A Medical Miracle Comes Of Age

By Nancy K. Crevier

Brendan LaMarche is a strong, wiry young man of 21, who graduated from Newtown High School in 2002. He rides his mountain bike, plays basketball and racquetball, and is pursuing a career in the computer industry with Elan Technology in Savannah, Ga. He leads an ordinary life, one that belies his extraordinary entrance into the world December 1, 1983.

Brendan was born at Stamford Hospital with congenital diaphragmatic hernia (CDH), a condition in which the diaphragm (the body’s major breathing muscle that separates the chest and abdominal cavities) does not form completely in utero. The gap in the diaphragm had allowed the lower abdominal organs to migrate to the left side of his chest, pushing the heart out of place and impeding development of the left lung.

He would have to have surgery, in which a cut from hip to breast would allow surgeons to put his organs back in place and to insert a false diaphragm made of Gortex.

In 1983, the present day mortality rate for CDH of 15 percent was much higher. Only eight other babies nationwide had survived the complications of CDH, and those babies had had access to the then-revolutionary ECMO (extracorporeal membranous oxygenation) support system.

The ECMO support is a form of artificial organs that mimic heart and lung function. It “breathes” for the baby while it oxygenates the blood, giving the baby’s underdeveloped heart and lungs a chance to rest. In essence, it puts the baby back in utero, “rebirthing” the baby when the heart is stronger and the body has begun to heal.

Like most of the approximately 10,000 babies born in 1983 in the United States with CDH, Brendan was unable to breathe on his own. He was rushed by ambulance to what was then known as The Baby’s Hospital at Columbia Presbyterian in New York City, where he was fortunate to come under the care of Dr Charles Stolar, and a support staff of nurses and other doctors. Dr Stolar had worked with one of the pioneers of the ECMO, Dr Robert Bartlett, University of Michigan (who retired in 2005), and a precursor of the modern ECMO support system was on hand at Columbia Presbyterian.

“Everything came together, it was serendipity,” says his mother, Marty LaMarche.

She had been scheduled to give birth at St Mary’s Hospital in Stamford, but due to overcrowding at that hospital, she was sent to Stamford Hospital. St Mary’s reciprocity is with Yale-New Haven Hospital, while Stamford Hospital shares reciprocity with Columbia Presbyterian. ECMO treatment would not have been an option for Brendan at either St Mary’s or Yale-New Haven 21 years ago.

The trauma of surgery was almost too much for baby Brendan. He developed persistent fetal circulation, a not unexpected side effect. As a fellow, Dr Stolar had watched many babies die from CDH complications at this point.

“We didn’t know what would happen if we used ECMO,” says Dr Stolar, reflecting on the experimental procedure from his office at Morgan Stanley Children’s Hospital of New York-Presbyterian/Columbia University Medical Center, where he is now chief of pediatric surgery and professor of surgery and pediatrics at Columbia University College of Physicians and Surgeons.

“There was a chance that he wouldn’t recover, that the brain would be damaged, that there would be a poor outcome,” Dr Stolar said.

But the experimental ECMO support, bearing a label that read “Not For Use On Humans,” was Brendan’s only chance. “The ECMO,” said Dr Stolar, “raised his chance of survival from zero to ‘maybe.’ He was dying.”

“Who wouldn’t take this chance, slim as it might seem?” is a question that comes to mind.

“All parents are different,” states Dr Stolar. “There might be a bad outcome, and some parents would say, ‘Let our son be at peace.’” When two years after Brendan’s miraculous survival parents of another CDH baby asked this pediatric surgeon to promise that their daughter would play the piano when she was 4, he had to tell them he could not do so. The family chose not to use ECMO. “We respect each family’s decision,” he says.

For Bob and Marty LaMarche, putting Brendan on the ECMO was an easy decision. They put their trust in the pediatric team of Doctors Stolar, Driscoll, Dillon, Barst, Wung, and Kiram. They would take the chance offered them to help their baby live.

Brendan was placed on the ECMO for five days. It had never been used at Columbia on a human baby before.

“The first week was touch and go,” says Mrs LaMarche. “Then there was hope in the second week, and then at the end of the second week, he was moved into semi-intensive care. It was the first time I was allowed to stay overnight with him [in his room]. I was frightened — he slept the whole night. I was awake the whole night,” she recalls.

What a nurse told her in the morning was a balm to her heart.

“She told me,” says Mrs LaMarche, “it was the first time he hadn’t cried all night.”

There were other scares, including a tachycardia attack (a racing of the heart), before Brendan came home, but on January 1, 1984, the LaMarches finally carried their child across the threshold of their home. He was on heart medication and they had been warned to watch for seizures, but already his left lung, the size of a pecan at birth, had started to grow and Brendan’s heart had begun to move back to its natural position in his chest.

Brendan became the first baby on the Eastern seaboard to survive the complications of CDH.

The long-term effects of being on the ECMO were not clear at the time Brendan came home from Columbia Presbyterian. The biggest concern was that the carotid artery, which had been tied off when he was put on the ECMO, might one day need to be reattached.

Until a meeting with doctors at Morgan Stanley Children’s Hospital of New York-Presbyterian, Columbia Medical Center this spring and the attention showered on him by members of the medical field in awe of meeting “ECMO One,” Brendan was unaware of the significance of his survival, say his parents, Bob and Marty LaMarche.

“I honestly had very little idea about my medical significance,” says Brendan. “My parents were told to raise me as if I was a normal child and that’s what they did. All I knew was that I had a surgery when I was born, but as to the details or severity, I didn’t know much.”

At a medical examination this spring, doctors at MSCH of New York-Presbyterian, including the surgeon who saved his life at birth, gave him a thumbs-up. “Meeting Dr Stolar and the many, many nurses who took care of me as a baby was amazing,” Brendan says. “It was a funny feeling to have everyone know you, but you don’t know anyone!”

Says Dr Stolar, “It was extraordinary seeing him [Brendan] as a young man. We’re not interested in five-year survivals, we’re interested in 100-year cures. We’re interested in saving whole lives. Seeing Brendan was a very special thing.”

He agrees with Mrs LaMarche that providence played a part in Brendan’s survival. At the time, other than Columbia Presbyterian, the only other ECMO was in Michigan and Pittsburgh. It was not until two years after Brendan’s birth that doctors from Columbia Presbyterian taught Yale doctors how to use ECMO. Dr Stolar says, “I think it’s safe to say that if Brendan had gone to Yale, he would have died.”

Today, about 130 to 140 children a year are referred to MSCH New York-Presbyterian/CUMC, and about 40 are treated with ECMO. While some of the children are CDH patients, the ECMO has found its place more commonly in the treatment of congenital heart disease.

Twenty-one years later, only faint scars that traverse his torso and shadowy marks on his scalp remain to remind Brendan of his brush with death and his place in medical history.

“He truly is a miracle,” says his mother.