The Aguirre Twins - A Back Story Paid Forward
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The Aguirre twins at the PAL Foundation office (Photo courtesy of Maria Carmen Sarmiento)
Recently, the 10th year anniversary of the surgical separation of the craniopagus or joined at the head Aguirre Twins was in the news. What the stories don’t mention is the long months of preparation just to get the twins to the USA and the crucial role certain Filipinos played to make this happen.
Arlene Opjer Aguirre was a company nurse in Manila and four months pregnant when an ultrasound revealed she had twins conjoined at the head or craniopagus—more complex and rare than the omphalopagus or joined at the middle. Ten days before her due date, on April 21, 2002, Arlene delivered Carl and Clarence though C-section at the PGH (Philippine General Hospital). Their combined birth weight was only 3.8 kg but they had an almost perfect Apgar score of 9.9. [Apgar score measures a newborn’s health. Perfect score is 10. - Editor]
The PCSO (Philippine Charity Sweepstakes Office) helped the newborn Aguirre Twins stay in the PGH nursery for over a month but had no funds for their separation. With two special babies to care for, Arlene could not go back to her old job, and returned to her parents’ one room house without electricity or indoor plumbing, in Hacienda Paz, Barangay Matagoy, Silay. Her mother Evelina resigned from her job as a clerk at the Hawaiian Sugar Central to help Arlene care for the boys. The boys’ father could only send them a small monthly allowance being a married man of modest means, with four older children to support.
The Aguirre twins in transit to the U.S. for their operation. With the author (left seated), their mother Arlene, and the Philippine Airlines flight crew (Photo courtesy of Maria Carmen Sarmiento)
In late February 2003, when the Aguirre Twins were nine months old, their pediatrician, Ceres Baldevia, referred them to the PAL (Philippine Air Lines) Foundation. They were very malnourished and often ill with aspiration pneumonia. Most craniopagus die in early childhood so separation was urgent. I asked around among the PAL Foundation foreign partners. Within two weeks, Dorita Holland Urrata of Children’s Chance in Connecticut gave me the hopeful news that James T. Goodrich, a neuro-surgeon and David Staffenberg a plastic surgeon, both of the Montefiore Medical Center in the Bronx, New York, were interested. But first, Goodrich wanted his Filipino buddy from Columbia Presbyterian-NYC residency years, Willy G. Lopez of the PGH, to make sure the Aguirre twins were separable. Coincidentally, Lopez had been on both Philippine surgery teams that had successfully separated craniopagus twins many years past. The PGH craniopagus had soon died of complications, however. Of the girls separated in a private hospital through political donors, one survived into adulthood without serious deficiencies except for the gap in her skull.
The Aguirre twins at the Welcome House with Dr. Fe Del Mundo (Photos courtesy of Maria Carmen Sarmiento)
The Aguirres were actually the second pair of conjoined twins that Dorita was helping the PAL Foundation with in 2003. She had a soft spot for the Philippines. Her father worked for the Osorios, Filipino sugar barons of Victorias Milling, who were their neighbors in Greenwich Connecticut. Dorita’s early childhood was in a wedding cake mansion by the Manila Bay, with polo ponies and uniformed servants. When the Japanese invaded Manila, she was thrown into the Santo Tomas Internment Camp (STIC). Dorita credited her selfless Filipino amah with her surviving World War II; the amah risked her life to bring the Holland family whatever food she could scrounge. Also there was Dr. Fe Del Mundo (the Philippines’ first pediatrician and the first woman to go to Harvard Medical School) who prevailed on the Japanese to let her care for the frailer Allied citizen children in the College of the Holy Ghost, Mendiola. The Liberation of Manila resulted in Dorita getting a leg shrapnel wound that left her with a permanent limp. Back in Connecticut, she raised a family, sailed yachts competitively, rescued pets and volunteered for charities, which is how we met.
