Lucas Stisher doesn’t want to go to bed.
The mere suggestion from his mother elicits a panicked wail familiar to anyone who has tried to coax a young child from playtime to bedtime. It echoes through the family room of their Bethesda home, almost drowning out the tinny melody of the toy Lucas was playing with moments earlier.
Amid the chaos, Lucas’ parents beam. It wasn’t long ago that doctors were telling Angie Lucas and Bran Stisher that their son, born more than three and a half months premature, would never be able to talk or feed himself, much less mount a successful resistance to bedtime.
Other parents might see this as a moment for discipline. For now, Angie and Bran view it as they do the rest of their 3-year-old son’s life: as cause for celebration.
Angie Lucas’ pregnancy had progressed normally in early 2007. She and Bran knew they were having a boy, and they had picked out a name, Lucas James. Then, one morning during her 22nd week, Angie called Bran at work to tell him something felt wrong.
She visited her obstetrician, who detected amniotic fluid, meaning the sac holding the baby inside the uterus had broken too soon, a condition known as spontaneous premature rupture of the membranes. The cause of the condition, which accounts for many premature births, isn’t fully understood.
Angie was sent immediately to the hospital. In the middle of her second trimester, she was facing the possibility of giving birth.
Typically a pregnancy lasts about 40 weeks. But one out of every eight babies in the United States is born prematurely, or before 37 weeks, according to the March of Dimes, a charitable organization that aims to improve babies’ health. And those born before 23 weeks have a greatly decreased chance of survival, the organization says.
Doctors asked Angie and Bran if they wanted to induce labor to “speed up the inevitable,” essentially ending their child’s life. For the first of many times, they told doctors they’d like to hang on if Lucas stood any chance of survival.
“We sort of never questioned that,” says Bran, now 40. “We just kept moving forward from one day to the next.”
After three weeks of closely monitored bed rest, Angie started having contractions. Doctors determined that Lucas would be safer outside the womb, and Angie delivered via C-section.
Lucas James Stisher was born on March 27, 2007. He weighed 1 pound, 6 ounces, and was 12 inches long. Each of his feet measured 1 inch.
Rather than the sound of their new baby crying, Angie and Bran heard the chatter of a small army of doctors and nurses working on him, then the rush of them speeding their son out of the room.
Doctors had warned Angie and Bran that Lucas would be tiny, and that he’d breathe with a ventilator and eat through a feeding tube. Bran, who caught a glimpse of Lucas as doctors were working on him, says nothing could have prepared him for the sight of his son. His eyelids were fused together. His skin was thin and red, his limbs spindly.
“I was expecting him to look like a newborn baby, just really small,” Bran says. “But he wasn’t a mini-baby—he was a fetus. He was like a newborn bird just hatched out of an egg, with translucent skin. He obviously wasn’t supposed to be out in our world yet.”
Thus began a 156-day tightrope walk between life and death in the neonatal intensive care unit, or NICU. Angie describes it as “a constant roller coaster of hell.”
One day, Lucas would open his eyes or breathe without a ventilator. The next day his heart rate would drop dangerously low, and doctors would intubate him and perform CPR.
Bran remembers sitting by Lucas’ incubator when the machines monitoring his son’s vital signs started bleating. Nurses yelled for help, and Bran stood back and watched as a crowd of medical professionals worked to save Lucas’ life.
“It was like an out-of-body experience,” Bran says. “I just kind of stood there in shock.”
Angie and Bran both work in software sales in Northern Virginia, but they spent hours every night at the D.C. hospital treating him. The only contact they were allowed to have with their son was to gently place a gloved hand over his body—rubbing might overstimulate him, and touching him skin to skin could tax his almost-nonexistent immune system.
“You’d want to comfort him, but just touching him the wrong way could cause him harm,” says Angie, now 38.
Throughout the ordeal, Angie prayed that Lucas’ brain would remain unaffected. But in May 2007, she and Bran learned their son had suffered a stroke that had destroyed a column of tissue on the right side of Lucas’ brain. That left him with hydrocephalus, a buildup of fluid inside the skull that could lead to brain swelling and make him susceptible to developmental delays and cerebral palsy.
Doctors asked them to sign a “do not resuscitate” order. For the first time, Angie asked Bran if it might be best to let Lucas go. “Our world fell apart,” Angie says. “It’s the hardest I’ve ever cried in my life.”
But they decided to hang on. Again they told doctors that if Lucas had any chance to beat the odds, they’d like to try.