Surgeons removed half her brain to save her life

Toddler suffered from rare condition that caused constant seizures

TODAY

Katie Verdecchia was diagnosed with a rare disorder that caused seizures until doctors removed the right half of her brain.

TODAY

updated 1/31/2011 9:06:47 AM ET

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Katie Verdecchia was born healthy -- a beautiful baby girl.

But when she was just a month old, she started having seizures. Soon the Vancouver, Wash., girl was seizing every day, up to 50 times a day. The diagnosis: Aicardi Syndrome, a rare disorder in which the right and left sides of the brain don't connect. Doctors told her parents, Maryalicia and Brian Verdecchia, that their daughter might live to be 8.

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As Katie's seizures worsened, and various medications failed to help, Katie's doctors said there might be a solution, but it was a drastic one: Hemispherectomy, the removal of half the brain. It's a rare surgery performed fewer than 200 times a year worldwide. Usually, kids with Aicardi Syndrome have damage on both sides of their brains, but Katie's left brain seemed healthy -- making her a candidate for the risky operation.

"You do what you have to do for your child -- it's hard making that decision to have surgery. But for us, there really wasn't any choice," Maryalicia Verdecchia told TODAY's Ann Curry.

In eight hours of surgery last November at Mattel Children's Hospital in Los Angeles, surgeons removed the right half of 2-year-old Katie's brain. The hemispherectomy was declared a success: No more seizures. But Katie's family still had to wait to see how she would recover -- and how much function she would have with only half a brain.

Hours after surgery, Katie woke up and almost immediately moved her left arm, her parents told TODAY earlier. Because the right brain usually controls the left side of the body, and vice versa, this was an important sign that Katie's left brain had already taken over performing functions for the right brain.

Two months later, Katie is recovering well. She smiles, gives high-fives and kisses, rides her tricycle and is enraptured by her parents iPad — which, her mom reports, she can turn on, unlock and pick apps to play with. As her parents recounted their tale on TODAY, Katie sat on her father's lap and busily played with the iPad.

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"She's going to town here," Curry exclaimed.

Doctors don't know if Katie will be able to talk -- the left brain usually controls language function, and she still has her left brain, but children with Aicardi Syndrome often can't speak. They're tracking her progress closely. Meanwhile, her parents take joy in every little step forward for their now seizure-free child.

"We try not to put expectations on her," Maryalicia Verdecchia said. "We try to just enjoy."

Link: More information about hemispherectomy
Link: Katie Verdecchia's CaringBridge journal
Link: More information about Aicardi Syndrome

Video: Tot is seizure-free after docs remove half her brain

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Transcript of: Tot is seizure-free after docs remove half her brain

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ANN CURRY, co-host: It sounds almost too incredible to imagine, doctors removing half of a person's brain so that they could live a better life . Well, that's exactly what they did to this two-year-old girl from Washington state to help her deal with a rare disorder. In a moment we're going to meet her and her parents, but first, NBC 's Miguel Almaguer has their story.

MIGUEL ALMAGUER reporting: For two-year-old Katie Verdecchia , simple steps have meant great strides in her recovery. Katie was a beautiful baby and appeared to be healthy, but just a month after her parents, Maryalicia and Brian , brought their little girl home, they noticed something was wrong. Katie had a twitch in her arm, a shake in her leg. She was having seizures.

Mr. BRIAN VERDECCHIA: She was seizing 25, 30 percent of the time, at -- any time she was awake.

Ms. MARYALICIA VERDECCHIA: Sometimes as much as 10 minutes, you know, in length, each episode.

ALMAGUER: The diagnosis, Aicardi syndrome , a rare disorder where the right and left sides of the brain don't connect. The seizures meant Katie 's brain couldn't develop.

Ms. VERDECCHIA: When you're told that your child's going to be going downhill and possibly having, you know, a shorter life than eight years, you're going to do what you have to do for your child.

ALMAGUER: Katie had a debilitating disorder, but in a sense she was lucky. Aicardi syndrome usually affects the entire brain .

Dr. GARY MATHERN (Neurosurgeon, Mattel Children's Hospital UCLA): In Katie 's case all of her malformation was on one side of her brain , which made her a candidate for taking out one half of her brain in order to stop the seizures.