The Aguirre Twins with their mother and grandmother came to Manila as PAL Foundation Medical Travel Grantees by April 2003. For the next five months, they were housed for free by the Religious of the Good Shepherd, another staunch PAL Foundation partner. The Makati Medical Center and the Cardinal Santos MRI facilities donated imaging tests with 3D reconstructions for Dr. Lopez and the US doctors to evaluate. To clear them for air travel, the Aguirre Twins went to Dorita’s WWII savior: Dr. Fe Del Mundo. She personally examined them and wisely advised their mother to put a pillow beneath their heads while they fed, to minimize chances of their swallowing food the wrong way and getting aspiration pneumonia. Other specialists from the Fe Del Mundo Medical Center such as the neurologist Marietta M. Diaz and the cardiologist Maria Celia Reyes-Regino likewise donated their services.
By July 2003, the Aguirre Twins had their medical clearances to fly to the States, but the US Non-Immigrant Visa (NIV) Section refused to issue medical treatment visas. The NIV consul insisted they get their separation surgery done in the Philippines even though there were no local sponsors, not even for the charity ward. I SOSed J.V. Rufino of the Philippine Daily Inquirer who promptly assigned a reporter to do a front page story and even got GMA-7, the PDI broadcast partner, to send a TV news crew to feature the Aguirre Twins’ plight. Finally, the medical treatment visas came—but not for the grandmother Evelina Aguirre. She got a three-month visa only on the third try in 2004, just in time for the separation surgery, after I accompanied her to her NIV interview and guaranteed I’d present her upon her return. Thus, I escorted the Aguirre Twins with their mother in September 2003. PAL Foundation janitor Samuel Orcales ingenuously sewed two airline bassinets together so the twins could lie safely in this during take-off and landing and their mother and I could carry them more easily through the tube.
In November 2003, the PAL Foundation gave Dr. Willy G. Lopez tickets so he could join the Montefiore Medical Center team for the first in the series of staged surgeries to separate the Aguirre Twins. This was an innovative and still untested approach. The New York State Medical Licensing board issued Dr. Lopez a special temporary license to operate. Dr. Lopez returned for the final 18-hour separation surgery in August 2004 and worked on Clarence, the more “typical” or normal twin.
The Montefiore Team - Neurosurgeon Dr. James Goodrich (right) and cranio-facial plastic surgeon, Dr. David Staffenberg. With Arlene Aguirre and Maria Carmen Sarmiento (Photo courtesy of Maria Carmen Sarmiento)
Since the Aguirre Twins, the PAL Foundation has been involved with another three sets of conjoined twins. Sadly, none of their locally done separation surgeries were as successful as the Aguirre’s. Dr. Goodrich speaks frankly of what he calls the “twin halo effect.” Happily, some of that has rubbed off on other PAL Foundation Medical Travel grantees. There continue to be wonderful ripple effects due to the encounters we had through this literally one-in-ten-million cases (that’s the incidence of craniopagus births). Among these are:
Dr. Willy G. Lopez operated for free on several PAL Foundation grantees and even got his colleagues in other medical fields to donate their services for a Morquio Syndrome patient;
The Cardinal Santos MRI continues to donate or give hefty discounts to PAL Foundation Medical Travel Grantees;
Healing the Children CA, which helped the Guatemalan Craniopagus Twins in 2002, spun off into Mending Kids International in 2005, and sponsored PAL Foundation Medical Travel Grantees for congenital heart repair at the Philippine Heart Center and other surgeries like imperforate anus repair at the PGH; MKI has sent a PHC team to Cambodia on a surgery and teaching mission;
Until the lingering illness and subsequent passing of its founder Dorita Holland Urrata, Children’s Chance CT continued to help PAL Medical Travel Grantees; one of them, RM, an abused and neglected child from Cagayan de Oro with multiple congenital anomalies was treated at Yale and soon after, adopted by his American host family. He is now in high school and works part-time, sending the bulk of his earnings to his family in Cagayan De Oro.
Although the surgical separation of the Aguirre Twins and even their continued stay in the States is not without controversy, for children like RM, and the many others who have had successful surgeries through the contacts first made through the Aguirre Twins case, there have been many life-changing happy endings and new beginnings.
The Aguirre twins today. With mother Arlene (Photo by Kathy Willens/AP)
Maria Carmen Sarmiento
Maria Carmen Sarmiento is an award-winning writer and the former Executive Director of the PAL Foundation. She can be reached at menchusarmiento@gmail.com; menchusarmiento@ymail.com