Thursday, March 1, 2018

You never forget the really kind doctors (or the not-so-kind ones)

"You remind me of my wife," the pediatric neurologist told me. "She's always taking notes." We were in a conference room in the NICU a few days after Max was born, and I was furiously scribbling stuff down. Dr. Gold been called in for a consult—he was a longtime doctor at Babies Hospital of Columbia University Medical Center. Dave and I were desperate for guidance. Both the pediatric neurologist on staff, Dr. K, and the resident had told us how rare a bilateral stroke in an infant was. "I found just one case in the medical literature," the resident had said. We so needed hope.

Dave and I were in shock, freaked out and overwhelmed. We hadn't known babies could have strokes. On the day Dr. K told us what had happened to Max, he had somberly gone down the list of the many things Max was at risk for: Max might never walk or talk. Max might be cognitively impaired. Max might have vision and hearing problems. The sweet resident had given us some consolation when he spoke about the plasticity of the brain, and how it had the power to regenerate.

Sitting there talking with Dr. Gold, he acknowledged that nobody could tell us what the future held for Max—the mysteries of the brain were many. He urged us to get him as much therapy as possible, because those early years are critical for development. I'd felt the most powerless and despondent I've ever felt in my life as Max lay in the incubator in the NICU, unconscious. It was heartening to know that there was something we could do. We never did take Max back to see Dr. Gold because we found a wonderful neuro close to our home, but I will never forget his warmth and wise words that day in the NICU. Even his off-handed remark, "You remind me of my wife" was so warm and real and non-clinical, the opposite of everything we'd been dealing with.

I randomly found out the other day that Dr. Gold had died in January. I'd gotten an email that the American Academy of Nursing and 96 other organizations had delivered a letter to Congress calling for a bipartisan national committee on mass shootings. As I scanned the list of groups included, I noticed the Arnold P. Gold Foundation and visited the site. Its mission: "To create the gold standard in healthcare—compassionate, collaborative and scientifically excellent care—to support clinicians throughout their careers, so the humanistic passion that motivates them at the beginning of their education is sustained throughout their practice." That's Dr. Gold in the photo above with patient Christopher Savage in the 1990s.

I know just how much the world needs more docs like Dr. Gold—and a nonprofit like the one he founded—because of how that other neurologist in the NICU had made Dave and me feel. He was knowledgable, but he left us in despair about what the future held for our boy. And then, I encountered a doctor who proved even worse. Max was a little over three months old when I visited an experienced neonatologist who'd come recommended by a friend. This doctor examined him head to toe, noticing Max's muscle tightness. He made a comment about how the only other moms he'd ever met who'd had babies with strokes had been mothers who smoked crack. And then he said, "His future looks ominous." When I started sobbing, he looked surprised and remarked, "Nobody has told you that yet?"

No, nobody had, not even the grim pediatric neurologist. I knew, from my conversations with Dr. Gold, that this doctor could not actually predict his future. Afterward, his social worker held Max as I cried some more, got it together, and informed her that no doctor should ever use that word with any parent, because what good did it do a child if his parents had no hope for him?

Hope is what parents of a baby in trauma so desperately need. It is the medicine that revives our spirits and bolsters our determination. And while of course doctors shouldn't be falsely positive, a little hope goes a long way.

I never went back to that doctor, although I've definitely had if-he-could-see-Max-now pangs. I felt the same about Dr. K; he died several years ago.

I read the obituaries for Dr. Gold. He was only the sixth doctor to hold a license in pediatric neurology. He often asked about his young patients' lives, and made it a point to ask parents how they were doing. He'd started his foundation in 1988. He was 77 years old when he met Max, and he treated patients until he was 88 years old. It's because of his foundation that students at more than 170 medical schools and physician assistant programs now pledge the Hippocratic Oath (you know, the one where they vow "first, do no harm") early on in their education, rather than at graduation, so they have ethical expectations set for them at Day 1. One obit quoted him as saying, "You're only half a physician if you're just good at your craft. Unless it's coupled with patient-centered care and humanism, it's suboptimal care."

I wish I'd let Dr. Gold know about the good he'd done for me and Dave during that dark, dismal time in our lives. I'm grateful, too, for the good his foundation will do for future generations of doctors, along with the children and parents they'll be helping. As many of us know, the best doctors for our children are the ones who offer astute diagnostics, helpful advice and hope.

Photo: René Perez


  1. Thanks for sharing. You are right -- parents need hope. We also need time to absorb. Sounds like Dr. Gold has set a standard that doctors should follow. I remember the first time I took Luke to a ped neruo - the appointment started out with the doctor coming to the waiting room to get us (good!) and saying something similar to "Lucus (his name is Luke) you have grown so much since I last saw you!" Then there is the doctor who said Luke had severe mental retardation. The cleft team orthodontist who has NEVER addressed Luke. Funny how we can remember the bad ones. But fortunately they good have far outweighed the bad. I love all of the doctors, nurses, technicians, and receptionists who patiently wait for Luke to communicate with his iPad. The ones who make a point of reminding me what a great guy he is. The pediatrician who never gets upset with how many sick appointments we have because we need to keep on top of things and Luke can't tell use.

  2. My daughter Emily was born very premature. Weighed only 14 ounces at birth & she lived her first 6 months in the NICU, you can imagine we encountered many different types of doctors. So I understand exactly what you are saying, we always appreciated the doctors who were realistic but hopeful with us. We did have those doctors we almost... hated, and who quite frankly my husband wanted to punch. Those that said what they said without feeling & quite frankly without any hope. I try hard to remember that even those doctors we didn't like had a hand in her life. It helps me. We also had the doctors we LOVED, like the one who included me in the circle discussions with interns & residents they had during AM rounds, and who said, " Ok, Mom... what do you think?" Or the transport doctor who original had to tell us the darkest of things but then added..... "We will do our damnedest for her" Or the nurse who
    weeks after her birth simply said, "Congratulations!! She's beautiful" It was amazing that no one had said that... it was all just doom & those words & the way she said them. I still remember. It's been 17 years, and I still remember it like yesterday. Emily... BTW is a junior in HS and is looking forward to being in her HS's musical production of Beauty and the Beast... and is amazing. Just like your Max & his brother and sister.


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...