Author: Joe Harkins
They are not perfect brothers, but then, what almost-teen boys are.
Carl is quiet and uses a wheelchair and leg braces to move about. His brother, Clarence, is an attention-grabber, leaping to greet visitors with high-fives. Both wear helmets to protect their skulls. For the most part, their mother says her sons are just fine.
A decade has passed since Carl and Clarence Aquirre, conjoined twins from the Philippines, embarked on a medical tourism journey to the United States. And although surgery at Children’s Hospital at Montefiore Medical Center in New York City in 2003 was not without flaws, their separation is reason enough for their mother to celebrate the anniversary of her decision to take advantage of a medical tourism opportunity.
“When they were born, the doctors at home (Philippines) told me, ‘You have to choose which one is to live,” Arlene Aquirre told CBS. “I said, ‘I cannot choose that.’ The doctors here (New York) did not ask me to choose.”
The boys, now 12 and enjoying 7th-grade in the United States, were born joined at the top of their heads, unable to sit up, stand straight, eat normally – or see each other. Doctors believed that without the surgery, both would have died within 6-8 months from complications of craniopagus.
On in two-and-a -half million live births are craniopagus. The Aquirre boys were among the first set of twins to undergo successfully staged separation, performed over a 10-month period.
“The historical treatment was basically to sacrifice one to save the other,” said James T. Goodrich, M.D., director of pediatric neurosurgery at Montefiore who led the multidisciplinary surgical team. “The staged separation turned out to be obviously very successful.”
Separate, But Equal
The groundbreaking surgery, now accepted by the Congress of Neurological Surgeons and the European Society of Pediatric Neurosurgeons, separating the craniopagus twins has become the standard-bearer for neurosurgeons.
“If they hadn’t come to us when they did, they would have withered away and died,” said Dr. Robert Marion, director of the Children’s Evaluation and Rehabilitation Center at Montefiore and the boys’ pediatrician. “We are honored to have played a part in helping these boys develop into the unique individuals they are today.”
Knowledge gained from the procedure has helped guide similar successful surgeries around the world. Goodrich and his team have since separated four other sets of joined-at-the-head twins in London, Melbourne and Riyadh, Saudi Arabia.
“As patients around the world become more comfortable with foreign doctors, medical tourism is proving that no one country has a monopoly on life-saving procedures,” said Renée-Marie Stephano, President of the Medical Tourism Association®. “Increased numbers of healthcare professionals are returning to their native countries after long tenures of education and training overseas. Combined with private and public sector investments in local medical infrastructure, this trend is not only helping to reinforce the globalization of healthcare, but opening windows to life-saving procedures around the world where people never thought possible.”
Despite the advice of her American doctor and her own reservations, Amy Scher, took three trips to New Delhi, India, where she received an experimental embryonic stem cell therapy to treat Lyme’s disease, a condition that caused her muscle damage, brain lesions and near constant pain.
“Western medicine failed me,” said Scher, author of “This is How I Save My Life: A True Story of Embryonic Stem Cells, Indian Adventure and Self-Healing.” “I agreed to be the guinea pig, because it offered the most potential for regeneration. It was my best shot a saving my life.”
Today, Scher says she is completely healed of all effects of the autoimmune illness. Her life-saving adventure should come as no surprise to Jeca Periera, an 11-year-old East Timorese boy who traveled to Melbourne in September to repair the damaged vales in his heart that left him breathless, dangerously underweight and unable to attend school.
Doctors said that without treatment, Jeca’s condition would continue to deteriorate and he would likely be dead within six months. But, the East Timor Hearts Fund, an Australian charity, stepped in and flew Jeca and his mother from impoverished East Timor and its under-resourced medical system to Melbourne for the life-saving, but relatively simple operation.
The procedure, dubbed a mitral balloon valvotomy, inserted a small balloon into one of Jeca’s narrowed heart valves. With the aid of an internal ultrasound, the balloon was repeatedly inflated and deflated to slowly stretch the narrow valve and allow more blood to flow and make breathing easier. One day after the procedure, Jeca was back on his feet.
Technologies along with the increasing mobility of consumers are closing gaps in healthcare access. The Aquirre boys shared a “bridge” of their own, a 5-6 centimeters long piece of brain that had to be divided. Goodrich said eventually there was some degeneration of Carl’s right parietal lobe, which controls the left side of the brain, following separation. Carl suffered seizures, now controlled with medication, and has limited use of his left arm and leg.
“The doctors at Montefiore saved the lives of my sons and I am so grateful for every moment spent with them,” said Arlene Aquirre, a single mother who lives with the boys in New York on a medical visa. “While they have distinctly different personalities, it is heartwarming to see them interacting, with Clarence acting as a big brother to Carl and helping him around the house.”
Carl loves to eat ice cream and play video games. Clarence enjoys swimming, dancing and singing. Both continue to see Dr. Goodrich twice each year for check-ups, and their pediatrician and neurologist as well. Doctors are optimistic that their bone will become more fully developed and there will soon come a time when they no longer need them.
But, for now, the boys are fine.
“You are now the mother of two boys,” Dr. David Staffenberg, the boys’ plastic surgeon, told their mother following the surgery.
And that’s OK with Arlene Aquirre.