Medical Mysteries

Child's Breathing Problem Couldn't Wait Six Months

By Sandra G. Boodman
Special to The Washington Post
Tuesday, December 16, 2008

From his hotel room in Kansas, 1,000 miles from his Northern Virginia home, Jason S. Nelson, a human resources manager on a three-week business trip, struggled to control the helplessness he felt listening to the panic and exhaustion in his wife's voice.

"Something is really wrong," Anna Nelson told her husband during one of their increasingly frequent telephone conversations in April 2005. For the previous two weeks, Anna Nelson had been administering breathing treatments round-the-clock to 4-month-old Matthew. Their son had been battling an asthma-like condition for several weeks, the aftermath of a cold he caught from his 2-year-old brother, JJ.

Anna Nelson had shuttled the baby to the pediatrician's office every few days, seeing a different doctor in the large group practice each time. But Matthew seemed unimproved, even though blood tests found nothing wrong and a chest X-ray had shown no sign of pneumonia, only a heart that was slightly large but within the normal range.

The pediatricians didn't seem worried that the nebulizer treatments weren't working. At Anna Nelson's request, they had referred the baby to a lung specialist whom they could not afford because he did not accept the family's insurance. Now the triage nurse was balking at calling a specialist at Children's National Medical Center, which was in their health plan. Without a referral, Anna Nelson told her husband, the wait for an appointment was six months -- and Matthew couldn't wait.

Jason Nelson assured his wife he would handle it. After a tense exchange with the pediatrician's office, Matthew was given an appointment at Children's Hospital's outpatient clinic in Fairfax the following week.

It was Jason Nelson's insistence and Anna Nelson's instincts, coupled with a serendipitous appointment on a day that the hospital's chief cardiologist, Gerard Martin, happened to be seeing patients at the Fairfax office, that helped avert almost certain catastrophe. In an unusual coincidence, Martin had diagnosed the same problem in his own nephew: a malady so rare and lethal it is typically discovered during an autopsy.

Until that day, Matthew, born at Inova Fairfax Hospital, had seemed like a pretty normal baby. He went home three days after his November 2004 birth, a day later than normal because he had had a seizure during circumcision. Doctors kept him for observation and decided the seizure was probably a reaction to the anesthetic.

"He was fine, a healthy baby," his father recalled. But unlike his brother, Matthew seemed to cry uncontrollably beginning at about 1 month. "He was really inconsolable," said Jason Nelson, who was home with the baby at the time. "I thought maybe he missed his mother."

Their pediatrician thought the incessant crying might be caused by acid reflux and prescribed medication. After several weeks, the crying largely ceased.

When he was 3 months old, Matthew began wheezing. The pediatrician diagnosed bronchiolitis, an inflammation of the small passages in the lungs caused by a virus. Bronchiolitis can be a precursor to asthma, which is common in Anna Nelson's family. The doctor told her Matthew would probably have the airway disease when he got older and prescribed medicine to be administered in aerosolized form through a nebulizer. She told Anna to bring Matthew back if he didn't get better.

Several pediatricians and changes of medicine later, the Nelsons were sent to the hospital for blood tests and a chest X-ray. The radiologist noted that the baby's heart was slightly enlarged, a finding that disturbed Anna. Doctors, she said, assured her it was nothing to worry about.

Her husband departed on his long-planned business trip, and Anna was left at home, juggling an active 2-year-old and a sick 4-month-old who seemed to be getting worse: Matthew wasn't interested in eating, he wheezed continuously and she was trekking back and forth to the pediatrician every other day.

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