Little Girl Defies Odds, Beats Rare Brain Defect
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"It's a baseball analogy," says Mike Sputore of Batavia. "It's the bottom of the seventh, two outs; you're down by twenty runs."
Mike is talking about his 17-month-old daughter's ordeal with a brain deformation – an ordeal that nearly took little Brooklyn Sputore's life.
"It's not over 'til it's over," says Mike. "You never give up on something you love that much."
It was only a year-and-a-half ago that Brooklyn was expected to die, before she was even born.
"I had a 37-week ultrasound, just because we wanted to see the 3-D pictures," remembers mom, Julie Sputore. "That's when they found out that she had something wrong with her brain: a 'Vein of Galen' brain malformation."
Only 40 people are diagnosed each year in the United States, with "Vein of Galen malformation." Most of the victims are elderly.
That truly made little Brooklyn, "one in a million."
"The doctor told us, 'Well...your baby will probably die once she's born,'" says Julie.
The "Vein of Galen" is the brain's drain. While arteries feed blood to the brain, the "Vein of Galen" funnels it out the bottom of the skull, back to the heart and lungs.
While still in the womb, Brooklyn's "Vein of Galen" had become severely misshapen. It was filling her skull with fluid – fast.
"The doctors prepared us for the worst," says Mike. But he and Julie weren't about to prepare for that.
"We never even looked at each other, and even thought for a minute that she wasn't going to make it," he says. "I told Julie basically just to relax, and whatever happens, happens. We'll deal with it when it happens.
"Thankfully, it never happened."
Brooklyn was born in a C-section delivery, and eventually came home. However, her brain was still filling with fluid, much faster than it could drain.
The only answer now was to find a doctor to fix it; otherwise, Brooklyn's brain would eventually hemorrhage, and she would die.
"We kept searching," says Mike, "and we finally found Doctor Alejandro Berenstein."
Alejandro Berenstein just happens to be the man who invented "Vein of Galen" surgery.
"Even though he was out of our insurance, we didn't even hesitate," says Mike.
It took eleven months, three therapeutical appointments, and one harrowing surgery in New York City for Doctor Berenstein to perform his procedure.
Then one day, on the final planned appointment, the doctor walked into Brooklyn's hospital room...smiling.
"He's got her scan up on the screen, and he turns around with a big smile, and he just tells us...she's cured," says Julie. "I was bawling my eyes out, and we gave him a big hug. It was great...it was awesome."
Little Brooklyn still has a small tube in her head, to drain some excess fluid that still collects now and then. She also has artifical veins in her skull, and there may be minor surgeries in the future to replace them.
But the doctors say Brooklyn is now a normal little girl – and a miracle.
"She fought through everything," says Mike."In most cases, it probably would separate a family, dealing with all this, but I think it brought us closer together.
"She makes us laugh all the time," he continues, as Brooklyn cries out 'Da-da!' across the room.
"It's just really...very inspiring to know her."