precious miracles

Oriah Valenti is one of the babies being cared for by the NICU staff at Peace River Hospital. The specialty unit has stabilized and sent home 200 babies since it opened 18 months ago. J OY PIGHINI STEPS TOWARD KENDRA BACK like a pilgrim come to Jesus, her first name now as appropriate as it’s ever going to get in this life. The new mother is literally glowing — with joy. Today, she and her family are going home.

“Can I have your cell phone number?” she says breathlessly.

“Got it right here,” replies Ms. Back, a nurse in the Neonatal Infant Care Unit of Peace River Regional Memorial Hospital. With her peers in the NICU, she specializes in helping babies born prematurely, or those born at any time with troubling medical problems that require extraordinary care. Ms. Back appears to be glowing with a significant measure of joy, herself.

“I might have a lot of questions. It’s nice to have somebody to talk to when you’re scared,” adds Ms. Pighini, her voice trailing off. Having recently escaped those frightening hours and days in which the outcome remained uncertain — and three weeks after giving birth to a little boy — she trembles as she says it.

“24-7,” says Ms. Back, as crisp and unhesitating as a platoon sergeant. A 14-year nursing veteran, she’s spent the last nine years of her professional life in NICUs both in Kentucky, her home state, and in Florida. She shows no hesitation.

“Call us anytime, in the day or the night, if you have any questions. ANY questions,” emphasizes the man standing behind the nurse. “We WANT you to call us. OK?”

A stethoscope is casually draped around his neck. His comment is punctuated by the nodding heads of three other nurses in the room, clearly a circle of angels, at least in the eyes of Ms. Pighini. The man is Dr. Jignesh Patel, a neonatologist. He heads the new seven-bed Level II NICU staffed by about 10 intensely devoted professionals.

COURTESY PHOTO Neonatologist Dr. Jignesh Patel urges parents like Michael and LaToya Valenti to call day or night with questions when babies such as Oriah, pictured here, are released from the NICU. Here, any baby with a chance of survival, some as young as about 24 weeks, can be stabilized and saved. Once that happens, the tiniest children or the ones with the most life-threatening maladies are usually moved to a Level III unit at All Children’s Hospital in St. Petersburg, with which Peace River Regional is affiliated. At All Children’s, a much larger staff of specialists can provide them with a wide range of sometimes-rare care skills — pediatric neurology, pediatric cardiology, pediatric ophthalmology and other specialties.

But Charlotte County infants who start life at about 30 to 32 weeks, or weighing no less than 1,000 grams (about 2.21 pounds), are nurtured here in state-of-the-art artificial wombs for as long as it takes to prepare them for the world outside, whether it’s a day, a week, a month or longer.

In the case of Ms. Pighini’s baby, little Evan Howes, that proved to be a difficult three weeks — a trying and troubling period for the mother and for Evan’s broadly smiling father, Wes Howes.

“Thank you,” Mr. Howes says repeatedly to everyone in the room. “Thank you. Thank you very much.”

Youthful, behatted and bejeweled, Mr. Howes has now weighed anchor in the great sea of parental duty. He secures his son’s cradle tightly in his arms like a ship securing a lifeboat, with Evan swaddled at its center. He is unable to stop grinning.

Jubilation and worry

A lot of people in Charlotte County are probably now grinning in the same way, too. The Peace River NICU first opened its doors less than 18 months ago. In the last year alone its staff has welcomed, stabilized and sent home about 200 babies.

In that time, they’ve never lost a single newborn, although the experienced staff is intimately familiar with the face of mortality.

“We’re all human, and sometimes what we see here hurts. But we’re also professionals, and we have to put our feelings aside and do the job,” insists nurse Susan Phillips, who has put 22 years into the business of helping babies.

“The way I see it, some babies just need to go home to God — they just don’t work,” says Ms. Back. “If it’s less than 24 weeks, unless you have weight on your side, it can be cruel (to save them). I had one baby who was born at 22 weeks, and the parents got to see it turn black and die. Nobody needs that.”

Ironically, bringing 200 babies safely through the NICU in a year is cause not only for jubilation, but also for grave concern, says Dr. Patel.

“We shouldn’t be having this many babies given the population in Charlotte County,” he explains. “It’s more than we estimated we’d have when we opened. I think Charlotte County’s drug-addiction problems are becoming evident here — they’re more acute than they once were, years ago. Also, new technology can help more children, and it may be that we’re more aware, and more responsive.” Babies who inherit drug problems end up in the NICU whether they’re premature or not.

As the day unwinds, the doctor and nurses, along with a specialist or two who wander in, tend to the four babies already in the unit. Monitors on each can sound out with as many as 10 or 12 beeps, whistles, rings or alarms, each designed to sound out a note with particular meaning in the symphony of care. A pair of beautiful twins are just learning to breathe on their own, for example, and to maintain their own body temperatures without help, but when they can’t, the music plays and the nurses respond.

