One early fall day in 1997, 13-year-old Nathan Domingue came home from a soccer game with a stomach-ache. Not exactly cause for alarm, but it was the beginning of a medical journey that's changed his life forever.

Very suddenly, Nathan was in excruciating pain, and his parents took their son to his doctor, who practiced homeopathic medicine. The doctor did acupuncture and gave the boy a homeopathic remedy for pain. "He said we should go to the emergency room in four hours if the pain didn't subside," recalls Nathan's mother, Aster Yilma. "We couldn't wait that long. Nathan was literally doubled over and couldn't walk. He was sweating so much that, as I held him, my clothes became wet."

The South Orange, N.J., boy was taken to a hospital and remained in the Intensive Care Unit for six weeks, where, despite three surgeries on his small intestine, he did not make the progress his parents had hoped. Ms. Yilma says there were gaps in communication from the doctors and in responses to the family's needs. Despite the hospital's warning that transferring Nathan to another facility could expose him to infection, the parents were so concerned about their boy's health that they took the risk. "We did our research, talked to friends in the medical field, and decided to transfer Nathan to University Hospital because it is a teaching institution, and the pediatric gastroenterologist came highly recommended," says Ms. Yilma.

Nathan's condition was highly unusual. He had a volvulus, where the small intestine twisted around itself and cut off the blood supply. A small bowel volvulus is most often found in newborn infants. More surgery would be needed, Nathan's parents were told by Dr. Colin Bethel, chief of pediatric surgery at University Hospital and assistant professor of surgery at New Jersey Medical School. "I have lost track of how many operations Nathan has had," says his mother. "But I will always remember Dr. Bethel telling Nathan how much small intestine he had left--about one foot. He stood by the bedside and started rubbing Nathan's head with one hand and holding the other hand - the look in his eyes said it all. 'Buddy," he said, "I don't have good news.'"

Nathan remained at University Hospital for several more weeks, as Dr. Bethel performed the necessary reconstructive surgery. He's now able to eat food for enjoyment, but a feeding tube provides nutrients that his small intestine can't absorb. For such a complex case as Nathan's, that's considered a very good outcome. He's been back to University Hospital a few more times, once to have his infected gall bladder removed. "At University Hospital, Nathan was cared for by professional and skilled nurses, and treated by doctors who tended to all of his needs,  psychological and emotional, as well as  physical, " says his mother.    

When Experience Counts

While not every stomachache is an emergency, nor do all children need the specialized care that Nathan Domingue received, his story underscores the value of an experienced, skilled, and caring surgeon trained to work with children. Pediatric surgeons complete between 7 and 10 years of training after medical school -- a general surgery residency, followed by a fellowship in pediatric surgery. "Certainly, there's some overlap between general surgery and pediatric surgery, but some procedures are quite specialized," says Dr. Bethel. "And then there's the psychosocial dynamic-the interaction with children and their families."

Hernia repair is one example when children aren't merely "little adults." In adults, inguinal hernia can be caused by lifting excess weight; in non-emergency cases, the hernia can be supported by a truss. In children, inguinal hernias occur when the tissues forming the floor of teh pelvis fail to close completely. Surgery is scheduled at the time the inguinal hernia is diagnosed in children, no matter how young they are or how small, and some are quite tiny. One in three premature infants has an inguinal hernia. The urgency, says Dr. Bethel, is that a piece of the intestine could become trapped, or incarcerated, in the hernia sac.

As with many adult surgeries, hernia repair and other procedures in children can be done with a laparoscope. Tiny incisions--more like puncture points--are made so that a tiny camera and surgical instruments (some smaller than the size of a drinking straw) can be placed within a patient. The surgeon watches a monitor in the operating room while making the needed repair. "Minimally invasive surgery offers many benefits to the pediatric patient," says Dr. Bethel. "There's no large incision, which reduces post-operative pain and speeds recovery."

Some other frequently performed pediatric operations include appendectomy, splenectomy, and increasingly, removal of the gall bladder. Sickle cell anemia patients often produce gall stones, notes Dr. Bethel, but the reason for the increase in gall bladder operations among otherwise healthy adolescents is not known. Other children have difficulty with gastroesophageal reflux, in which partially digested food and gastric juices back up into the esophagus. There are medications that can help resolve this condition, but in severe cases, fundoplication--a tightening of the juncture between the stomach and the esophagus-is necessary.

While these procedures are done routinely, there's nothing run-of-the-mill about them to the young patients who need them or to their families. At University Hospital, every effort is made to lessen a child's anxiety about being in the hospital and away from his or her parents. Not only are parents encouraged to escort their child to the operating room, the young patient can also bring along a favorite stuffed animal or doll for extra reassurance.  After the operation, the first faces the child sees can be those of his or her parents, who are encouraged to be in the recovery room. Both before and after surgery, child life specialists provide the activities and the assurance that young people often need.

