Next steps for former conjoined twins

Twins Carl and Clarence Aguirre, once joined at the head, have been behaving like the 3 year olds that they are. Rambunctious and wide-eyed, they are growing boys on the move, who, since their pioneering surgery in August 2004, want to meet the world that suddenly opened up to them.

All this, with the encouragement of a highly dedicated team of rehabilitation therapists, as well as doctors and therapists at Blythedale children’s hospital in Valhalla, New York.

The goal is to bring Carl and Clarence as close to having normal lives as possible.

No one knows to what degree the boys actually will catch up. But there is one thing everyone wants them to do — one thing that their mother says would make her dream come true: for her sons to walk.  Its one of the quintessential milestones for any child and a key to independence.

But just getting this far from where they started three years ago is remarkable enough.

Indeed, it’s hard to believe that at one time the twins’ prognosis couldn’t have been grimmer.  Their condition, an extremely rare accident of nature,  left them confined to their backs and was expected to ultimately kill them.  Their mother opted for a dangerous life and death separation surgery.

Ann Curry, anchor: Why are you willing to take the risk?Arlene Aguirre, mother: I don’t want them to blame me.Curry: You don’t want them to say, “Mom, why didn’t you take care of me?”Arlene: Yes.  Curry: “Why didn’t you separate us?”Arlene: Yes.

How their fortune turned— making the seemingly impossible possible— is a breathtaking story of courage and daring. It is also arguably one of the great medical breakthroughs of recent times.

Carl and Clarence’s story begins before they were born in January, 2002, halfway around the world.  That’s when Arlene Aguirre, a 29 year old nurse from a rural island in the Philippines who was 4 and ½ months pregnant, learned she was carrying twins.  But an ultrasound test made Arlene’s doctor realize that this was no ordinary set. Her twins were joined at the head.

Arlene: I was crying, crying because I can’t believe that I have conjoined twins inside of me.

Carl and Clarence Aguirre were born two weeks early via cesarean-section on April 21st, 2002.  Though healthy, together they only weighed just over 8 lbs.

Her made doctors believe the boys’ brains were separate, but Arlene was told that her sons did share some critical veins and arteries,  making each one inextricably dependent upon the other for life.

Arlene: I’m in love with them because they’re born.Curry: They survived.Arlene: Yeah, and they survived.

From the very beginning, Arlene, a single parent, dreamed of separating the boys — knowing it was their only chance for independent lives.

She had no savings.  But Arlene was ultimately directed to a charity that specializes in recruiting able medical sponsors.  The charity turned to a doctor who had helped before — Dr. James Goodrich director of neurosurgery at the Children’s Hospital of Montefiore in the Bronx, New York.

In agreeing to take on the boys’ case pro bono, Dr, Goodrich and his medical team would be stepping into highly uncharted territory.

They had never before performed a separation surgery. On top of that, they planned to use a half-forgotten surgical approach almost never used to separate conjoined twins — one done in stages over a period of months.  The typical approach is to attempt a separation in one long marathon surgery.

Dr. Goodrich’s colleague, David Staffenberg, Montefiore’s chief of pediatric cranial facial surgery explains the rationale for their renegade approach.

Dr. Staffenberg, Montefiore chief of pediatric cranial facial surgery: Doing these smaller stages will expose Carl and Clarence to less anesthesia, less time in the operating room, less intravenous fluids, less swelling of the brain.

Arlene could only pray they were right.

With a mix of gratitude and fear, she and her then 17 month old boys arrived in New York in September 2003.

A few weeks later, Dateline began our exclusive coverage of the Aguirre’s incredible story.

I get an inkling of just how complex it could be for Arlene when I help move her sons from one room to another at Blythedale children’s hospital.  That’s where lead surgeon Dr. Goodrich arranged for the twins to stay also pro bono for rehabilitation therapy between surgeries.

Carl, the bigger of the two, is the quiet one, while Clarence seems more energetic and social.

The challenges the doctors face are hugely complex: Twins like Carl and Clarence share a multitude of intertwined veins and arteries that are almost impossible to tease apart — even the tiniest misstep can be fatal.

Secondly, often the most perilous undertaking is splitting the shared sagital sinus, the largest vein, which takes blood from the brain to the heart.

Thirdly, one twin is often born with the duty of performing most of the major bodily functions for both. To engineer two separate systems that operate normally without losing either child  is as problematic to accomplish as anything in medicine.

