Always Grateful

My now 6-year-old son William spent most of the first year of his life sick. Constantly sick. No one seemed to be able to figure out what was wrong. One doctor kept telling us William was sick because he was in daycare.

Finally, just 12 days short of his 1st birthday, William was diagnosed with scimitar syndrome (sometimes called partial anomalous pulmonary venous return). A year after that -- four years ago today -- on June 29, 2006, William's beautiful little heart was repaired at Shands Children's Hospital at the University of Florida.

We are ever, ever grateful to Dr. Mark Bleiweis for his special gift of fixing babies' hearts. We thank God often, still today, for pediatrician Dean Dalrymple and pediatric radiologist Charles Williams for their sense of urgency, curiosity and diligence in getting to the root of William's illnesses. If not for these amazing people, we might still be wondering what was wrong. And we are always thankful for William's pediatric cardiologist, Dr. Jay Fricker, who makes sure William continues to do well. 

One of William's biggest supporters and cheerleaders, though, doesn't often get public praise, but he certainly deserves it for his eternal patience, his constant support, his everyday care and never-ending hugs and love. I think God specifically chose Martin as William's big brother because He knew that William would have a rough start in life and that Martin would take extra-special care of William. They have a beautiful brotherly bond, especially for siblings who are nine years apart. They are best Bubbas.

After four years, 14 years, 40 years, we will always pause on this day -- June 29 -- and thank God for His presence in William's and our lives, and for guiding us to the people William needed to be whole and healthy.

Happy Heart Day, William. We love you and are so glad you are here and whole and healthy and happy.

Familiar Song, New Verse: Talk!

Well. This explains a lot: Florida's doctor discipline system not tough enough, critics say / Most cases dropped, few serious penalties imposed.

It's no secret in Florida that the Department of Health and the Florida Board of Medicine, in particular, are lax in regulating, policing and disciplining Florida's medical profession. Even though I've known this for years, reading this article makes my stomach churn. It makes me angry.

This isn't about a hair salon allowing unlicensed cosmetologists to cut hair in their shop. It's not about whether yacht and ship brokers and salespersons have a license to do business.

This is about physicians appropriately and accurately treating patients, and the State of Florida taking appropriate action when they don't. Treating patients -- people. Our children, our spouses, our parents, our siblings, ourselves.


Physicians are not infallible. But worse, some physicians aren't honest about their credentials or limitations.

We are so quick to openly and publicly pan a restaurant over lousy customer service. We tell our friends all about the hairstylist who left us looking like we went to a pet groomer. We will tweet all day long about how bad the in-air service is on a flight we're on.

But when it comes to telling someone about a bad -- or worse, harmful or life-threatening -- experience with a physician, dentist, nurse, anesthetist, or other health-care professional, so many of us tiptoe around the subject.

Even if Florida dismisses your complaint, you still have every right to talk to people about your experience. Especially if it jeopardized your life or the life of your child, or other loved one.

Bad restaurant service is temporary. Hair grows back. As long as you get safely from point A to point B, who cares if the flight attendant was rude or nice, or if the in-flight food was fabulous or foul? 

Physicians, dentists, nurses, anesthetists and other health-care professionals have the potential to improve your life or end it. If your health-care experience was a threat to your well-being or life, tell someone. Tell everyone.

Happy Mother's Day, and Merry Christmas

Yes, I know Mother's Day was Sunday and today is not Sunday. But I love my brother's Facebook post about our Christmas stockings so much, I begged him to please let me share it here. So, I give you my first guest blog. From my brother, Bob. 

Happy Mother's Day, and Merry Christmas

by Bob Thurston

Mother's Day is a good day to talk about Christmas stockings.

Every December 25, I dig into a stocking my mom knitted by hand before my first Christmas. My brother and sisters have one just like it. So do our spouses, kids and grandkids.

My favorite Christmas memory is of waking before dawn with my brother and sisters and plundering our stockings, knowing they held enough treasure to tide us over until breaking light made it safe to nag our parents out of bed to open presents. We rummaged through a king's ransom of knick-knacks and candy that stretched the red, green and white yarn of the stocking to its limit: distorting our knitted names at the top, distending Santa's angora-bearded face at the shin, and bulging the crossed candy canes at the arch.

