Tiniest Patients
Mobile Register, June 19, 2005 Section:A Page: 1
Author: Penelope McClenny

Tiniest patients

Medical advances have increased survival chances for babies born extremely early, but doctors say the public should understand the potential for problems

On a recent rainy morning, 2-year-old Julie Lynn Smith clutched a television remote in one hand and grabbed the handle of her brown rocking horse with the other, trying to hoist up her small legs and climb into the saddle.

After a few minutes of practice and finally throwing the remote to the floor, she sat atop the pony and began rocking away.

Just a few feet away, Julie's parents, Janice and Terry Smith, clapped and cheered. The feat might have been a small one, but for a couple who watched their child grow from an 11-ounce newborn with transparent skin who could wear Daddy's wedding ring on her hip, every move is a joy.

"She's changed our lives, I know that," said Terry Smith, from a chair surrounded by photos of the blond-headed, 18-pound toddler.

Julie is one of the success stories of the Hollis J. Wiseman Neonatal Intensive Care Unit at the University of South Alabama's Children's & Women's Hospital. Born after just 23 weeks of gestation, Julie stayed in the unit the first six months of her life. For another 10 months, she stayed connected to heart monitors and oxygen and rarely left her home, to avoid contracting an illness.

In March, media coverage of 10-ounce Malachi Andreas Whitlock, born at USA Children's & Women's on Feb. 15 after 24 weeks gestation, highlighted the struggle that extremely premature infants face. While Malachi defied the odds by living 70 days, he died after being disconnected from the respirator on April 25.

Julie's struggle Julie Smith, now a healthy child who carries just a few reminders of her ordeal - scars from the intravenous lines attached to her arms and legs - began preschool June 1 and returned to USA Children's & Women's June 5 to participate in a Children's Miracle Network telethon.

While she emerged successfully from her premature birth, Julie did so only after overcoming obstacles, such as laser eye surgery, two hernia operations and multiple blood transfusions. Seeing Malachi's story recently, Terry and Janice Smith said, stirred memories of the many anxious weeks and months they spent with their child in the Neonatal Intensive Care Unit.

"It kind of brought it back home to us," Terry Smith said. "We knew exactly what they were going through."

Doctors at USA Children's & Women's NICU say they must balance the opportunities that new equipment and technology have given them to treat these tiniest of patients while tempering the hopes of parents and family.

For many of the success stories like Julie's, there are heartbreaking endings, like Malachi's, in a field where each day brings more uncertainties and challenges.

While advancements in neonatal care have pushed the limit of viability - the lowest weight at which a baby can be born and survive - lower and lower in recent years, physicians say the public needs to understand the risks involved in the care of extremely premature infants.

In the 10 years between 1992 and 2002, births of infants in the United States after less than 37 weeks gestation increased 13 percent, according to the National Center for Health Statistics final natality data.

During that same time, the rate of infants born preterm in Alabama increased 19 percent, according to the site.

Hurdles remain "It's a huge, still, public-health problem," said Dr. Fabien Eyal, medical director of the Children's & Women's NICU, professor of neonatology and director of the division of neonatology at the USA College of Medicine.

Caring for premature babies is also expensive. The cost of caring for newborns without complications is about $1,500, the March of Dimes stated, while the hospital stay for a baby with the principal diagnosis of prematurity costs an average $79,000. In the U.S. in 2002, $15.5 billion was spent on babies with any diagnosis of prematurity, almost 50 percent of the total hospital charges for all infants, according to the March of Dimes.

The rise in preterm births can be attributed to an increase in fertility treatments and women becoming pregnant at later ages, Eyal said.

Another contributing factor could also be that, until several years ago, infants born before 24 weeks gestation were recorded as fetuses, Eyal said, not newborns, a move that could have also affected statistics.

Dr. Kathy Porter, professor and chair of obstetrics/gynecology at the USA College of Medicine, professor and chair of maternal-fetal medicine and a board certified high-risk obstetrician, said other factors that may have contributed to the increase include the stressful, fast-paced lives many women now lead as well as any other existing medical conditions in mothers, including diabetes and asthma. Women who have had previous preterm births are also more susceptible, Porter said.