Curry: How many times have two normal healthy children emerged from this kind of surgery without any damage?Dr. Goodrich: There are no cases of that situation.Curry: But you’re confident that you could be the first?Goodrich: Yes.Curry:  What gives you a reason for optimism if this is the very first case of conjoined twins you have ever dealt with?Dr. Staffenberg: When you take Carl and Clarence and you look at the problem,  what is involved neuro-surgically, what is involved  from the plastic surgical standpoint - the smaller parts of this case are problems that we deal with absolutely every day.Dr. Goodrich: So we’re essentially plagiarizing.  Taking techniques from other parts of operations we do to make this successful.

To help boost the odds of survival, the doctors decided the boys had to get bigger and stronger before undergoing surgery.

There is a real sense of promise in the air here, but in October 2003, having reached the moment of truth —the first of several surgeries— Arlene admits to feelings any mother would have.

Curry: I wouldn’t be doing my job as a reporter if I didn’t ask you this question: Will you feel it’s the right decision if it doesn’t work out for the best?  If one of the boys is damaged or dies?Arlene: It’s hard, you know. I will not think about it I might lose one of them.  But for me, it’s the only way.  You know?Curry: It’s the only way. Arlene: Yeah.

In October 2003, 5 weeks after their arrival to New York, the first of a series of surgeries begins. Arlene Aguirre, the courageous Filipino mother who had traveled half way around the world with her conjoined twin boys Carl and Clarence, reluctantly leave them for the first time.

Utilizing state of the art imagery and donning high power magnification lenses, neurosurgeon James Goodrich takes the giant leap — beginning the separation by starting to tease apart the intricate web of tiny veins.

After an intense 3 hour surgery, the relieved doctors emerge to tell an anxious Arlene that everything in the first surgery went according to plan.

There is no apparent neurological damage in either boy, and within days, they delight everyone with their quick recoveries.

With the boys doing so well, therapists at Blythedale Children's hospital introduce them to the unfamiliar sensations of sitting and standing.

In late 2003 and early 2004, doctors perform two more very dangerous surgeries.  Each one designed to delicately pry apart the boys’ brains and further separate the intertwined blood vessels and major veins they share...  and like the first surgery, these next two also go without a hitch. The separation is now 90 percent complete.

Just as significant to the doctors is how well the twins’ circulatory systems have adjusted.  Remember, the challenge is not only separating them, but getting their bodies to fully function without the other.  It’s more than enough to keep Arlene’s dream alive.

Curry: When you think about the positive, what’s the picture in your mind?Arlene: I saw them running, walking, standing and—playing.Curry: And smiling at mama.Arlene: Yeah.  And looking for me. 

On August 4th, 2004, almost 10 months after the twins’ first operation, doctors decide the time is right for the fourth and final surgery — the actual separation, and the one they say will be the most complicated and risky surgery of all.

It’s a painstaking process. The doctors go millimeter by millimeter, untangling the last of Carl and Clarence’s veins; what they think will be the final steps of the separation.

Dr. Goodrich and his team also start to address the complete splitting of the boys’ sagital sinus, the large vein they share that is crucial part of their drainage system carrying blood from their brains.

While all of this is going on, Arlene goes to the Montefiore hospital chapel to pray, asking god to watch over her boys and help guide the surgeons’ hands.

Afternoon passes into evening;  everything seems to be moving on track.  But then, literally at the 11th hour into surgery there is a major complication.

The team discovers something that all its advanced technology and planning never revealed.

Contrary to what the doctors thought, Carl and Clarence actually share a small part of the brain.

But now with the boys nearly apart, doctors are at a point of no return.

The minutes tick by.  It now is 12 hours into surgery.  The medical team is dealing with fatigue and working hard to maintain focus.

After 90 minutes of further analysis, Dr. Goodrich feels certain that he has found the natural dividing place between the two brains.  He is ready to make the incision. This final cut will make what was once a fused brain into two.  It’s the kind of dangerous incision the doctors had worked to avoid.  But the Montefiore team believes they got it right.

And it all comes down to this moment.

While Dr. Goodrich continues working, Dr. Staffenberg leaves to deliver the great news to Arlene.

Its almost 4 a.m.,  21 hours after her boys underwent surgery, Arlene sees Carl and Clarence one at a time for the first time ever.

But what will her boys  be like after recovery?  Will they learn to talk and play like other children?  And  will Carl and Clarence finally be able to fulfill their mother’s greatest dream—to walk on their own?


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)

Todaythe 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.

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.