Only now do I marvel at how it all got in. As a kid, I just dug and delighted, giggled and sighed, pulling out an astonishing assortment of the wondrous, the silly, the sentimental and the practical: candies and tree ornaments; puzzle books and playing cards; Matchbox cars and Army men; jacks and Slinkys; toiletries and school supplies; and a plump Florida orange nestled in the toe.

When we became parents, we learned the how-to. The orange is your anchor, and a magazine or a thin pack of notebook paper, tucked in around the calf, props the stocking open – the better for fitting in the bigger things. When those are all in place, you drop in the doohickeys and the thingamabobs.

Mom's other secret is Dickens: keep the Christmas spirit all year long. Bargain bins, clearance shelves, impulse items at check-out – stocking stuffer nirvana.

Through the years, those stockings have been stuffed and emptied, torn and mended, time after time.

They captivate our children and make children out of us.

And even after we've dug down to that orange in the toe, they overflow with a mother's love.

Happy Mother's Day, Mom. I love you.

When Doctors Fail

Adventures of a Funky Heart writer Steve Catoe posted a story I sent him over the weekend about a heart mom I know who lost her baby at 40 days old.

Michael should still be here. He would be 2, and this Sunday would have been his third Mother's Day.

One mom who read this post asked if there was anything she could do. There is: Tell every heart parent you meet and know to be sure their child is seen and evaluated by board-certified pediatric heart specialist. Trust your instincts. Ask questions. Expect answers. Don't tolerate ego. Demand to be part of your child's care and treatment. Advocate, advocate, advocate.

When Doctors Fail

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.

Spring is Bittersweet

George Lee Thurston III
Oct. 1, 1925-March 20, 2001

My father was genius-smart, oddball-strange, comedic-funny and present-aloof. After his terminal diagnosis, he stayed genius-smart, oddball-strange and comedic-funny. But finally, thankfully, he became simply present.

Diagnosed in December 1998 with chronic obstructive pulmonary disease, his pulmonologist gave him about two years to live. Always pushing the limits of everything, he lived two years and three months longer.

Dad knew for a long time that chronic lung disease would eventually get him. When he was 19 in 1944, he had a thoracotomy to cure his stubborn tuberculosis. He smoked cigarettes in his 20s and 30s. When he was 70, he had open-heart surgery for quadruple bypass and placement of a mechanical aortic valve.

After his COPD diagnosis, Dad lived slow, but actively until about November 2000, when his real struggles began. At first, his scoliosis stopped him in his tracks. Dad was known for his asymmetrical shoulders and “tilted gait,” both caused by sliced muscles during the thoracotomy. His curved spine was painful. Shortly after Thanksgiving 2000, he parked himself in his recliner and left it only to, well, you know, and go to the doctor. We called hospice. Dad wanted to die at home, with his family, with no extreme interventions.

It’s not all sad and depressing. We knew Dad was dying. And it was a gift. We got what many people don’t get: not only a chance to say goodbye, but a chance to reminisce, recapture and renew our love and compassion for each other.

As he drew nearer to the end of his life, he opened up more and more with each of us, letting us know that while he wasn’t always there while we were growing up, he was here now and he loved us deeply, and he always had.

A month before he died, on Valentine’s Day, I took my opportunity to tell him things I had told him before, but it had been years, and to tell him things I hadn’t said yet. It was a blessing.

It’s only fitting that my father died on the first day of Spring. Because in dying and death, there was also rebirth. Thank you, Dad, for sharing your life during life, and especially for sharing your life in your death. 

My Valentine’s Day Letter to My Father

Feb. 14, 2001

Dear Dad,

Your mother taught me a great lesson in life -- don’t wait too long to say what you want to say. So, I’m not going to wait until it’s too late to give you this letter.

I have to tell you how hard it is for me to see how fragile you are. I watch you struggle to do what used to be so easy for you and I think to myself: This is the man who heaved a heavy canoe off his camper, lugged it to a boat ramp and then canoed for several miles down a river. It hurts to see you in such pain. I wish I could make your pain go away.

I watch you struggle with your thoughts and your train of thought. I’ve taken solace in the last couple of years that while your physical health has been failing you, your mind has stayed strong. Your mind has always been your greatest asset. I know you get so frustrated when all your synapses don’t fire properly and I hurt inside to see you struggle.

