By Stephen McKinley
A boy from Kilteely, near Shannon in County Limerick, has had a life-saving operation to remove a tumor from his brain in New York’s Beth Isr’l Medical Center, after his family had given up hope of finding help in Ireland or the UK.
The operation saved Thomas O’Sullivan’s life, but the cost of the best neurological surgery and care in the world has been proving prohibitive for his family.
Thomas, who’s 6, was first diagnosed with the tumor in August 1999, said his father, Pat. He and his wife, Adrienne, took their son to doctors and hospitals in Ireland and in the UK but were unable to find a surgeon expert enough to treat or remove the tumor that had established itself on his brainstem and spinal cord at the back of his head, a tumor known to doctors as an astrocytoma.
“They took it upon themselves, at huge expense, to get him to New York,” said a friend of the family at the Institute for Neurology and Neurosurgery at Beth Isr’l on East End Avenue and 87th Street in Manhattan. “They wanted Tom to survive, and he will. But the operation alone cost $55,000.”
Pat and Adrienne O’Sullivan were alerted to new hope in New York by an article in the Reader’s Digest about Dr. Fred Epstein, one of the world’s leading experts in neurosurgery.
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Tragically, Epstein, who established the INN for Beth Isr’l at a cost of over $30 million, was badly injured in an accident last September, and is himself a patient in the hospital. Though he will recover, he will never be able to operate again.
Enter Epstein’s colleague Dr. George Jallo, who saw Thomas and his parents when they arrived for a consultation.
“Tom was weak down his right side,” said Pat. “And he had trouble walking. He was walking with a walking aid, then he lost his walk altogether. Then Dr. Jallo looked at him, and he said he thought he could help, that he’d give it his best.
“Others had told us that there’d be terrible side effects, but my child returned home this Saturday. The use of his hands was poor before, but he’s actually feeding with his right hand now.”
The family have been staying with a friend, Tom Gleeson, in New City, Rockland County, for a month. Gleeson said that he has been trying to think of ways to help the family.
“The family needs help, it’s a long-term thing, now that the boy needs rehabilitation,” said Gleeson.
Although Dr. Jallo compassionately waived the fee, $12,000, for his surgery, the family still owes Beth Isr’l Hospital $44,000, and rehabilitation costs could amount to twice that.
Jallo was pleased with Thomas’s surgery, but warned that “he needs extensive physiotherapy.”
“The surgery took about five and a half hours and the tumor is a benign and very slow-growing tumor,” he said. “His prognosis should be excellent. I hope he will lead a normal life but may be slightly clumsy. There is still some residual tumor but these just need to be followed for the next several years.
“The tumor being benign meant that it was localized, but it was in the area of the brain called the medulla, that controls movement of the hands, feet, swallowing and breathing.
“It was easy to see the tumor tissue as different from the brain tissue. It was hard as rock and felt differently.”
Gleeson said that Thomas had been remarkably brave.
“When they showed him the video about the surgery, it was unbelievable, he didn’t even cry,” he said.
Yesterday at the INN, Pat and Thomas’s mother, Adrienne, brought Thomas to see Dr. Jallo for a check-up.
“He’s going to need an awful lot of therapy,” Adrienne said. “We’re waiting to find out about the therapy back in Ireland.”
She explained that the family now has a number of options including seeking therapy back at Dun Laoghaire in Ireland, but there could be a waiting list of a month. Meantime, Thomas continues to receive physiotherapy at Beth Isr’l three days a week.
“People have been very good to us here,” Adrienne said, “from accommodation to driving us in and out [of New York City].”
“Dr. Jallo called us all the time after the surgery,” added Pat.
“Ideally, we would give Tom better physiotherapy here,” Jallo said. “But it could cost the family maybe $100,000. I waived my own fee to perform the surgery once I realized that the family did not have insurance for the operation.”
Said a family friend at Beth Isr’l, “as far as I know they had to sell their house to come here. We’ve been trying to raise money somehow, to help them,” she added.
Anyone wishing to donate to the O’Sullivan family can send donations to The Thomas O’Sullivan Fund, 236 East 83rd St., New York, NY 10028.
For further information on the Institute for Neurology and Neurosurgery, its pediatric division and the treatment and care that it offers, contact Eileen O’Donnell, assistant director of the INN Foundation, at (212) 870-9693 or www.nyneurosurgery.org.