Special Cases, Special Care

Pediatric surgeons also are called on for unusual or difficult cases, such as Nathan's. Dr. Bethel and his colleague, Dr. Nishith Bhattacharyya, an assistant professor of surgery at New Jersey Medical School, assisted at another hospital with one of the rarest cases--the successful separation of conjoined twin girls. "We worked on the abdomen, which was potentially complicated because the babies shared a liver and there was only one set of bile ducts," recalls Dr. Bethel. "However, the division of the liver and the reconstruction all worked out well."

It's the opportunity to repair rare birth defects that draws some doctors to the specialty of pediatric surgery, says Dr. Bethel. Some babies are born with part of their esophagus missing, a condition known as esophageal atresia. An operation called an anastomosis is needed to join the esophagus together, which in time enables the infant to swallow and eat like other babies. Similarly, pediatric surgeons also are called on to repair intestinal atresia, where in most cases the intestine does not fully connect with the anus. Other babies have sequestration of the lung, where a piece of lung tissue is not connected to the airway and can get infected. "Operating on these newborns provides both the challenge and the satisfaction of giving these littlest ones a better, healthier beginning," says Dr. Bethel.

Finding New Ways

Sometimes, treating children with birth defects means doing things differently than the "way it's always been done." That's what Dr. Bethel and Dr. John Bach, professor of physical medicine and rehabilitation at New Jersey Medical School, believe when it comes to children with spinal muscular atrophy (SMA).

About one in 6,000 babies is born with SMA, a genetic, neuromuscular disorder that destroys the nerves that control voluntary muscle movement. While SMA can occur at any age, the most severe form affects newborns. Because of their weak muscular development, these babies have trouble sucking, swallowing, and breathing. "In some parts of this country, parents are told that their baby has no chance at a meaningful quality of life, and that the best thing they can do is take the child home to die quietly," says Dr. Bethel. "Dr. Bach and I feel quite the opposite-that many of these children are quite intelligent, even brilliant, and should be given every possible chance to survive."

SMA babies often suffer nutritionally because they can't lift their heads to suck. Typically, says Dr. Bethel, the answer is surgery to secure feeding access, with the babies receiving general anesthesia. However, most of the time, these patients are too weak to be weaned off the ventilators that help them breathe during the surgery.

At University Hospital, Dr. Bethel, Dr. Bach, and pediatric anesthesiologists are changing the traditional way of thinking. Under this team approach, the baby is given local anesthesia sedation through an IV while the feeding tube is inserted. The parents are able to be at their baby's side during the procedure. "This is not a new technique," says Dr. Bethel. "It's an old technique with a new application."

Feeding tube placement is done at other hospitals but not under local anesthesia, because surgeons and anesthesiologists have traditionally believed that the child needed to be asleep and therefore motionless in order to perform it optimally. This has become the accepted standard of care over the years.

"In fact, with the appropriate sedation, it can safely and effectively be done with the child awake and sedated," says Dr. Bethel. "There is minimal pain because of the local anesthesia. Parents who have been at the bedside during the procedure have been impressed by how well the children tolerate the procedure with little discomfort."

Afterward, the SMA babies are cared for by Pediatric Intensive Care Unit nurses trained in airway management tools used specifically in these cases. University Hospital receives referrals for this procedure from some of the leading children's hospitals in the country because of Dr. Bach's national reputation, and few have pediatric anesthesiologists who are as experienced in working with SMA patients. The procedure is not limited to SMA children; it can be an option for any severely neurologically devastated child.

This University Hospital team has performed between 10 and 15 of these specialized procedures over the past 18 months. Significantly, they have not had to perform a single tracheostomy, in which an opening is made in the neck for placement of a breathing tube because of respiratory difficulties. When the traditional feeding tube procedure is done under general anesthesia, the child is placed on a ventilator. Afterward, the patient frequently has difficulty being weaned from the ventilator, and a tracheostomy is performed. "A tracheostomy is a nightmare for the parents because it takes away their child's ability to vocalize," notes Dr. Bethel.

Living Proof

Today, Nathan Domingue is 17 years old and an honors student at Newark Academy, despite missing about one year of school because of his medical problems. He is on his way to becoming an Eagle Scout; at his school, he formed an ultimate frisbee team. Nathan dreams of being a mechanical engineer and is applying to some of the top schools in the country in that field. His mother sees his future this way: "If Nathan turns out to be a quarter of the human being Dr. Bethel is, I'd be satisfied."

To find a pediatric surgeon or hundreds of other world-class specialists at The University Hospital, visit our physician/services referral directory by going to: www.TheUniversityHospital.com/physservdirectory.