Since I was 15 and Mom was almost killed in that car accident, I’ve had periodic dreams about her dying. I cannot even tell you how many times I’ve woken up with tears streaming down my face, thinking she was dead. Ever since then, I have known what her death will do to me. It will be a horrible and devastating thing.

I don’t know if it’s been those dreams that have kept me aware of that and unaware of what you’re leaving me will do to me, or if it’s because you’re such an unemotional creature. But it’s only been in the last few months, and especially the last few weeks, that I’ve realized what a horrible and devastating thing it will be when you die. I know you aren’t afraid of it, and that helps some, I suppose, but, still, it will be so awful, Dad, and I wish it never has to happen.

But it’s going to and I can see it won’t be all that terribly long from now. Do you know the worst part about someone dying? After someone dies, you can’t see them anymore. You can’t touch them. You can’t hug them. You can’t smell them. You can talk to them, but they won’t answer you – at least not in the same way as when they’re living.

You know what I like to think, though? I like to think you’ll go wherever it is your father  -- and Hopa and all your other ancestors – are, and you’ll get to see them and talk to them and be with them again. I like to think that. I hope it happens for you.

I also like to think that you’ll do what your mother does sometimes -- which is visit me. Martin and I were driving home one afternoon from preschool -- it would have been early this year or maybe sometime last year. Martin started asking me questions about his Great Gramma Nama and all of the sudden, I cannot explain it rationally, but she was there. I mean THERE -- watching, listening, smiling. I absolutely cannot tell you how real and powerful her presence was, but Nama was there in the car, riding home from preschool with us.

I turn a phrase, edit copy, or make a writer go ask more questions, and I know those are talents I inherited from you. I make a pun, tell a joke or do some goofy thing at the office, and I know it’s because I learned it from you. I have you to thank for my quick wit and sometimes-caustic humor.

I smell smoke from a chimney during a walk in my neighborhood, or feel flames off a fire and I remember all the times you took me camping and canoeing and fishing. I bait a hook and cast a line and know you taught me to do those things. I smell coffee brewing or Beanie Weanies steaming or eat a ham-and-mustard sandwich and I think about campground meals and picnic lunches at Lake Hall. I watch the sun come up and remember the time you stopped at Carrabelle Beach -- just to show me the sun rise over the water.

There were a lot of things you didn’t do when I was growing up, but the things you did, you did well and the impressions, obviously, are lasting.

I wish you didn’t have to go. Ever. But I know the day will come. I won’t be ready. Ever. But these are all the things I will like to think.

I love you.

Karen

Scimitar Syndrome: A Discovery Highlight

If you’d told me in high school that one day, I would read abstracts from the Annals of Thoracic Surgery with the giddy delight of a 5-year-old eating an ice-cream sundae, I would have burst out laughing, and, well, I would not have believed you for even a second.

But here I am (more than two decades later), all excited over an abstract I found online from a 2009 edition of the Annals of Thoracic Surgery. The article is about a multicenter study in Italy of patients with scimitar syndrome.

Scimitar syndrome is a rare variation of partial anomalous pulmonary venous return, a congenital heart defect. And my almost-6-year-old son is one of the 1-3 in 100,000 babies who are born with scimitar syndrome, and one of the 1 in 125 babies born each year in the United States with a congenital heart defect.

I’ve learned a lot about scimitar syndrome since those first months after William’s diagnosis in March 2005. And finding the abstract today was a highlight of my discoveries.

The study included 26 patients. Most of the patients presented like my son, with symptoms including recurrent upper respiratory tract infections and pneumonia. Eighteen of the patients had an intraatrial baffle repair, while eight patients had their scimitar veins moved and re-implanted at the left atrium.

Those were the two repair options William’s brilliant pediatric heart surgeon — Mark Bleiweis at the University of Florida Congenital Heart Center — discussed with us. He said he wouldn’t make a decision about which repair to use until he saw William’s heart. Then he would figure out which would be the better solution.

Once inside William’s chest, Dr. Bleiweis thought William’s left atrium was a bit small to accommodate the right pulmonary veins, so he created an intraatrial baffle — a tunnel directing the blood flow from William’s anomalous right pulmonary veins (located near the junction of the inferior vena cava and the right atrium) into his left atrium, where it belonged.

