Growing Up with Doctors: A Mother’s Reflection on Physicians, Healthcare Teams, and a Lifetime with Spina Bifida

By Marsha Miller

Almost ten years ago, I wrote a story about my experience navigating the healthcare system as a young woman with a myelomeningocele baby.  It was a story about “forgiveness” because my baby was two-months old before his back was closed, his brain shunted, and his prolapsed rectum repaired. It was a system failure.  Now, I would like to talk about how different medical encounters can be when a person with a disability is an adult rather than a pediatric patient…
Paul, now 46, often comments on how he would like to teach doctors about spina bifida.  Why? Perhaps it is because he compares healthcare as a child with adult healthcare, and the latter is disappointing.  As a child, he received patient-centered care because he was tethered to a team of doctors and allied healthcare professionals who provided services in one renowned children’s hospital.  During an essential all-day event, each doctor/professional examined Paul, met as a team at the end of the day, and developed a plan for his healthcare.  Once he reached 18, his care was transferred to the adult hospital.

As an adult, Paul no longer saw a team of doctors or professionals, or even anyone familiar with spina bifida.  Fortunately, he lucked out finding a good urologist.  This physician admitted to having limited to no experience treating spina bifida patients, but he was willing to treat Paul if he would give him a chance.  Paul appreciated his honesty, and the perfect doctor-patient relationship began. Why?  If the urologist didn’t know the answer, he said so.  If he could find the answer, he did.  He had emotional intelligence and practiced empathy.  He asked Paul if he had questions, and looked him, not me, in the eye for the answers.  He came to see Paul in the hospital.  He gave Paul his home phone number. On the few occasions that Paul called, he always returned the call in a timely fashion.  After surgical procedures and hospital discharge, he called to check on Paul.  The time came, however, when this wonderful urologist retired.  To show his appreciation, Paul gave him a pocket watch with an inscription describing him as a wonderful doctor and friend. The doctor sent Paul a handwritten thank you note—not an email!

Before retirement, Paul’s urologist referred him to a renowned urologist who he thought was the very best.  Unfortunately, this doctor lacked the social skills of the former urologist. Paul has frequent urinary tract infections, and can no longer self-catheter because the damage caused to his urethra as a child.  The new urologist recommended the Mitrofanoff procedure.  Once that was described, Paul was appalled and refused.  He felt it akin to creating the “Frankenstein” monster.  An exaggeration, maybe, but because he wanted “normalcy” this would make him a “freak.”  “How would he like to pee from his naval,” Paul asked.  The urologist’s response was “You’ll be back.”  Paul continues to refuse the procedure, even though others have recommended it.  The urologists are only trying to find a solution that may one day save his life.  Nevertheless, had they shown empathy, some gentleness, some caring and understanding, or even considered the psychological impact, it might be a different situation. Sometimes the “spirit” needs attention.

Then there was the orthopaedic surgeon who wanted to remove the bone from one leg because of a pressure sore and suspicion of osteomyelitis.  I was sick to my stomach, and when it was night I walked in the dark stillness to think and cry out to God for help, and he answered.  I called Paul’s pediatric orthopaedic surgeon for advice. At his suggestion, I brought Paul to the children’s hospital. He and the pediatric plastic surgeon together examined Paul and agreed that he needed a debridement and flap.  They sent Paul to an adult “neurological” orthopaedic surgeon for a second opinion. This surgeon requested a bone aspiration.  He agreed to follow their plan of care, if the aspiration came back negative.  It did and he referred Paul to a plastic surgeon for debridement and flap.  I called the orthopaedic surgeon who had wanted to perform the radical procedure to let him know that Paul would not be returning, and to his credit he admitted that this was unfamiliar territory.  It still scares me to think about the outcome if Paul had agreed to the surgery.

I share these stories not to blame or criticize the medical community, but to provide insight.  Paul’s healthcare needs are complicated, and he has received extraordinary care.  After all, these children once died at birth.  I “thank you” with all my heart for saving my only son.  My intent is to shed light on the fact that adults with congenital birth defects and chronic illness do not receive the same patient-centered care that they received as children.  After all, nothing has changed for Paul.  He is still paralyzed and incontinent.  The same problems are still there, but there is no team and continuity of care.  Instead, his care is fragmented, and he bounces from hospital to hospital seeking the “perfect” doctor-patient relationship.  I ask you, will he find it?


Marsha Miller, MA
, is currently a consultant who advises Graduate Medical Education programs across the country.  She is the former Associate Vice President for Resident Services at the Accreditation Council for Graduate Medical Education.

2 thoughts on “Growing Up with Doctors: A Mother’s Reflection on Physicians, Healthcare Teams, and a Lifetime with Spina Bifida

  1. You’ve put your finger one of the most disappointing aspects of today’s medical care – lack of coordination and long-term treatment oversight. I do not have a disabled child, but my mother had a stroke last year and the family has had to navigate a fragmented system of numerous medical specialties where no one seems to be in charge. We are essentially trying to figure out her best medical choices for ourselves – from medication to physical therapies to living options. The pediatric system of team-managed treatment that you describe is sorely needed for all patients, but especially those with more complicated medical issues.

    Liked by 1 person

  2. What a heartfelt reflexion and plea for treating each person as a unique individual. We can not advocate for change if we do not speak up for ourselves and others. Congratulations on your publication.

    Like

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