Aspen Gillespie was born on March 19, 1980, after only 28 weeks gestation. The premature girl weighed only 2.1 pounds on the day of her birth and dropped to 1.8 pounds in the days that followed.
According to her mother, Robbie Gillespie of Sugar House, those days were dark and difficult. Aspen was a twin, and her sister, April, who weighed 2.4 pounds, died after only two days.Because of supersensitive skin, Aspen suffered third-degree burns on her arms and legs as a result of simple applications of rubbing alcohol. Aspen's care was destined to be an important education for physicians and nurses dealing with the problems of newborns. In fact, she became one of the nation's first babies under 2 pounds to survive.
As is often the case with premature babies, Aspen was placed on oxygen and stayed for 41/2 months in the Newborn Intensive Care Unit of Primary Children's Medical Center. Total life support was a necessity for her survival in those early months, and yet she insisted on pulling out her own respirator tubes. Every time she did it, she lost some brain cells, resulting in some long-term disabilities that she will have to deal with the rest of her life.
Aspen also had the habit of pulling out the tubes that were designed to feed her intravenously. Finally, physicians had to tie her down just to save her life. The tubing turned out to be too large for her heart, resulting in blood clots, leading to heart surgery.
In spite of frightening battles with infections, heart surgeries, a bilateral hernia, meningitis, and hearing problems, Aspen survived because, as her mother says, "she is a fighter!"
As a lively, attractive 8-year-old, Aspen, who is about to begin the third grade, has surpassed all projections for children with her history. Her normal, healthy appearance does not begin to reveal the extent of her suffering.
As her mother says, "She probably should not have lived through all of this" and wouldn't be here without the devoted and able efforts of the people at the newborn unit.
Robbie Gillespie says her daughter has had "wonderful teachers and therapists" who have encouraged her and brought her along. She is still receiving help with her motor skills and her speech.
Aspen did not walk until she was 3. In fact, she was 3 years old before she was considered "healthy," and she has not been sick since then. Teachers and social workers continue to monitor her progress, and since she is a phenomenon all her own, the question is, "Where do we go from here?" There is simply no precedent for a young lady of her past struggles, and so it is impossible to predict how bright her future will be.
But at the celebration held Friday on the hospital's front lawn with 120 other children - including clowns, ice cream, and an "I Graduated" T-shirt for the children involved - Aspen was doing very well indeed. She was bright, active, and happy to be at the hospital under different and more pleasant circumstances. She and her mother even took a "fun" helicopter ride to contrast with the life-saving one she and many other children took to reach the hospital and life-saving techniques that they needed in those early days. Many other graduates of the specialized unit and their families enjoyed similar activities.
Aspen is just one of the many babies, more than 500 each year, who are treated at the Primary Children's Newborn Intensive Care Unit. They have problems ranging from prematurity to respiratory disease, birth defects, heart defects and intestinal problems.
Some of these babies with severe respiratory problems need mechanical ventilation and high concentrations of oxygen to keep them alive. Unfortunately, these two life-saving techniques contribute to a form of chronic lung disease known as bronchopulmonary dysplasia (BPD).
The disease is neither progressive nor necessarily fatal. With careful management, damaged lungs will repair themselves. However, infants with BPD are at risk for complications including pneumonia, asthma, nutritional problems, developmental delays and sensory impairments. Improvement is gradual and is hardly ever complete when the child returns home.
According to Dr. David Coulter, one of the physicians who oversees the children in the unit, many of these children with respiratory problems would have died had it not been for an important new therapeutic system called Extracorporeal Membrane Oxygenation (ECMO). It is a system that oxygenates the blood outside the baby's body to give fragile lungs a rest.
The machine, usually termed the "`ECMO Circuit," acts as an artificial lung for a baby who is unable to get sufficient oxygen into the blood by way of the lungs. ECMO is used only after standard medical management of the pulmonary problem has failed.
Coulter asserts that 90 percent of the children who are treated with ECMO survive. These are children who simply would have died without the machine. It is "high-tech, high risk, even invasive therapy," but it is, says Coulter, highly effective. "In fact, we have a baby coming in from Portland tonight to use it." The system has been used at Primary Children's for only two years.
Hope DeHart, the 1-year-old daughter of Renee and Dale DeHart of Erda (near Tooele), was one of the first babies to use ECMO. Hope was three weeks premature and was suffering from pneumonia and respiratory problems before being taken to Primary Children's.
When ventilation caused a hole in her lung, physicians placed her on the ECMO machine, where she stayed for only three days. She had to be taken off when she began hemorrhaging in the brain. ECMO clearly saved her life, say her parents, but her blood became thinner afterward, and a host of problems ensued.
Hope has undergone physical therapy to recover mobility in her left side and now crawls without difficulty and is doing very well. The DeHarts say that the newborn unit refers to her as their "Miracle Baby."
Ina and Les Davis of Sugar House have a 16-month-old son, Bracken, a full-term baby who was the third child at the unit ever to use ECMO. Bracken had severe respiratory problems following birth, and normal ventilation would not keep him alive. Physicians determined that there was no way to save his life without ECMO, which he used for five days.
Bracken spent 3 1/2 months in the newborn unit, suffering a host of problems besides the major respiratory one. Physicians had to perform major surgery and remove a third of his bowel, and afterward, Bracken developed a serious skin ailment. In spite of a tendency like Aspen's to pull out his respiratory tubes, he has suffered no brain damage.
Another interesting story to emerge from the activities of the unit involves Penny Shippen of Sandy. Penny suffered a troubled pregnancy and lost two-thirds of her amniotic fluid approximately halfway through her pregnancy. Premature Timothy was born with small, underdeveloped lungs resulting from lack of fluid. Besides respiratory difficulties, Timothy developed a dislocated hip, hydrocephalis (water on the brain), pneumonia and asthma. Penny believes that the newborn unit literally saved her son's life.
Timothy, now 5 years old and about to start kindergarten, is "behind a little bit," but doing well. He just learned to ride a two-wheeler without training wheels, proof of his physical ability, but he still suffers with asthma.
The experience has been "terribly hard" on Timothy's family. During her months of involvement with the unit, it occurred to Penny that parents needed a support group. Many parents who experienced severe personal and family stress needed a forum in which they could ask, "Do you know what I mean?"
Penny took the case to the administration of the hospital, who reacted favorably and appointed her to a 20-hour-per-week position as parent coordinator of the newborn unit. She now meets on a weekly basis with parents to talk freely and openly with no staff present. She considers this to be a highly positive and progressive step for the hospital.
The Primary Children's Hospital's Newborn Intensive Care Unit is made up of talented physicians and therapists who are pleased that in their 10-year history, numerous infants who would have otherwise died are now leading normal and productive lives.
It was evident at the reunion that specialized care that must continue for months results in personal interest as well - among all the people who work in the unit and the children and their parents. Physicians and therapists darted around the hospital lawn, looking for children they had worked with, expressing surprise and delight at the obvious good health of their long-time proteges. It was medicine at its humane best.