Through the Looking Glass

BY ROBERTA FRIEDMAN

FALL 2004 -- Gage Biggs is too small to understand how much his parents wanted him. But he knows that his mother is holding him. His heart rate steadies as he places his palm on her warm chest.

That palm is barely the size of a quarter, but his mother is proud to acknowledge the long, skinny fingers that reflect the qualities of her own. "They are mine," Gaylene Biggs says, smiling over the huddled, blanketed baby whose back is easily covered by his father Jason's caressing hand.

Part of the Family: Jason and Gaylene Biggs look at their son, Gage, through the plexiglass of his isolette as he lays sleeping. NICU nurse Kathy Foley, R.N., (far left), who oversees his care, has gotten to know the family well.

Born at 28 weeks gestation at just past two pounds, Gage is now 19 days into his stay in the neonatal intensive care unit (NICU) at Lucile Packard Children's Hospital. His parents passed through an unbelievable series of medical adventures in the effort to conceive and bear this child, whose tiny life is undeniably a modern miracle. Gage himself already has weathered a couple of bumps in the road.

The pregnancy was high risk from the start. Gaylene required surgery to enlarge her uterus so that an embryo could implant and grow. The surgeon, Gaylene says, "made up the surgery for me.We had no idea if it would work or not, and they didn’t know what to expect."

At eight weeks after Gage was conceived, miscarriage threatened. Gaylene went on bed rest. After things settled, she tried to resume normal living. She was cared for through the Johnson Center for Pregnancy and Newborn services at Packard. The center coordinates continuity of care for mothers and their newborns. At 17 weeks, investigation showed that Gaylene's cervix was already two centimeters dilated, and "the amniotic sac had funneled down," she says.

Jane Chueh, M.D., an obstetrician at the Johnson Center who specializes in high-risk pregnancies, performed a stitching procedure, called cerclage, to tighten the cervix. For the procedure, Gaylene was positioned practically upside down, and the surgeon literally had to push one of Gage's feet back into the womb.

Gaylene's water broke just shy of 28 weeks gestation. Jason recalls that by the time he had the car parked, after dropping Gaylene at the hospital entrance, her care was under way by a team of Packard specialists. This immediate response prolonged the pregnancy by another crucial week, giving Gage a few more days and ounces gained in utero, and prepping his tiny systems to enter the world, breathing on his own. He had a healthy cry at birth. Gaylene remembers the doctor who delivered him by C-section saying, "This little guy has an attitude."

Small but Strong: Unlike many babies his size, Gage was born without any major respiratory problems or other serious issues.

To parent a newborn in intensive care is a true challenge. There are no celebrations, no balloons; instead, your baby is one among 16 or so housed in a double row of incubators, surrounded by monitors, medical personnel, and other anxious families. "I got to see him after I recovered from the C-section," Gaylene says. "They wheeled my whole gurney into the NICU, and opened up one of his little doors. I was so overwhelmed by how tiny he was… despite what I had been told. I was flooded with feelings of guilt."

Jason remembers that William Benitz, M.D., had just begun his monthly rotation in the unit. "He said to Gaylene: 'You did a great job.You gave us a lot to work with.' They knew how to make you feel okay about having a preemie."

Gaylene says, "It's kind of like parenting through the looking glass, it's very surreal right now. I'm worrying about how little he is, and how he'll catch up to other kids. But in the scheme of things, I'm just happy he is here."

Both parents say they cried when they first got to hold their child. They know how lucky they are. "At first, we were chatty" with other parents in the NICU, says Gaylene, but the stress catches up. "The stories are so devastating, I couldn't take it. We've seen some babies die."

Fortunately, Gage was not born with any major respiratory problems or other issues.He is simply too small to live easily outside the womb. He is spending what should be his third trimester in the NICU. Other babies there may have serious defects in their anatomy or underdeveloped systems that require intricate surgeries. Or, they are even smaller and frailer than Gage, and may have contracted an infection or other complications. Many children leave the NICU with uncertain futures. Many experience developmental delays or disabilities.

Gaylene and Jason say they will be able to relax and socialize better after their baby takes the step up into the intermediate care nursery. A space has to open in that crowded nursery. Also, Gage must breathe and feed reliably, and cease to experience slowed heartbeats and lowered oxygen in his bloodstream.

Gage is strong enough to flip over his tiny body, and constantly tries to yank out his feeding tube. "He is probably one of the feistiest babies in the NICU," the parents boast.

Proud Parents: Tiny Gage peers up at mom and dad.

The family lives a half hour away in Mountain View. Jason is a lawyer, and Gaylene used to work in high tech. They are with Gage each day. Gaylene comes in around noon, and takes a break when shifts change. Jason joins her by 6 p.m. Often they will stay until 10 at night.

NICU staffers encouraged the couple to enlist Gage in ongoing studies. The family is participating in two projects, one to determine the best way to use therapeutic lighting to stave off jaundice, common in newborns and all the more so in premature infants. Also, the family is part of a study of breast milk feeding for babies born prematurely, looking at nutrients and digestive ability.

Gage gets his mother’s milk courtesy of a tube through his nose down to his stomach. Preemies his age simply cannot coordinate breathing with suckling and swallowing. His breathing itself has sometimes caused concern. He did spend half a day on a ventilator, and some time on CPAP, a machine that helps keep the lungs inflated properly with positive pressure. Supplemental oxygen also has been part of Gage's care.

A few days back, the baby took a turn for the worse. Apparently Gage was not producing enough red blood cells. A transfusion was started. "He was going downhill," Gaylene says, "All the tubes, his eyes were swollen shut – I took one look and sobbed uncontrollably."

Now Gage is back to his old tricks, pulling on his feeding tube. "We are extremely lucky he is doing so well," Gaylene says.

Gage will graduate soon to the intermediate care nursery. He will grow, gain weight, and go home. His parents will send him off to school, and to summer camp, and they will likely forget, more often than they now can believe would be possible, how his earliest days came courtesy of the best that medical science today has to offer.