Andrew and Mariah Doehling

Photo courtesy of the Doehling family

Like most mothers, Helen Doehling was a busy woman when her four children were small. But, her hectic days bore little resemblance to those of her friends and neighbors. Instead of juggling a calendar full of activities or planning family vacations, Helen and her husband, Don, spent their time trading off nights at the hospital and coordinating medication schedules and doctors' appointments.

The family's two youngest children, Andrew and Mariah, both suffered from rare kidney disorders as infants — conditions that resulted in kidney transplants for both. Despite the circumstances, the Doehlings were able to meet the challenge of their children's life-threatening medical conditions while keeping intact their strong sense of faith and family.

Pinpointing the problem

When Andrew was born in 1985, he was a fussy baby. "At first, we thought he was just colicky," Helen says. "He cried often, and he picked up a lot of infections. Our doctor thought he would outgrow the problems, but he didn't."

One morning, when Andrew was 18 months old, Helen went to his crib and found that his eyelids were fluid-filled and puffy; he could hardly open them. A nurse, Helen suspected that Andrew's situation might be a food reaction. After monitoring his condition during the day and seeing little change, she took the 40-mile drive from her family's small farm near Altura, Minn., to Mayo Clinic in Rochester. It was a drive she would come to know extremely well.

After being seen in Mayo's Emergency Department at Saint Marys Hospital, Andrew was examined by a pediatric nephrologist — a physician specializing in children who have kidney disorders. The diagnosis: Andrew had a rare disorder that affected the filtering process of his kidneys. In addition, his immune system was not working properly, which made him susceptible to repeated infections. Eventually, Andrew would need a kidney transplant.

Navigating a difficult time, together

For a time, Andrew's physicians at Mayo Clinic were able to manage his disorder with medications. But, in 1991, when he was 5, his condition deteriorated. He began receiving dialysis, and his name was placed on the organ-donor list. Fortunately, the wait was short; six weeks later a kidney became available for Andrew.

For Helen and Don, the timing was a mixed blessing. "In the midst of dealing with Andrew's transplant, I was four months pregnant with Mariah," says Helen. "I was so emotional. It was stressful. But, we were very comfortable with the care Andrew was receiving at Mayo. And, we were glad that the transplant could be done close to home, so we could all be together."

After his transplant, Andrew suffered complications that necessitated more surgeries. He remained at Saint Marys Hospital for four months. The Doehling's oldest child, Jessica, was 11 at the time of Andrew's transplant. Now 24 years old and a senior in college, she recalls the difference the staff made during her brother's long hospitalization.

"Andrew was such a sick kid. We felt like we lived at Saint Marys," says Jessica. "The nurses and doctors all knew us. They were caring and very personable. They took time to explain things to my brother, Nathan, and me. When we cried, they took time to comfort us. They were so good to our family."

Later in the year, after Andrew came home from the hospital, Mariah was born.

Covering familiar ground

Andrew's physicians had not been able to identify the specific cause of his condition. Concerned that Mariah might be similarly affected, Helen and Don requested that tests be done to determine if Mariah's kidneys were functioning properly. The test results were as surprising as they were uncommon.

"Andrew and Mariah seem to have two unrelated kidney conditions," says Bruce Morgenstern, M.D., the Mayo Clinic pediatric nephrologist who oversaw the children's care. "It's almost unheard of for two children in the same family to have separate conditions such as theirs. It's not impossible, just unbelievably rare. With better genetic testing that was not available at the time of their diagnosis, we may find that they had different forms of the same condition."

Although she received a different diagnosis from Andrew, Mariah would also need a transplant. For Helen, the positive side to her daughter's situation was that the family had some idea what to expect. "Going through it the second time, we knew more about what was coming. We felt like we could manage the situation better than we did with Andrew," she says.

Mariah received her kidney transplant in 1996. Unlike her brother, she received her new organ from a living donor, her father. Jessica recalls what it was like to have both her father and her little sister hospitalized. "It was scary having my dad in the hospital. But, we wanted him to do it. We were all in it together," she says. "The experience really brought us close as a family."

Moving forward

Mariah's recovery from surgery was shorter and less complex than Andrew's. Of the two experiences, Mariah's was more typical of children who undergo kidney transplants, according to Dr. Morgenstern.

"Mariah did remarkably well," he says. "She was the average child who got a transplant and three days later was up and walking around. She was somewhat uncomfortable from the surgery, but not all that bad."

Now, more than a decade later, Andrew and Mariah show few signs of the medical trials they went through as small children. Andrew's difficulties with his immune system disappeared soon after his transplant. Although some concerns remain — each has high blood pressure and asthma to contend with, and both must take anti-rejection medication due to their transplants — their lives now revolve around activities unrelated to medical care. Mariah is busy with junior high school and Andrew is preparing to attend college.

Their experiences underscore the overall success of pediatric kidney transplants. "Kidney transplantation is a well-established, well-proven procedure," says Dr. Morgenstern. "Children who get kidney transplants when they need them can look forward to having an excellent quality of life."