"A Time I Had Courage"

I love William's second-grade teacher, Ms. Webb. She gets her students -- and especially my 8-year-old -- thinking about life ... in funny, silly and serious ways. One of her assignments recently was to have her students write about "A Time I Had Courage." 

William was only 27 months old the time he had to have the most courage ever, so he has little if any original memory of this time, but we have talked to him about it enough, he has seen photos of this time enough, and he has heard us tell his story to others enough, that he knows a lot about this particular time he had courage. 

I'm not going to tell his story this time, though. He has done that all on his own . With William's permission, here is his story about "A Time I Had Courage."

Medical-Specialty Board Certification: It Matters

“Any doctor can deliver a baby, treat cancer, or declare himself a cardiologist. Certification means the doctor had special training in that field and passed an exam to prove knowledge of it.”

Six years ago, I would have said Associated Press writer Marilynn Marchione was exaggerating in her recent article, Doctors face board specialty 'expiration dates'.

Had my son never landed in the hands of a physician who “declared” himself a specialist, I might still think that way. But he did. So I don’t.

In a previous post about my son William’s heart murmur, I mentioned “the eight-month-long road to a correct diagnosis was ill-paved and rife with potholes.”

I’d like to explain now.

At William’s four-month well-baby checkup, his exam revealed The Heart Murmur. The pediatrician (whom we no longer see) referred my son to a specialist -– “a pediatric cardiologist,” the pediatrician said -– to evaluate the murmur.

If only I’d known then, what I know now: verify credentials yourself. You can’t rely on referring physicians. They might not have verified credentials. They might be assuming a specialist is certified. Or, the specialist might be so rooted in the community that everyone assumes he/she is a board-certified specialist.

You also can’t rely on advertising -- even though (in Florida anyway) claiming you’re board certified in an area you are not board certified in is against the law.

If I could do it again, my first stop would have been here, so that my second stop could have been with a real pediatric cardiologist. Despite what the pediatrician said, the local physician who sees pediatric heart patients is not this area’s “only option.”

Knowing what I know now, I'm not at all surprised this physician misdiagnosed my son. Not just once, but twice. This doctor is nothing more than a pediatrician who completed a pediatric cardiology fellowship ... 35 years ago. Since he's not board certified in pediatric cardiology, there's nothing to show he has pursued any continuing medical education (CME) in this area.

And there have been so many advances in CHD diagnosis, research and treatment over the past three-and-half decades, it hardly seems possible he could have stayed relevant without a lot of CME.

Physicians I love and trust implicitly have told me William’s congenital heart defect (Scimitar Syndrome) is not an easy one to diagnose -- implying I should cut the doctor some slack.

But if it's so hard to figure out, I ask them, then please explain how William’s eventual correct diagnosis was made by a mere pediatrician and pediatric radiologist? Neither of them specialize in, or have had concentrated study in pediatric cardiology.

Really, if not a pediatric cardiologist, then who is imminently qualified to diagnose congenital heart defects -- even those that are difficult to diagnose? If you're going to "declare" yourself a pediatric cardiologist, then you'd better well know what you're doing!

After William's diagnosis, we requested a referral to the University of Florida Congenital Heart Center -- one of this area's many options. The physicians there are extremely competent, very compassionate and ... board certified.

About 15 months after William's open-heart surgery, I filed a formal complaint with the Florida Department of Health. The complaint included misdiagnosis of condition and false advertising. However, DOH declared the physician had done nothing wrong. Nothing. Not even falsely advertising himself.

I also e-mailed the American Board of Pediatrics about the physician’s advertisements. Although the ABP can’t tell me what, if any, action it took, I noticed that about six weeks later, the physician no longer held himself out in advertisements as a board-certified pediatric cardiologist.

Marchione writes in her article, “The next time you’re at the doctor’s office, take a peek at those certificates hanging on the wall. Like gallons of milk, some of them are expiring.”

Better yet, make sure from the start they even have certificates.

The American Board of Pediatrics sponsors a campaign called “Certification Matters.”

And let me tell you: It. So. Does.

An Empty Bed

I’m listening to my 5-year-old son William play on the floor with his cars, helicopter and his cousin Jonathan’s aircraft carrier and I remember the first night he did not sleep at home.

He was 8 months old and had pneumonia. He had been fighting respiratory infections for almost four months. He was so sick by now, he would just lay on your chest, moaning, listless, exhausted. At our insistence, the pediatrician admitted William to the hospital on Tuesday, Nov. 16, 2004. I don’t know if his life was in danger or not then, but we felt like it was. He was so ill and weak, my husband Joaquin and I felt like the next illness might take him from us. We were terrified we would lose William.

I stayed with William in the hospital for three days while Joaquin stayed with our older son Martin, who was 9. I would not leave my baby. But by day four, I was depleted, and Martin wanted me home. Martin and I drove to the house we had moved into only three weeks earlier. An old house with outdated décor and in disrepair. We had not even unpacked. Our home was no sanctuary and I desperately needed sanctuary.

I needed to pack clean pajamas and William’s own diapers for him. And that’s when I realized why I didn’t want to leave the hospital. I did not want to come home to William’s empty bed.

I went to his room and leaned into William’s crib. I knew he wasn’t there. I prayed he would be back in it soon, but worried he wouldn’t be. For a moment, I realized that if we did not figure out what was at the root of William’s health problems, that one day, he would not come home. My heart broke and I sat on the floor by his empty bed and I cried.

I did not come home again to stay until Monday, Nov. 22, when William was well enough to be discharged. That night, I went to his room and leaned into his crib and kissed him. William was home.

On Dec. 15, we drove William 2½ hours south to Shands’ pediatric pulmonary clinic and learned they wanted to test William for cystic fibrosis. The pulmonologist seemed convinced that’s what William had – a progressive, debilitating lung disease that would likely take William’s life before he turned 30. We prayed and held William close. Thankfully, the test was negative. We rejoiced and thanked God for this blessing.

Five days later, on Monday, Dec. 20, my 16-year-old nephew Jonathan died in a car crash. My sister Becky’s only child. He was a beautiful, kind-hearted, funny kid who loved his family. His death came out of nowhere.

After a long night in the emergency room with my sister and family, I came home. I went straight to William’s room, leaned into his crib, picked him up and sat in our rocker. He slept and I held him tight and rocked him. As I sat there, I pictured nothing else but my sister coming home, going to Jonathan’s room and finding only his empty bed. A bed she had no hope of ever seeing him in again. My heart broke and I cried.

Today, our friend Sara grieves for her 17-year-old daughter, Eliza – a beautiful, insanely optimistic child who had more courage, more verve, more doggedness than any child or adult I’ve ever known. A wise and soulful spirit, Eliza.

Becky and I drove to Sara’s house to see what might need doing before Sara comes home from Shands, where she has lived with Eliza in the pediatric intensive care unit for almost 8 months.

I saw a light on in the kitchen and I remembered something Sara wrote to us … that the thought of going home without Eliza makes her ache. I pictured nothing else but Sara coming home, going to Eliza’s room and finding only her empty bed – with no hope left of seeing Eliza sleeping peacefully there again.

My heart broke again and I have cried. For Becky and for Sara. For William’s hard and frightening first year. But most of all, for Jonathan and for Eliza. Your beds are now empty and our hearts will never fully heal, but your lights, your lights will always shine.