Ottawa ? During her good days, the only clue that Chloe Robinson’s first seven months of life have been filled with physical turmoil is the tube running from her chest to a backpack, or the second tube visible in her nose.

“She’s a happy little baby,” said Chloe’s mother, Chrissy Robinson. “Developmentally she’s right on target with all of her milestones.”

But since Chloe was born six weeks premature on Aug. 18 at Lawrence Memorial Hospital, there have been many bad days filled with pain. She has spent more time in hospitals than she has in her Ottawa home.

Chloe is unable to keep food in her digestive system. It runs right out.

“It’s been a roller coaster,” Robinson said of the past several months. “One day she’ll be great, happy and active. The next day she’ll be in pain and screaming. It’s been quite a ride.”

Doctors at Children’s Mercy Hospital in Kansas City, Mo., and the University of Nebraska Medical Center in Omaha have had difficulty diagnosing the baby’s illness. The family recently spent two weeks in Omaha while Chloe was undergoing medical tests.

Doctors’ conclusions

The best conclusion doctors have been able to make is that Chloe’s digestive problems stem from an immune deficiency. And during early testing at Children’s Mercy it was discovered that Chloe has a rare form of anemia that keeps her blood from clotting. Doctors learned the baby’s father, Josh Robinson, has the same blood disorder but didn’t know it.

The blood disorder alone isn’t a major problem, according to the Robinsons. It mainly requires certain procedures to be taken prior to a major surgery, should that be necessary. Josh Robinson has never had to have major surgery, he said.

While Chloe was staying in hospitals, her parents also stayed with her. Both have missed many work days, especially when Chloe was in Children’s Mercy for more than three months last fall.

Josh Robinson teaches at Garfield Elementary School in Ottawa. He has taught third and fifth grades, but was assigned to teach first grade this year for the first time.

Community pitches in

“She (Chloe) was born on the first day of school and that kind of threw everything out of whack in trying to get first-graders going in the right direction and me trying to get used to teaching a new grade,” Josh Robinson said.

Chrissy Robinson has considerable absences from her job as a children’s case manager at the Franklin County Mental Health Clinic.

“They’ve been very good about it,” she said of her co-workers at her clinic. “They understand family comes first.”

In early March, Garfield Elementary had a fund-raiser to help the Robinsons pay expenses. The combination pancake feed and cake sale raised $6,000 for the family. The pancake feed, which is conducted yearly, usually raises money to help the school. The idea for using the fund-raiser to help the Robinsons originated with faculty and involved the school’s Parent-Teacher Organization.

“We had a fund-raiser at the beginning of the (school) year, and it was very profitable,” said PTO President Shane Haas. “We felt like it was better to use this one as a fund-raiser for the family.”

As a result of publicity about the Robinsons’ plight, more people attended the pancake feed than just those associated with the school, Haas said.

“The community has really been amazing,” Josh Robinson said. “It’s been a great help.”

More tests

While in Omaha, doctors inserted a small tube into Chloe’s chest. The tube runs from a backpack to her heart and is used to carry liquid nutrition into her bloodstream, thus avoiding the use of more solid foods and keeping them out of her digestive system. Another small tube runs from her nose down to her stomach and is periodically used to send nutrition directly into her stomach.

“It’s funny; most babies are crawling at her age, but because of the tube and backpack, she crab walks,” Chrissy Robinson said.

The Robinsons will be taking Chloe back to Children’s Mercy for additional tests this week as efforts continue to determine whether the girl suffers from immune deficiency or something else. Doctors in Kansas City and Omaha are working together and sharing information.

Chloe’s parents hope that a treatment can be worked out. They also realize that whatever treatment is devised, it will probably be something that will go on for a lifetime, they said.

“You expect to have a healthy baby by the time you go to the hospital,” Josh Robinson said. “Then to come out and go up and down trying to figure this out and still be seven months later without any kind of real diagnosis is really frustrating. But we are making preparations to handle this for a long time to come.”