Those who become pregnant through fertility treatments are also at a higher risk of delivering early, Porter said. While multiple births carry this risk, even single pregnancies attained through fertility can lead to preterm deliveries for reasons that aren't clear, she said.

"Women who have infertility are unique," she said. When Porter finds out a patient became pregnant through treatment, she said, a red flag automatically goes up.

For many women, however, the causes behind preterm delivery are still unknown, she said, and the condition does not discriminate between socioeconomic or racial lines.

"Preterm delivery crosses all borders," she said.

In the early 1980s, only 20 percent of the infants born at Children's & Women's who weighed under 1.7 pounds survived, according to statistics from Eyal.

In 2003, that figure had jumped to 79 percent.

A large increase occurred in the late 1980's with the introduction of surfactant therapy, Eyal said. Surfactant is a detergent-like substance in the lungs that aids in breathing and often exists in inadequate amounts in many premature infants. The therapy is inserted through a tube down a baby's windpipe, Eyal said.

Technology helps The development of more advanced respirator machines built specifically to deliver small volumes of oxygen also helped, Eyal said, as a large part of the problems premature newborns face are respiratory.

In fact, many advancements that simply made equipment smaller has helped, he said. And, over the years, those who work in the field have also gained more experience, Eyal said.

"The more you do, the better you get at it," he said. "The experience of doing more and more of it makes a huge difference."

But Eyal is quick to say that even with the advent of these medical advances, the life of a premature child, especially those weighing under 2.2 pounds, is anything but stable.

"These are not easy months because complications happen all the time. One minute those babies are going to be absolutely fine, another minute it's an entire catastrophe," he said.

Michael and Laura Manley of Mobile know about those complications. On Dec. 4, Laura Manley gave birth to John Baker Manley after being pregnant for just 24 weeks. In front of the couple lay seven months of obstacles and problems for a child Laura Manley called "very resilient."

Laura Manley previously gave birth to a child at 21 weeks that did not survive.

Her physician told her she may suffer from a condition known as an incompetent cervix, meaning it's weak and has a difficult time holding a baby, but Manley said that diagnosis was only probable. When she became pregnant again, a stitch, called a cerclage, was placed on her cervix to try and keep it closed and prolong her pregnancy.

Twenty-three weeks into her latest pregnancy, Manley's water broke. She was admitted to the hospital and able to delay delivery for a week, but her son was born on Dec. 4 by cesarean section, weighing 1 pound 3 ounces.

Since birth, John Baker faced some of the most serious complications for a premature baby. About a month after being born, he underwent surgery to close a valve in his heart, his mother said. He also had two laser eye surgeries and suffered several infections.

One of John Baker's biggest problems was necrotizing enterocolitis, a condition in which infection and inflammation can destroy a part of the bowels. Because the condition affects his body's absorption of nutrients, he suffered a spontaneous fracture in his arm, Laura Manley said.

"We've had to cross one obstacle after another, and there just always seems to be something lurking around the corner," she said in an interview in early June.

On June, 6, the infant was air-lifted to Nebraska. On June 13, a little over seven months after his early arrival, John Baker died.

"I certainly have nothing but the highest praise for the staff there at Children's & Women's," Michael Manley said a few days after his son's death.

Ongoing battles For every heartbreaking story in the NICU, there are many parents who eventually get to take their tiny children home. While many eagerly anticipate the day their baby is finally able to leave the NICU, however, the child's medical battle may just be beginning.

Janice Smith, Julie's mother, woke up one morning when she was 23 weeks pregnant and didn't feel well. She stayed home from work, and by the next day felt worse. She called her doctor, who told her to come to the hospital.

Smith was admitted to Springhill Medical Center, where she was diagnosed with preeclampsia, a condition marked by high blood pressure in pregnant women. She was rushed by ambulance to USA Children's & Women's, where she delivered Julie by cesarean section.

