Wednesday her parents hope she’ll do it once more.
Joely and her brother, Jared, started out life pretty normally for twins. But a few months later, Joely’s head started enlarging. Veins were popping out in her scalp, which led to an MRI and a terrifying phone call.
“I just remember her saying something about a severe defect in her brain, and that we needed to get to the emergency room and that the nurse would meet us there,” said Darby Finkelstein, Joely’s mother.
Internet research led the Finkelsteins to Dr. Alejandro Berenstein, a world expert on the defect in Joely’s head.
It’s called a “vein of Galen malformation.” The huge, dark circle in the middle of Joely’s brain is a short circuit between arteries and veins. That enlarges the veins, preventing brain fluid from draining normally and that’s why her head was enlarged. The problem had to be fixed immediately.
“We know that before the availability of these techniques to treat these children, it was nearly a fatal disease. There were practically a 95 percent chance of dying before the end of the first year of life and maybe less than 5 percent to have a normal child by the end of 10 years,” Dr. Berenstein said.
It was actually the second treatment Joely received. Berenstein threaded a micro-catheter through an artery in Joely’s groin, all the way into the malformation in her brain. Then in an amazing, delicate procedure, he actually injected tiny amounts of medical grade super glue, closing off the vessels feeding the vein of Galen short circuit.
An X-ray after the first treatment showed the malformation already shrinking. Mom and dad immediately noticed the difference on the outside.
“Her eyes looked brighter, her coloring looked better. She just looked like a different baby. It was really quite amazing,” Darby said. “She really, personality-wise, turned into this happy, charming little baby who will ham it up for anybody that looks at her. And that was not her pre-surgery personality.”
And since the second procedure, Joely’s malformation has been virtually completely closed off. Little by little, her head and the water on her brain should return to normal.
The whole family is back in Chicago and hoping their only trips back to New York will be for checkups and sightseeing.