ALMAGUER: Katie 's parents decided to do just that, a hemispherectomy, an aggressive surgery to remove the right side of her brain , an operation performed less than 200 times a year worldwide. When Katie 's family came here to Mattel Children 's Hospital in Los Angeles , they knew the operation would be risky, but they say it was the best option they had for Katie to lead a normal life . It took a team of doctors eight hours to operate.

Ms. VERDECCHIA: You go, girl.

ALMAGUER: The surgery was a success. No more seizures. Katie began her road to recovery at Emanuel Children 's Hospital in Portland , Oregon . No easy task at first. Two and a half months after surgery , Katie is off her walker; she's onto the stairs. Her parents hope she'll be able to speak one day, but for now, Katie 's kisses are enough.

Ms. VERDECCHIA: We try not to put expectations on her. And we try to just enjoy.

ALMAGUER: Katie will always have Aicardi syndrome , a disorder that continues to affect her vision. But a seizure- free life and half a brain mean a world of hope for the Verdecchias . For TODAY, Miguel Almaguer, NBC News, Vancouver, Washington. High five? High five? Yeah! Two, three, four, five! Yay!

CURRY: And Katie 's joining us this morning, along with her parents, Maryalicia and Brian , and her neurosurgeon, Dr. Gary Mathern . Good morning to all of you.

Ms. VERDECCHIA: Good morning.

Mr. VERDECCHIA: Good morning.

Dr. MATHERN: Good morning.

CURRY: Those eight hours -- ay -- when he was in surgery must have just been so tough. When she emerged and you heard that she was going to be OK, what was your reaction obviously?

Ms. VERDECCHIA: Tremendous joy, very happy that our daughter was alive. We made it through surgery , and that was just the first step, and we knew she was going to be OK.

CURRY: And you knew it was the right decision, right?

Mr. VERDECCHIA: Yes.

CURRY: Very, very tough, though. It's been very tough. Dr. Mathern , what do you know about -- what do we know about how Katie will now do?

Dr. MATHERN: We don't know much. Katie 's got a very rare disorder, Aicardi 's, and even though the kids with Aicardi 's, very few are really surgical candidates, however, we know from other kids that her best development will be how well she looks now, which she's looking much better, and how good the rest of her brain is.

CURRY: Well, her brain seems to be doing a pretty good job with this iPad .

Dr. MATHERN: Right.

CURRY: So she's going to town here. And she's pushing buttons and she clearly is making things happen with it. So what are you seeing in terms of the two months since the surgery in terms of her development? Brian ?

Mr. VERDECCHIA: She's doing extremely well. I mean, especially, as you said, with the iPad and stuff. She's selecting her own apps, she's navigating the system and playing and learning from the games that she wants to interact with.

CURRY: Mm-hmm. Is it the part -- this part of the brain , though, that may affect speech? And do we have some doubts about whether she may be able to speak again, Maryalicia ? Do you have any knowledge?

Dr. MATHERN: Kids with Aicardi 's generally already have a trouble speaking.

CURRY: Hm.

Dr. MATHERN: In this case, this is her right brain . Her left brain -- her left brain , which is usually the place for language, is still there. All we can do is wait and see what develops.

CURRY: Maryalicia , what has this taught you about the capacity for a parent's love?

Ms. VERDECCHIA: Oh, the love is infinite. And you do what you have to do for your child. And it's hard. It's hard making that decision to have surgery , but for us there really wasn't any choice, and it's obviously been a very good choice for us. And I won't say it's easy. I won't say that if you have surgery it'll -- everything will be great because the first few weeks afterwards are rough. But the -- if you're willing to give it a little bit of time, the journey is well worth it, so.

CURRY: So you feel as though a weight, to some degree, has been lifted because you thought you were going to lose her after a certain number of years.

Ms. VERDECCHIA: Yes.

CURRY: And now you don't have that fear.

Ms. VERDECCHIA: No. The fear has definitely been diminished a lot. The possibilities are endless. You know, and the fact that she's just doing so well and she's happier and she's healthier. It's just -- it's just a wonderful experience. And I feel bad for parents that aren't able to go through that and have that, so we're very lucky.

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