"When they first told us (the baby must be delivered early), and the doctor walked out, we cried," Janice Smith said.

For the Smiths, who tried to have a child for 51/2 years before turning to fertility treatments and becoming pregnant with Julie, the news was hard to hear. So, when a doctor came in to explain the risks of delivering so early, including the health problems that could plague their child later in life, and asked if the couple wanted the hospital staff to do everything they could to save the baby, they said, "Yes."

If possible, doctors discuss the health risks of delivering preterm babies with the parents before the child's birth, Eyal said, asking the parents how much effort they want to be made to save the child. They may also view a film from the March of Dimes on the risks of prematurity, Porter said.

Many times, serious health problems don't manifest immediately after birth, Eyal said. For instance, a lesion in the brain that could be indicative of cerebral palsy might not be visible until six weeks, he said, and vision problems leading to blindness may not appear until after two or three months.

The highest risk Children born before 28 weeks gestation are at highest risk of developing serious complications, Eyal said, with an estimated 30 to 40 percent chance of having some major health problem. After 28 weeks, those risks decrease significantly, he said.

But premature children aren't usually considered to be "in the clear" for major health problems until after they're 2 years old, Eyal said.

"Very often, we don't have the answer, even up to discharge," he said.

While doctors make the effort to explain these odds to parents, their message may not always come across clearly, Porter said.

"They don't understand the risk of cerebral palsy. They don't understand the risk of handicap and disability," she said, adding later, "They'll always feel they are going to beat the odds."

But for each couple that means something different, Porter said. While one couple may feel completely overwhelmed at the prospect of a child with disabilities, others see it as much less of an issue, she said.

Porter also said sometimes parents must realize when all reasonable efforts have been made to save their child.

"The other thing I tell parents is, 'Be realistic about how far you make us push. There is a time to let go,'" she said.

In his 30 years in the field, Eyal said, he has seen the limit of viability increase numerous times. Just when medical professionals insisted they had reached the limits on the youngest a child can survive outside its mother's womb, science, technology and experience pushed it further, he said.

"At one point, taking care of a baby less than 1,500 grams seemed ridiculous," Eyal said. By contrast, Julie Smith was born weighing 311 grams, and John Baker Manley at 538 grams.

When asked if the limit could be pushed even further, Eyal refused to say no, pointing to break-through advances in the past that have made survival possible for smaller and smaller patients. The doctor did say that the current technology would not support an infant any younger than the ones currently being treated.

"It may require a totally different type of technology," Eyal said. "Right now, 22, 23 weeks is definitely the limit."

There are still some doctors who disagree about the morality of delivering infants so small, Eyal said, and the subject remains controversial.

"It's a thorny issue," he said. "When it's successful, it's beautiful, but it's definitely taking a higher risk."

CUTLINES: BILL STARLING/Staff Photographer Laura Manley puts her hand on her 6-month-old son, John Baker Manley, as he lies in an incubator in the Neonatal Intensive Care Unit at USA Children's & Women's Hospital on June 2. Born at 24 weeks, and weighing just 1 pound, 3 ounces, John Baker survived numerous problems during his time in the unit. A week after being air-lifted to the University of Nebraska Medical Center, John Baker died on June 13. BILL STARLING/Staff Photographer Julie Lynn Smith sits in her mother Janice's lap as she looks through her baby book last month. Julie was born prematurely at 23 weeks and weighed only eleven ounces. Now 2, Julie is one of the success stories of the Hollis J. Wiseman Neonatal Intensive Care Unit at the University of South Alabama's Children's & Women's Hospital, where she spent the first six months of her life. Register ! graphic Premature survival rates Source: Dr. Fabien Eyal, University of South Alabama Children's & Women's Hospital QUOTE In the 10 years between 1992 and 2002, births of infants in the United States after less than 37 weeks gestation increased 13 percent, according to the National Center for Health Statistics final natality data. During that same time, the rate of infants born preterm in Alabama increased 19 percent, according to the site.

This article reproduced with special permission from the Mobile Register.