By Marsha Miller, mother

No one ever said: “You have given birth to a beautiful baby boy.”   I never received a hospital birth picture.   Instead, I was placed in a private room, a time when birthing mothers shared a room, while doctors and nurses spoke in whispers and tiptoed about.   I asked if my baby was ok, and the nurse responded: “That’s a good question.”  After 72 hours in labor, I could not pursue the answer and fell exhausted into sleep.  I remember thinking something is wrong.

This is how my son Paul’s life began.  Now, forty-seven years later he is still seeking normalcy and appropriate healthcare.  His story is one of struggle, belonging, and hope for patient-centered healthcare. This May, Paul and his wife will be joining the Spina Bifida Association for Teal on the Hill, to fight for normalcy and appropriate healthcare. As you read our story below, I urge you to consider how our stories may relate, and how our stories can make a difference on Capitol Hill, advocating for the lives of people with Spina Bifida.

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 UTI 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 orthopedic 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 orthopedic 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” orthopedic 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 orthopedic 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, Paul, Kaley (Pauls wife), and their son Connor, will all be attending Teal on the Hill. Will you join them and advocate on behalf of everyone affected by Spina Bifida? Learn more about this advocacy event here.

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.