For 14-month-old Hamburg girl, a dialysis machine is part of the nursery
Buffalo News
Tuesday, April 22, 2003
Section: LIFESTYLES Page: D1

Kelly Northrup carried her baby daughter into the bedroom, thinking that on this night her little girl would sleep easily alone among the Winnie-the-Pooh cutouts on the wall and the shooshing of the dialysis machine.

Her daughter should be tired after a busy afternoon. At the church fair, people had admired Bryce in her pink flowered one-piece. Just in case people asked the usual questions about why she is so small, Northrup had a packet of brochures for a kidney fund-raising walk in the diaper bag. But no one did, and she had pushed the stroller and thought of other things. She wished she could buy the big chocolate bunny her son kept gazing at.

Going out broke was better than sitting home crying and worrying, as she has for a lot of the 14 months that her daughter has survived with kidneys that don't work.

This has given Northrup's life a new purpose: Keeping Bryce alive and making people understand why a small sick child isn't strange. She's ready with answers. "Well, she has kidney failure," Northrup will say. If they're interested, she continues, "It happens to all types of kids."

As she readied the machine for its evening cycles, her girl, who still cannot talk, walk, stand or crawl, lay quietly. Northrup, who feels sure her daughter will one day catch up to others her age, took off the diaper Bryce doesn't need.

A baby without one seems weird. "Silly willy," Northrup said, putting her face close and smiling before opening a new package of plastic tubing that sends sugar water solution into Bryce's body to pull out the toxins.

Bryce, usually calm and content, sucked her pacifier and kept her brown eyes open and solemn as she pulled a fabric Pooh picture off the wall and let it drop to the floor.

Northrup didn't know a thing about her baby's troubles until two days after she was born Feb. 19, 2002, at Mercy Hospital. Early one morning Northrup sat up in her pajamas, waiting for a nurse to bring Bryce in for breakfast.

A doctor came instead. An X-ray had found a stomach blockage. Bryce had to be rushed to Children's Hospital, and, a nurse told her, Northrup couldn't go in the ambulance.

"I'm her mother and I've got to protect her, and if I'm not there how am I going to protect her?" she remembers thinking.

Before she left with her husband, Bryen, a chaplain sat on the bed with her. "Our prayers are with you," he said, and Northrup wondered: Did they send him because her daughter was going to die?

Finally, after having a son at 16, this mother, who was now 28, had given birth to a little girl. She had hogged her those first two days, hating to hand Bryce over to the sisters and parents and friend who came visiting.

Her daughter seemed so perfect. A little girl would be daintier than a boy, she imagined. Not so rough and rugged as her son was. There was sweet fun of buying frilly girl clothes in pink and purple. One day, they could go to the hair salon together.

When Northrup first saw her daughter's soft brown hair, she cried, she was so happy. The sudden emergency at the hospital didn't make sense.

As her husband drove her to Children's, saying over and over that everything would be fine, Northrup was doubtful. "Maybe she's going to die," she thought. Then, "She's going to die without me being there."

One of the worst things about that morning was the broken elevator in the hospital parking garage. Northrup walked four flights of stairs, bent over, trying to go faster while the Caesarean slice across her stomach gave out sharp pains.

The bad news

In the early evening after several hours of surgery, a surgeon finally explained what was wrong: Bryce's small intestine had never connected to her colon. He had attached a small colostomy bag to Bryce's stomach to catch her body's waste.

After the operation, Bryce passed no urine even though Northrup could remember changing a wet diaper at Mercy. Soon nurses stopped letting friends and family visit.

Northrup's sister Amanda, a senior in high school, stopped going to class and kept a concerned watch from the waiting room. She'd been so excited about the birth -- her three older sisters had boys mostly -- that she spent $600 on clothes and a silver picture frame that played music.

In the intensive care nursery, only parents were allowed. Other babies there were worse off than Bryce, Northrup thought then. Some were hooked up to a lot more machines, with alarms that kept going off.

An encouraging doctor said there was no good reason for Bryce's kidneys not to start up. But after 10 days, her body swelled. Dr. Wayne Waz, the kidney specialist, said perhaps the surgery had been too much of a shock.

