A Common Presentation
"You didn't tell me she would never walk! You didn't tell me that she would always be so dependent and require so much care! What am I supposed to do now that she's started her periods? Do you know what it's like to have to change her diapers while we're on a vacation, in a gas station, or at a restaurant?" This is Mrs. Danbury's opening statement to Dr. Brown's receptionist, said loud enough so everyone in the waiting area could hear.
"No one told me it would be like this when she was born. They told me they would do some operations on her back and maybe her head, but they didn't say that she was never going to grow up," she continued.
"What kind of job will she have? Who's going to help her change her diapers? Will she get married? Will she ever leave home?"
Marvin is a third-year medical student doing a rotation in the office of Irene's pediatrician. Usually students do not hear parents who become upset with their physician, but this time Mrs. Danbury is really upset and unable to contain herself. The office nurse takes over at this point. "Mrs. Danbury, I know you're upset and I understand your reasons. How about we move you and Irene into an exam room until Dr. Brown can meet with you? He'll be with you in a few moments."
A quick glance at Irene's chart indicates that she is 13 years old and still can't walk. Not only can't she walk, she can't urinate on her own, and she can't tell when she needs to have a bowel movement. She was born with spina bifida and had done reasonably well after her back repair and ventricular-peritoneal shunt. She is in middle school and progressing normally, at least academically. With the special education department's assistance, Irene is mainstreamed and is doing most of the things her peers do. She enjoys drama and recently appeared in a class play.
Marvin wonders what the doctor will say. This mother is really angry! Dr. Brown feels frustrated by his inability to cure Irene. Over the years he has had many conversations with Irene's mother about allowing Irene to be more independent. He also knows that Mrs. Danbury has a new baby, 6 months old. Earlier today over coffee, Dr. Brown and Marvin, not knowing that a storm was brewing, had a philosophical conversation about how unfair life can be to some children. Multiple cultural and religious beliefs are operating for both the physician and the patient such as guilt, responsibility, duty, God's will, punishment, an eye for an eye. How does the physician reconcile his beliefs with this mother's? Is Mrs. Danbury's apparent anger really grief? Marvin feels relieved that he does not have to face Mrs. Danbury alone and is very glad that he is able to observe Dr. Brown and his team work with this mother and child.
''There are many things that can be done to help Irene become independent," says Dr. Brown. "She has the cognitive ability to learn self-management of her bowel and bladder. Many teens and young adults like Irene can learn to perform their own self-care, like changing her own underpants. She is likely to discover she needs little to no help to perform those changes in the future. Multiple agencies and resources can be used including the school, the state rehabilitation commission, and home health agencies to help provide assistance as Irene learns to manage her own self-care needs. Her abilities to problem solve and to care for her urinating and bowel movements need to be assessed because sometimes these can be impacted even when other areas of thinking are not. Sometimes, children with Irene's health needs still need assistance in the form of reminders to perform the care, even if they are physically capable of doing it."
Dr. Brown & Marvin brainstorm about Irene's situation for a few minutes and decide that the best solution would be to meet with the parents and Irene every 6 months to discuss potential problems and explore solutions together before more serious problems develop. Dr. Brown reflects, "Did you know that none of Irene's classmates in middle school wanted to take her, or even go with her, to the school dance? Would it have been possible to anticipate this? How could you help with the adjustment of a preadolescent with a different physical appearance?"
Dr. Brown continues. "One could argue whether the physician has a role in discussing a school dance, since it isn't a medical problem. However, the successful life of the patient may be related to successful peer interactions. I feel strongly that in patients with chronic conditions, whenever possible, the family, the patient, and their physician should be involved in decision-making. With chronic medical conditions, it is imperative that the family and patient have a significant measure of control. If they decide on the solutions, then they will likely be more compliant in carrying them out. Compliance is the single most difficult issue in caring for patients."
Photo from UTMB facebook archives, permission granted by subject
