Medical Mysteries: A tiny baby who didn’t grow

Washington Post (August 29, 2011)- Right away the obstetrician knew that something was very wrong.

Morgan McElhinney weighed just over five pounds and had a head that was abnormally long and narrow. Her muscle tone was worrisomely floppy, and her cry unusually weak. Doctors at Frederick Memorial Hospital let Lisa Simonson McElhinney hold her newborn briefly before whisking her off to the neonatal intensive care unit.

“I didn’t see her much for a few days,” recalled McElhinney of the period immediately following the birth of her fourth child, in June 2002. After nearly a week in the hospital the baby was sent home, although no one could say what was wrong. Initial tests found no obvious cause, such as a metabolic disorder.

“We were scared,” said McElhinney, who manages apartment buildings in Frederick. “You try to be optimistic and say, ‘Maybe she’s not that bad, maybe she’s just really early and will grow out of it.’ Even the professionals tried to be optimistic” at first, she said.

More than five years would elapse before McElhinney and her husband, Brad, learned the reason for their daughter’s problems. That knowledge brought a fresh wave of grief that rocked McElhinney and drew her to a new endeavor aimed at helping other families.

The first sign something was amiss, said McElhinney, now 46, came just before she went into labor, when the baby turned from the foot-first breech position to the proper head-down position.

That seemed odd: There shouldn’t have been enough room for the baby to shift so dramatically this far along in the pregnancy. Maybe, she thought, the baby was coming earlier than expected — a month, instead of the two weeks the doctor had calculated. She was not alarmed; McElhinney had three older children from a previous marriage ranging in age from 7 to 16, and this pregnancy, like her earlier ones, had been uneventful.

Morgan’s low birth weight — 5 pounds, 3 ounces — was one of the first shocks, said McElhinney, who is 5-foot-10 and whose older children had weighed about eight pounds at birth.

After a few months, it was clear that Morgan’s problems were more serious than anyone anticipated. “We fed her and changed her, and that was about it,” McElhinney recalled. “She didn’t respond to any of us,” and her limbs were “like jelly.” McElhinney and her husband worried that she might have autism, a fear that escalated as she grew older and began making odd, repetitive flapping movements with her hands.

Morgan’s failure to gain weight was equally worrisome and prompted a referral to the first of many specialists, who had no answers. At 7 months, when she had not rolled over, which some babies do when they are a few weeks old, Morgan began early intervention therapy under the auspices of a state program.

Around the same time, McElhinney’s hopes were briefly buoyed. Doctors discovered that Morgan was severely nearsighted. “Vision is so important to development, so we hoped once she got glasses that would help,” McElhinney said. But seeing better didn’t seem to make much difference.

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