More good news for separated twins

/ Source: Dateline NBC

Dateline has been following closely for some time the ground-breaking medical procedure that resulted in the separation of conjoined twins Carl and Clarence Aguirre. Their doctors believe it's the first time twins joined at the head have been separated without brain damage to either one. So how are the boys and their mother doing two months later?

Arlene Aguirre: “Oh my God, its the first time I get to hold like this. It’s so amazing, it’s so wonderful and I am so proud. I can hold him like this already. One by one.”

Ann Curry: “So you're starting really for the first time experiencing what its like to be the mother of two?”

Aguirre: “That's why I kept asking them, is this really?”

In late August, just two weeks after their landmark separation surgery, 29-month-old Carl and Clarence Aguirre are deemed fit enough to leave the Children's Hospital of Montefiore in the Bronx, New York.

The Filipino boys had spent their entire lives joined at the head, and lying on their backs. Now they sit up in a stroller, side by side, as their jubilant mother, Arlene, wheels them out, along with doctors James Goodrich and David Staffenberg, who led the separation team.

At curbside is a crowd of well-wishers. Many are hospital personnel who've rooted for the Aguirres throughout their high stakes ordeal. The fanfare continues as the twins return to their second home, Blythedale Children's Hospital in Valhalla, New York, where the twins are undergoing rehabilitation between surgeries. Many here see Carl and Clarence's success as nothing short of a miracle.

The twins had just bounced back from a separation surgery that often results in brain damage or even death. Theirs was an unconventional separation, done over the course of four brain operations instead of the usual way, in one marathon surgery.

Their doctors, who'd never performed a separation before, had been inspired by a half forgotten separation surgery done 52 years earlier. That case, the Brodie Brothers, was the first time that twins joined at the head were separated in multiple stages. While one died shortly after surgery, the bigger boy, Rodney, was the first twin like the Augirres to survive a separation for any length, in his case 11 years.

And even while the multi staged approach seemed to be working in the Aguirres’ favor, there was, in the final stage of the final surgery, an unexpected obstacle, one that could have easily spelled disaster. Literally in the 11th hour, when there was no turning back, despite imaging, doctors were floored to discover that the twins' actually shared some brain.

Thankfully, after a tense 90 minutes, surgeon Dr. Goodrich found what he was certain was the natural divide between Carl and Clarence's brains and a final incision was made. And now, almost two months later...

Curry: “Are you ready to say today that there has been relatively no damage or such an insignificant possibility of damage, that you feel comfortable?”

Dr. James Goodrich: “As far as I can tell, this is the first two twins that have really truly come out without any neurological injury. And if there are any other sets out there, we've not been able to find them.”

With things going so well, Carl and Clarence are now in the business of building normal lives for themselves. In its own way, this is as formidable an undertaking as the surgery itself.

Dr. Joelle Mast: “When they came back, they were separated and muscles that they had never used before were very weak. But they're making amazing gains, so we're very pleased.”

While she won't predict just when, Blythedale Medicial director and pediatric neurologist Joelle Mast says the twins are on track to sit up and walk.

Dr. Mast: “Now Carl can hold his head up for over a minute. Clarence can hold his head up for many more seconds than he could before.”

What’s more uncertain is to what extent the two and a half year old twins will catch up cognitively.

Dr. Mast: “Thinking, learning, memory.”

They're at least a year behind.

Curry: “Is it possible that some part of them will always be affected by the fact that they're conjoined?”

Dr. Mast: “You really can't assess that until language is fully developed, so we don't know that.”

And that's been one of the more intriguing mysteries. Both boys are alert and engaged, but, unlike most other kids their age, they speak only a handful of words. Dr. Goodrich speculates why.

Dr. Goodrich: “Twins are notorious for delayed speech. What makes our kids a little bit unique was this hardwire brain going together.”

Curry: “So this is your leading theory in terms of why speech is delayed is because they were communicating through their brains?”

Goodrich: “Well what do you do when you link two computers? You know you put a wire between the two computers and you can simultaneously transmit information in either direction.”

Arlene sensed such a link when she saw her sons move in tandem around the floor together, effortlessly changing directions in silence. Since the so-called "hardwire" link has been severed, there's been no evidence of special communication.

But now that they can see each other eye to eye, their relationship is encouraged through activities they could never do before, explains speech therapist Rita Erlbaum Kotarac.

Kotarac: “Playing with the ball and turn-taking is a precursor to when you're speaking and its also a great way for them just to discover how to play with a ball and how you play with each other so it accomplishes several things at the same time.”

Arlene is of course, her sons biggest cheerleader. And she has been ready for their first steps since, well, day two.

Aguirre: “Two days after surgery I bought them tennis shoes.”

Curry: “You're not wasting anytime!”

Even as the boys continue to progress, there's at least a year of skull reconstruction surgeries ahead for them. This determined mother who came to the United States knowing no one can't seem to say thank you enough times to everyone who's helped.

Aguirre: “People who really help me and supports me.”

Curry: “These people have found a place in your heart.”

Aguirre: “Even though they're not my family—“

Curry: “They have in some ways become your family.”

Aguirre: “Yeah.”

Arlene's also overwhelmed by the kindness shown by many she's never met. Since arriving, she's received thousands of supportive cards and e-mails. One letter in particular stood out. It came from someone who understood her plight like no one else.

“…We are both parents who delivered beautiful conjoined twin boys..."

She's 82-year-old Marge Brodie. Her sons underwent that pioneering multi-staged surgery, the one which 52 years later, helped inspire the Aguirres' doctors to try the same.

Brodie: “We enjoyed the time we had with Rodney.”

Aguirre: I feel like she's also my mother - because she understands what I feel.

Dateline figured that these two mothers would enjoy meeting, so we arranged for Mrs. Brodie to fly to New York and come to Blythedale Children's Hospital. Over a couple of hours, the two women share photos and gab about everything under the sun.

Brodie: “Hmm you've got your football helmet on. Maybe you'll be a football player.”

Aguirre: “No, they're going to medical school.”

Brodie: They're going to medical school? You're so lucky they're ok.”

There's also gratitude on the part of the Aguirre twins' doctors.

Dr. Goodrich: “So you're the famous Mrs. Brodie.”

Brodie: “You can call me Marge.”

Gratitude, because of lessons learned from the Brodie brothers' historic separation a half century before.

Dr. Goodrich: “What's amazing is it took us 52 years to get to this point. That's a long time when you think of medical advances.”

Dr. David Staffenberg: “It’s like a thought was interrupted and lost for a while.”

But now that it’s found again, everyone is hoping that lessons from the Aguirre's surgery will be learned and that further advances will be made, so that absolute success in cases like theirs will become the norm. Perhaps Carl and Clarence will help in more ways than one. Arelene, remember, wants both to grow up to be doctors.