The NICU staff is also preparing to bring in three more infants later in the day. By nightfall, the unit will be full.

One of those soon to arrive is a baby born the previous day in the maternity ward, at nearly full term. But a couple of telephone calls to Dr. Patel from staff members on that ward reveal that the baby’s mother has been ingesting a potent illegal drug, and the child, also now addicted, is showing the first difficult symptoms of withdrawal. Thus, the baby is about to transfer to the NICU, for acute care.

“We start with a special scoring system that measures what’s happening (physiologically) with the baby. That takes us through detox,” the doctor says.

One of the tricks of good care is recognizing mothers addicted to such potent drugs as heroin or crack cocaine or methamphetamine before they give birth — preferably long before they give birth — and convincing them to enter a government-sponsored program that provides methadone until they deliver their children. The program then requires them to kick the habit if they want to keep the child, Dr. Patel says.

“Taking methadone is better than taking something else,” he adds. “It’s not that the baby won’t have to go through detox with methadone, but we’d rather have that happen than have to detox from another drug.”

The downside from the point of view of some parents is the legal responsibility medical professionals have to call in the state Department of Children and Families when illegal drugs affect babies. Delivering an addicted baby is a good way to lose it.

“That’s as it should be,” says Dr. Patel. “But some people try to beat the problem by not seeing an obstetrician or gynecologist while they’re pregnant, and then getting a legal prescription for something just before they give birth — something that can disguise their addiction. We know what’s happening, but we can’t always prove it.”

Care from the heart and the head

Whether in that case or any other, however, “we worry about the complete safety of the child,” adds Dr. Patel. “When we release them, we’ve made sure the parental education level is appropriate.”

Parents taking babies out of the NICU have studied CPR. They know about Sudden Infant Death Syndrome and Shaken Baby Syndrome, among others. And they’re ready for the task ahead.

In the case of Joy Pighini and Wes Howes, and their baby Evan, doctors could not get his pulse to drop below about 200 — dangerously high — and they couldn’t figure out what was wrong.

He arrived first in the NICU at Peace River Regional, but when the pulse wouldn’t go down, he ended up at All Children’s in St. Petersburg, accompanied by his frightened, discouraged parents. No one was able to discover the problem, in spite of numerous tests and close observation.

Dr. Patel, meanwhile, continued to communicate with the family.

“Communicate, communicate, communicate,” he says. “The main thing is communication in families, and with us. If you’re (a doctor or a nurse), let the parents hear from you. You have to make them comfortable enough to talk. You have to make them feel that there’s no point in hiding details, there’s nothing they can’t say. They have to be honest, and you have to be honest and not just give them a pretty picture when there isn’t one.”

In the course of a casual conversation with Ms. Pighini, the doctor discovered that both a parent and a grandparent of Mr. Howes had suffered from a severe, even life-threatening pancreatic illness. She mentioned it by chance, not because she thought it could affect her baby.

Dr. Patel immediately recommended that the father be tested for the gene that carries the inherited disease, along with the baby, suspecting that to be the source of the rapid heartbeat. Sure enough, he’d diagnosed the problem.

Now, the family’s doctors, including the pediatrician, Dr. Patel and others, know what they’re dealing with, and what they can do to help, explains Dr. Patel. In this case, there isn’t an obvious solution. “But at least they know what they’re dealing with — knowledge is always better than not knowing.”

Communication — or love, in the words of some — helped identify the problem, not just technology, and it is often the final solution.

“No matter who they are or what they have, we love them. And we take care of them,” says Nurse Back.

That loving care gets a huge boost from its high-tech tools, too — something particularly important to Ms. Back and to Dr. Patel, although for different reasons.

“For me, I never understood how hard this was on parents until my fourth child spent a week in the NICU,” admits Ms. Back, the mother of five. Machines such as the Giraffe, a cradling unit that can weigh the baby, take its temperature, instantly ascertain if it’s too hot or cold, allow for X-Rays in the bed, monitor the children’s pulse, blood pressure, oxygen levels and others — and do many other things — can help solve the kinds of problems she faced.

But that technology didn’t exist when Dr. Patel was born prematurely about 35 years ago in the western part of India, weighing in at just 3 pounds.

“It was a situation then for many in India or elsewhere that parents just prayed a lot and hoped for the best, and if the babies got good basic care, there wasn’t a lot else they could do,” he says.

He was an only child, and though he started small, he made his parents proud. He finished medical school in India, where programs are highly rated, and then came to the United States to do internships, residencies and fellowships in pediatrics and neonatology at such institutions as Sloan Kettering in New York and the Children’s Hospital of Pittsburgh.

“That’s why I’m doing what I’m doing,” he reveals.

That and love.

“This isn’t about a paycheck,” says Ms. Back. “This is about love. If you don’t love it, you’re not going to learn it.”

Everybody on the NICU at Peace Rover Regional appears to have learned it thoroughly. ¦