Next steps for former conjoined twins

Ann Curry • Profile

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 21^st, 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.

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