Innovative medical procedure on blood vessels in baby’s head gives parents ‘best Christmas present ever’
By Anita Srikameswaran
Pittsburgh Post-Gazette
Copyright 2006 P.G. Publishing Co.
The innovative repair of a rare blood vessel malformation in his brain allowed 1-year-old Kade Casteel to celebrate Christmas for the first time with his older sisters at home near Baton Rouge, La.
His father, John, told Dr. Michael Horo-witz, director of neuroendovascular surgery at the University of Pittsburgh Medical Center, “You gave us the best Christmas present anyone could. You gave us a healthy child we can take home.”
Last year, Kade spent the holidays at Children’s Hospital, recovering from initial treatment of the congenital abnormality that had pushed his heart to the brink of failing.
His story begins with his birth on Nov. 29, 2005. For the first three days, he appeared to be fine.
“On the fourth day, when I was on my way to pick him up and bring him home, the pediatrician listened to his heart and didn’t like what he heard,” his father said. A cardiologist was brought in.
The doctors discovered that the pressure in Kade’s lungs was too high, and they began treating him for primary pulmonary hypertension. But after five days, the baby was no better. He was transferred to a pediatric hospital in New Orleans for further treatment.
After six days, Mr. Casteel said, Kade’s brain was scanned as a routine precursor to an intervention called extracorporeal membrane oxygenation, or ECMO, which doctors were considering to support the boy’s weakened heart and lung function.
The brain scan revealed the real problem: Kade had what is called a vein of Galen arteriovenous malformation. The arteries were abnormally connected to the veins, with no capillaries between them to reduce blood pressure and volume. Blood returned to the heart under high pressure, forcing the pump to work harder and harder to meet the unending demand from the brain vessels.
As Dr. Horowitz would later explain, “It’s like trying to empty out a sink, and as you’re emptying the sink, somebody is pouring more water in. Eventually you get tired of emptying it and it overflows.”
Kade’s heart was failing under the strain. His parents were told it was likely the baby had already suffered brain damage and nothing more could be done.
“That just scared the daylights out of us,” Mr. Casteel said. “When a doctor tells you to prepare for your baby to die, that’s not something you want to hear, especially when he’s 2 weeks old.”
The worried dad called his own mother, a hospital administrator in Lafayette, La. She called a neurosurgeon in New Orleans who suggested contacting Children’s Hospital in Pittsburgh. Children’s, in turn, referred the family to Dr. Horowitz, who treats perhaps one or two youngsters for the condition each year.
The condition occurs in fewer than one out of 100,000 people, he estimated.
Kade was flown here by medical helicopter. Once here, critical care experts worked carefully to stabilize him. At one point, he had seven pumps pushing medicines into him to keep him alive, his dad said.
In a procedure that he repeated daily for the next several days, Dr. Horowitz guided special catheters through the blood vessels in Kade’s groin up to the vein of Galen malformation in his brain.
He deposited hundreds of platinum coils into it with the aim of creating resistance to the torrent of blood flowing through the abnormal connections.
“We put a Mercedes in his head for what those coils cost,” Dr. Horowitz wryly noted. With time, Kade’s doctors hoped, scarring would further close off the connection. And, instead of taking the path of least resistance, blood would flow more readily to other parts of the brain.
The procedures eased the considerable burden on Kade’s heart, and he was weaned off the ventilator that had been assisting his breathing. In mid-January, he was transferred to the Lafayette hospital, where his grandmother works, to continue gaining strength.
Kade was home by the time he was 3 months old, and he continued to develop normally. He smiled, crawled, stood up, and took baby steps. His brain seems undamaged by the ordeal.
“He is a very happy-go-lucky baby,” Mr. Casteel said. “Not much bothers him.”
A couple of weeks ago, though, a cardiologist noted that Kade’s heart rate was higher than usual. His father called Dr. Horowitz, who was concerned that Kade’s heart might be working too hard again.
Within days, Kade was on his way back to Children’s Hospital. Tests showed the malformation was still there, as Dr. Horowitz had expected it would be.
He recommended doing the coil insertion procedure again, but with a twist. He would also fill the vessels with a material, called Onyx, that turns from liquid into solid when it mixes with blood.
Dr. Horowitz had used it before to treat other kinds of arteriovenous malformations, but not for vein of Galen defects. Kade’s parents decided to try it.
By the end of the procedure, the abnormal blood-flow pattern was gone, the doctor said. He added that Onyx might not have worked in this situation without the coils, which acted like rebar holding concrete together.
Still, Dr. Horowitz told Mr. Casteel at the time, “We’ve either hit a home run or he may get really, really sick.”
For the next two days, Kade was watched closely for bleeding into his brain. But after a bout of pneumonia, he was clearly on the mend.
The boy will probably be 5 or 6 years old before Dr. Horowitz sees him again for a checkup, sooner if heart problems resurface. But the doctor doesn’t expect that to happen because, he said, “I think it’s completely treated right now.”
Last week, the Casteels returned home, joining daughters Serena, who turns 4 in March, and Jordan, 2, who had been staying with their mother’s parents.
The older girl explained it simply to her sister, who was upset while their parents were gone.
She said, “Mommy and Daddy took Kade to Pittsburgh so he can get his head fixed. They’ll come home when he’s better.”