Next steps for former conjoined twins

Within days of Carl and Clarence Aguirre’s high stakes surgery behind them, their delighted mother relishes the treat of a lifetime.

Curry: So you’re starting for the first time to experience what it’s like to be the mother of two.

Arlene: That’s why I keep asking: is this really?  (laughs)

Today the boys are dynamic, winsome 3 year olds who play hard every day — or so it seems.  Here at Blythedale Children’s hospital, its actually work... disguised as play.

Julie Knitter, Occupational Therapist: Playing with bubbles really lets them develop eye-hand skills or eye foot skills—you can watch individual bubbles. You can reach and target with one finger a particular bubble, and pop it.

Since their separation 13 months ago, and with no significant neurological injury from the surgery apparent,  the twins have been pressed into activities  designed to open up and recalibrate their senses as well as develop their motor skills.

Remember, Carl and Clarence spent their first two years of life on their backs.  They were never upright — not even to cuddle and rest their heads on their mother’s shoulder— key muscle groups never had a chance to mature.

Actions like supporting their own heads and sitting up, so natural to others their age, are things they’ve had to build toward and be taught.

Thankfully, Carl and Clarence have been making impressive headway. This is largely due to the tenacious team of therapists who work daily with the boys.

The boys go through occupational, speech, physical therapy.  The therapists conference with Arlene, amongst themselves, and the doctors. That amounts to thousands of hours of intensely focused attention which these therapists say has helped bring the boys into their own.

Curry:  What changes have you seen?

Rita Erlbaum-Kotorac, speech therapist:  I treat Clarence.  And I’ve seen Clarence go from a young children—from a toddler. With a very strong, bubbly, energetic personality. Very mischievous.  Defiant. Strong-willed.

Anne Checchi, speech pathologist: He’s fascinated with everything he sees. And I know he appears, sometimes, to people as—as if he’s very shy and quiet.  But get him one on one, and he’s a card.  He really is.

Curry: It seems to me that we have a couple of boys who are like race horses who have been let loose at the gates.  And they’ve been sitting there for a while.

Checchi: Absolutely.

Connie Sigman, occupational therapist: My feeling about it is that they understand that there’s a whole world out there and they are ready to explore it. They want to crawl out of the room, shut the door and wave goodbye. all those things that little children like to do.

FREE VIDEO Can the separated twins walk on their own? Is there any hope that former conjoined twins can achieve one of the most important milestones for any toddler-- the ability to walk and run on their own? Dateline NBC

In mid-January, that’s just about what happens.  Five months after separation, at 33 months, Carl crawls.  Not just a few feet, but out the door… this, despite the fact that doctors discovered Carl’s left arm is not yet functioning as well as his right.

His therapists are amazed. His mother couldn’t be prouder, as her once-conjoined son crawls into her arms, realizing — along with everyone else — that this milestone is further testament that Carl is moving in the right direction.

The boys seem to learn from each other and feed off the other’s success.

A few weeks later, Clarence is crawling too.

Curry: What was it like to see them crawl for the first time?

Arlene: At first, I was so scared. Scared that they will hit their head on the floor. And then suddenly, well, they’re learning.  So, I’m a happy mother.  I am excited.  And I think my dreams come true.

Tricycling is typically something children learn to do after they’re able to walk.  Not Carl and Clarence. In March, the expert crawlers are coaxed into cycling before the fact.

Later in the spring, therapists initiate exercises to nurture the boys’ coordination and balance - vital to help them to prepare to take their first steps.

In late may, Clarence leap-frogs past Carl by being the first to take some steps with the aid of an adult. Carl will not be far behind.

It's almost too good to be true... with the boys actually on the verge of  walking on their own, spirits are running especially high at Blythedale.

But even as the brothers gain better command of their bodies, not everything is working perfectly.  Carl and Clarence  only speak a handful of words.

Curry: The boys aren’t talking much.  They’re 3 years old.

Pediatric neurologist Joelle Mast: Yes. But what is promising is that we’re seeing progress.  The boys are doing a lot more symbolic play that’s important to language development.  They’re using signs, and they’re using them appropriately.  They follow commands.

Pediatric neurologist Joelle Mast, who is Blythedale’s medical director, says Carl and Clarence’s limited speech is not necessarily an indicator of what’s to come.

Dr. Mast: at this point in time, we can’t predict what they’re going to be at age five. What we try to do is focus on small goals, and then we achieve those goals and then we move on to the next goal. 

Dr. Goodrich: Anytime you’re dealing with a child with any kind of a developmental anomaly the key thing is whether or not they’re making their steps.

Dr. Goodrich, the lead surgeon who separated the boys says their language delay is not a consequence of the surgery, but of other factors including their social isolation in the Philippines as babies, and the change of language when they came to the U.S.

Dr. Goodrich: If a kid comes to a point, plateaus and doesn’t go any further - then that’s when you get concerned.  Neither of these kids have plateaued.

In fact, earlier this month, as if on cue, everything seemed possible.  It happens when Clarence does what everyone worked so hard for.  The wide-eyed boy with the toothy smile takes his first steps on his own.  

His mother Arlene has prayed for this miracle every day since the birth of her conjoined sons.

Arlene: Suddenly, he just walking toward me. My tears started to fall down because I know it’s really my dream that I can see him walking by himself, alone.

It’s a great day for the boys and their mother who would not give up... and all the doctors and therapists at Blythedale and Montefiore hospitals who made the “impossible” possible.

Meanwhile, Carl is also on the verge of walking without help.

The brothers will eventually have reconstructive surgery on their skulls.  They will also undergo many more hours of rehabilitation therapy so that they can reach their full potentials.  But now more than ever, it’s up to Carl and Clarence to take the next steps… on their own.

The cost of the surgery and rehabilitation has been expensive: $4.5 million dollars so far. But the hospitals, doctors, nurses and other care givers involved have vowed to keep helping these boys so that hopefully, someday, they will have normal lives. Here's a link on how to help the Aguirre twins through the Montefiore hospital

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