The scene is intense. A team of nearly 30 fills the operating room, ready to help deliver a critically ill baby. Soon, months of planning will be put to action.
As she waits for her first child to arrive, Dawn Walsh of Bellevue, Neb. experiences more than the usual nervousness of a new mother. Her baby has a large growth on his neck. Doctors worry he might not be able to breathe.
As the delivery begins, it seems to proceed as any routine cesarean section would, but this one is different. A multidisciplinary team with a carefully choreographed plan is ready to perform an Ex utero Intrapartum Treatment or EXIT procedure.
"We plan for an EXIT procedure when a mass, tumor, or other abnormality is detected in a place that could interfere with the baby's ability to breathe on his own," explains Robert Cusick, M.D., pediatric surgeon at Children's Hospital & Medical Center. "This means we want the baby to continue being supported by mom for at least a short time after birth."
With the classic EXIT procedure, the baby is only partially delivered. His head, upper chest and arms are visible outside of the uterus while the rest of the body remains inside.
"This allows us to maintain volume in the uterus and prolong placental support, meaning mom is still breathing for baby through the umbilical cord," says Robert Bonebrake, M.D., an Omaha perinatologist. The team has to move quickly. Placental support usually lasts for 30 minutes or less. "Our goal is to establish an airway and help the newborn breathe on its own. Without this immediate intervention, the baby could suffer loss of oxygen and brain damage or even death," Dr. Cusick says.
Once an airway is opened and the team feels confident the baby will survive separated from mom, the umbilical cord is cut. As the only medical center in Nebraska with a full range of pediatric subspecialists readily available, Children's is uniquely prepared for these challenging cases. Several of these procedures have been successfully performed in the past year.
"Planning is a huge part of this process," says Kim Hissong, M.D., pediatric anesthesiologist at Children's. "The entire team including anesthesiology, perinatology, neonatology, pediatric surgery, radiology and nursing have care conferences well before the delivery to determine what the approach will be."
For Dawn and Braydon Walsh, the detailed preparation and medical expertise helped to calm early fears. "We were told exactly what would happen," says Dawn. "We were still overwhelmed by it all, but we knew the baby and I would get the best care possible."
In the delivery room, months of uncertainty finally came to an end. "When Landon came out, he gave a little cry and both Braydon and I just broke into tears," says Braydon. "It was a huge relief. We knew at that point he would be okay."
The small cry sent a big signal to the medical team. Knowing that Landon had some capability to breathe, the umbilical cord was cut and doctors inserted a breathing tube.
Baby Landon spent six weeks in the Newborn Intensive Care Unit at Children's. The lymphangioma that had been diagnosed before birth had spread into his airways and the back of his tongue. "Lymph channels run throughout the body," explains Dr. Cusick. "During fetal development, if they form in an abnormal fashion called lymphatic malformation, the condition is known as lymphangioma. The lymphangioma can become quite large and the lymph channels become disorganized. Lymphangioma can be found in the chest, abdomen, or in an extremity. If they occlude the airway, they become life- threatening, as in Landon's case."
Surgery and treatments that make the tissue "scar down" are the remedies used to treat patients with lymphangioma, explains Dr. Cusick.
Landon couldn't eat by mouth initially, due to his swollen tongue. Dr. Cusick inserted a gastrostomy tube (GT) into his stomach so that he could receive nourishment. Later, as he grew, Dr. Cusick replaced the GT with a gastrostomy button (GB), a small opening at skin level. "When he can fully tolerate food by mouth, we will remove the GB and the hole will close," he says.
Because Landon has had obstacles to overcome, his parents have trusted in the many therapies and programs offered at Children's. Occupational therapy has helped him learn to drink from a cup and how to feed himself. Now, "Landon is eating everything we eat, and gets upset when you don't share it with him," his mother reports.
"Landon is bright, but because he had trouble with mobility, we babied him," explains Dawn. "Penny Warren, his physical therapist at Children's, worked with him. She helped us get over our fears. She told us, 'I'll get you there.' And she did. He was crawling by eleven months and walking at 14 months." She says her toddler likes to take walks, and please, no stroller for this young man. He would rather take your hand and lead you on, she says.
Dawn and Braydon Walsh feel the staff at Children's continue to meet Landon's needs. "They are attentive to our concerns and worries," says Dawn. "We want Landon to reach his full potential, and so do the staff at Children's."