Nolan Miller's Story
All babies spit up.
That's what Nolan Miller's parents thought after they brought him home Sept. 20, 2003, two days after he was born. But Nolan wasn't just spitting up a little milk. Nolan was vomiting. Constantly. Then he stopped having bowel movements.
"He took a bottle and it all came right back up," said Nolan's father, Matthew. "Then it kept coming."
A systems engineer for Methodist Hospital, Matthew telephoned a local hospital. The service's on-call pediatrician advised that he and his wife, Amy, take Nolan to the emergency room. Still vomiting after they arrived, Nolan was kept in the emergency room while physicians conducted a series of tests.
"That was one of the longest nights in our lives," Matthew said.
Nolan was admitted and the battery of tests continued, yet still no cause was found. Various diagnoses were considered but none was a clear-cut answer. Nolan was placed in full isolation at the hospital's Neonatal Intensive Care Unit. Two days and more tests passed and still no answer.
"They told us the tests showed nothing wrong," Matthew said. "They told us to prepare ourselves . . . that we were going to lose him."
Matthew and Amy refused to give up hope.
Acting on the advice of a friend, they requested a call be put in to a local pediatric neurologist, who spent all night reviewing Nolan's test results before suggesting the attending physicians reevaluate exploratory surgery. A pediatric surgeon was brought in, and the operation revealed that Nolan was suffering from Necrotizing Entrocolitis (NEC), a rare condition that most often affects premature babies (Nolan was full-term) and had escaped detection on the X-rays and previous tests.
With Necrotizing Entrocolitis, bacteria had begun to eat away at Nolan's small bowel. The formula he was fed would go only so far into his bowel, then be forced back up, causing him to continuously vomit.
The diseased bowel was removed and the Millers were advised a second surgery in six to eight weeks would be needed to see if the bowel portion that remained had healed. During that second surgery, doctors found the bowel had not healed and additional small bowel was removed. Nolan was left with approximately 34 cm of his small bowel - approximately one-fifth of the 150 cm he had at birth.
The resulting condition, known as Short Bowel (Gut) Syndrome, required that Nolan be fed 24/7 via a gastrostomy tube and a second central line for Total Parenteral Nutrition - a fluid mixture that can include a combination of sugar and carbohydrates, proteins, lipids, electrolytes and trace elements. Because TPN bypasses the stomach and liver, dependence upon it for a prolonged period of time can lead to liver damage or failure.
Though his vomiting continued, the rate of his feedings was gradually increased, and Nolan was released from the hospital Dec. 22, 2003.
At 9 a.m. the following day, Nolan and the Millers, exhausted from the first night at home dealing with feeding pumps and continued vomiting, met with the Intestinal Rehabilitation Program team at Nebraska Medicine.
The Millers found that everyone in the room shared a common goal - to one day wean Nolan off TPN and the feedings.
And that gave them hope.
Whether the cause is disease or massive surgical resections due to any of a number of conditions, children and adults with small bowel syndrome or intestinal failure are more than uncomfortable.
They can't eat.
TPN and gastrostomy or G-tube feedings are treatments but they aren't to be considered permanent solutions - unless there is no alternative.
Determining and implementing the options is the role of the Intestinal Rehabilitation Program team at Nebraska Medicine.
David Mercer, MD, PhD, is a transplant surgeon and researcher at the University of Nebraska Medical Center (UNMC) and also serves as Director of the Intestinal Rehabilitation Program at Nebraska Medicine. Along with his colleagues, including other transplant surgeons and gastrointestinal specialists, the team works to restore enteral autonomy and to decrease dependence on TPN through diet, medicine and/or surgery. The program is among the few comprehensive centers in the United States to offer a complete range of medical and surgical interventions for the management of adult and pediatric patients with complex intestinal disorders.
"The greatest strength of our program is the people," Dr. Mercer said. "We have assembled a simply outstanding, dedicated group of health-care professionals who all have the common goal of helping children and adults with short bowel syndrome. Everyone is absolutely committed and passionate about what we do."
The family-centered care that is the core of the program has helped attract parents of infants and small children from around the country. "I can only imagine how frightening it must be for parents when they hear their child has short bowel," Dr. Mercer said. "We're here to help people understand that there is hope, great hope for what we can do to help their children. We all have families of our own, and we treat all our children in intestinal rehab as if they were our own."
Once patients contact UNMC, they quickly become very familiar with Nurse Coordinators Brandi Gerhardt and Jenna Kopp and Clinical Dieticians Brandy Sunderman and Becky Weseman. All have world-class expertise in managing complex care issues associated with short bowel patients. Together, they form the backbone of the program and interact with patients and their families regularly, and sometimes even daily.
"If there's one thing I could pass on to patients' families," Dr. Mercer said. "It's that we will make sure they are comfortable with all the issues surrounding the health of their children no matter how long that takes, and that they will be very involved in everything we do. They will always feel supported. They are a critical part of the team and we'll all work together to help their children be as healthy and independent as they can be. This is our pledge."
At the very first meeting with the intestinal rehabilitation team, the Millers knew they were in the right place.
"They were really optimistic about Nolan," Amy said, "and we needed to hear that."
In an attempt to reduce the vomiting, an adjustment was made to Nolan's feedings and the Millers were sent home, told to come back again the next morning.
"They asked us right away how the night had been and we said, 'better,'" Matthew recalled. "They said, 'Good. We didn't have you back as much for Nolan today as we had you back for you. If you hadn't said it had gotten better, we were going to admit all of you to the Nebraska House so you could get the nursing care and rest you need to get you all back on your feet.'"
Matthew still marvels at the memory. "That showed us they had all of our best interests at heart and had truly taken an interest in our case."
The team's personal care and concern persisted as Nolan was slowly weaned from TPN.
"The greatest thing about the team is that they've always been available to us," Amy said. "We've called them at all hours and they're always there for us. They showed us they trusted us to take him home and take care of him."
The team gradually increased the feeds though the g-line or "button" into Nolan's stomach, weaning him from the nutrients provided by the TPN until it was "nothing but saline," Matthew said.
Initially told to expect their son to be on TPN for at least five years, the team removed the TPN line when he was 13 months old.
"It just blew us away," Matthew said. "It gave us a greater sense of hope. This team knew us, they knew him and they had a plan."
Nolan started eating solid foods when he was about 2 1/2 years old and hasn't stopped since, preferring fruits and vegetables over candy, his parents say.
Today, he looks no different from any boy approaching his fourth birthday. The only signs that remain are hidden beneath his T-shirt - a horizontal scar and the g-button through which he receives feedings each day.
That, too, will one day change - if his parents have their wish. "Even though his hydration will always be an issue," Amy said. "Our goal is to have him off his feeds at age 5."
The Millers enjoy sharing their son's story, hoping it will help provide encouragement and inspiration to other parents of children who suffer from NEC and short bowel syndrome. And, they do their best to spread the word about the care and treatment they experienced through the Intestinal Rehabilitation Program.
Matthew tells the story of a recent visit he and Nolan made to Nebraska Medicine. There in the clinic waiting room were a couple and two mothers. Their babies were being fed through tubes and TPN lines.
"They looked tired and scared," Matthew said. "I had to think, they must look like how Amy and I looked when all this started. So I told them, 'You're in the right place.'
"They asked me how I knew, so I lifted Nolan's shirt and showed them his feeding button. They were amazed and went on and on about how he looked healthy and happy just like any other child.
"Right when they were thinking everything is bad and going downhill fast, here they could see what this team could do for them. They could see there really is hope."
That's important. Because, for the Millers and the dozens of parents like them, seeing is truly believing.