He decided Bryce had to be hooked up to the hospital dialysis machine. Six weeks passed and Bryce still wasn't ready to go home. Northrup's pregnancy disability checks ran out. She called to quit her job. She hated to do it.

She'd worked at a pizzeria, finished an associate's degree and found a job at North American Health Plans. She started out in customer service, was promoted to claims analyst and bought her first good car, a black Ford Escort with purple and green pinstripes.

But Northrup now had to go to Children's every day. She stayed 12, 14 hours, holding Bryce and reading stories from a book about animals.

While she was with Bryce, Bryen was the one at their mobile home in Hamburg caring for her son and their three dogs, the two tanks of fish, the guinea pig and the lizard. "He was the greatest person on this earth," she said, remembering.

Sleepless nights

At the hospital, nurses trained Northrup to be a nurse for her daughter -- the kind of job she had once ruled out in high school. Back then, she didn't want the responsibility for someone else's life.

Now for this baby girl whom she hoped to one day take shopping for a prom dress, she learned how to use the cycler machine, a home method that about 40 percent of dialysis patients use.

The gray plastic box in Bryce's bedroom warms bags of solution, pumping it through a tube that connects to another tube fixed to Bryce's belly, opposite her colostomy bag. The clear liquid in her gut absorbs toxins and then flows back out the tube. The machine repeats the process eight times, 10 hours a night, beeping when cord kinks interrupt the flow.

On the Sunday evening after the church fair, Northrup turned on the Pooh night light, wound up the Pooh music box mobile, closed the bedroom door and took the baby monitor.

Such vigilance has kept her awake nights since Bryce was born. "I will sleep when she is grown," Northrup said.
When her baby came home at 2 months, Northrup had so many new duties that she made a list of them on a clipboard chart to track "what goes into her, what comes out of her." She doesn't want to miss any medicine or temperature, blood pressure and weight checks.

Her 12-year-old son Anthony is vigilant, too. He fetches tissues and the pacifier as soon as his mother asks. When he gets pudding for himself, he pulls out a container for Bryce, even though she's never hungry enough to eat the whole thing.

When Bryce cries, he takes her in his arms, giving her up with matter-of-fact resignation when she doesn't stop. "Mommy's girl," he says as he hands her over and she quiets.

Bryce smiles often, in spite of everything, and this makes them both proud. "I have come to accept what she is and how she is," said Northrup. "To me, she is extremely perfect."

Their care also could be a kind of coddling that Northrup believes might explain why her daughter doesn't walk or talk.

To encourage independence, Northrup pushed the crib and machine out of her bedroom and into a room she painted hot pink the day her husband moved out a month ago.

This is where she comes on this Sunday night after the fair, after an hour of listening to her daughter cry off and on. It's clear that Bryce won't fall asleep by herself tonight.

Accepting life

Northrup sets the couch cushions along the floor, settles on them and holds her daughter. When she closes her eyes, she goes over her marriage, trying to figure out what went wrong. Northrup knew her husband was unhappy, but still doesn't quite understand why he left.

There was no time to cook together like they did when they first met and fell in love three years ago, with him grilling the steaks and her boiling side dishes of frozen corn.

Bryen Northrup declined to be interviewed for this story.

His wife has come to accept his departure, just as she accepts her daughter. "I'm not going to let this make me a loony-bin psych case," she said.

While insurance takes care of Bryce's expenses, Northrup has started baby-sitting, cleaning houses and selling Avon and Tupperware to pay the rent, electricity, phone, car and car insurance bills that are late. To help more, her friends, who come to drop off bags of groceries, are planning an August benefit at a banquet hall on Southwestern Boulevard, down the road from her trailer park.

She also joined a gym to get herself out of the house. She wants to lose weight, but it is her daughter's size that matters more.

Six more pounds measured on the bedroom's hospital scale, and Bryce will weigh 20. Big enough for a kidney transplant that would give Northrup the freedom to get a job again.

For now, the cord of lifesaving liquid stretches to her daughter. She sleeps soundly on her mother's chest. Northrup drifts in and out to the quiet sounds of the cycler, which always reminds her of the constant gear-changing, humming and swooshing of a carnival ride.