We knew then that Dr. Bleiweis knew what he was doing, and we trusted him. Now I’ve found a study of 26 patients over a 10-year period that shows “the intraatrial baffle repair seems to have a lower incidence of postoperative complications and a better patency rate, at last follow-up, than the re-implantation of the scimitar vein onto the left atrium.”

We’ll take it.

The Heart Murmur

I did it when my 14-year-old son was a baby. And I was doing it now. Holding my breath. Praying. Watching the pediatrician’s face. He was listening to my 4-month-old son’s heart and lungs during a routine well-baby check-up.

One minute. Two minutes. My son’s chest. His back. Three minutes. Four minutes. His chest. His back again. This is taking too long. He is listening to my baby’s heart too long. I closed my eyes and prayed.

The doctor rolled back his chair to look at me. I looked at him, thinking, praying ... Don’t say it. Please don’t say it.

“I hear a murmur.” He said it.

I pulled my son, William, tighter to my chest.

“Most of the time, these things turn out to be nothing, Ms. Chavez,” the pediatrician gently told me. “But this sounds significant; I’m afraid this is going to turn out to be something.”

“I’m going to refer you to a pediatric cardiologist,” the doctor explained.

My own heart dropped. There was a problem with my baby’s heart. His heart.

I wanted to rewind that day. July 30, 2004. It had been just a normal day. Now it was anything but.

“If this is something,” I asked the nurse practitioner on my way out, “what do I look out for? How will I know if something has happened or has gone wrong?”

“He’ll have trouble breathing, he’ll look blue,” she answered in a hurry as she went to see another patient. But she looked sad.

That was it? That wasn’t nearly enough information. I was terrified. I cried all the way home from the doctor’s office. I reached toward the backseat, trying to hold William’s hand. I realized I had to tell my husband our infant son has a heart murmur and needs to see a pediatric cardiologist.

The innocence and naïve joy of having a new baby were gone. Everything changed that day. Our lives were never going to be the same.

Unfortunately, the "pediatric cardiologist" we were referred to in Tallahassee was not board certified. The eight-month-long road to a correct diagnosis was rife with potholes and detours. We spent five months in the hands of physicians who were poor listeners and even worse diagnosticians. The local "pediatric cardiologist" twice failed to correctly diagnose William's heart defect. 

It was a fearful, heartbreaking, stressful time. William was never well. I developed Bell’s palsy that September and my 16-year-old nephew was killed in a car crash five days before Christmas.

After that, getting William well took on new meaning and our efforts to do it amplified. We “fired”’ our pediatricians and found a new one. One who listened, examined and treated carefully, methodically and cautiously.

William’s correct diagnosis – scimitar syndrome, a rare variation of partial anomalous pulmonary venous return – came just days before his first birthday. (William's version of scimitar syndrome includes an underdeveloped right lung that receives no blood flow; he functions entirely on his left lung. He also right pulmonary vein stenosis, mild right ventricular hypertrophy and superior vena cava stenosis.) The diagnosis was the result of the divine meeting of the medical minds of two thorough and thoughtful physicians. 

The first thorough and thoughtful physician was our new pediatrician who had immediately questioned and investigated the diagnosis that William’s heart murmur was functional. He thought it sounded pulmonary and was concerned because he could hear the murmur in William’s back. Functional murmurs, he said, typically can only be heard through the chest.

The second brilliant mind was a pediatric radiologist who had read two sets of William’s chest X-rays – four months apart – and noticed the same problem in each: William’s lungs were unequal in size and function. Of all the patients that pediatric radiologist sees in the hospital and in his radiology practice – and he remembers my son and these minute details of his lungs. That still amazes me.

Once William was diagnosed, we were referred to the UF Health Congenital Heart Center in Gainesville. That's when everything started to get better. We learned so much about William's particular condition and we no longer feared that he would drop dead while he was running in the yard with his brother. And wonderfully, at UF Health, we continued to find doctors who listened, examined and treated carefully, methodically and cautiously.

I hug, kiss and tell my children every day that I love them. I stare at them and marvel at their beings, their health and their lives. I will never forget William’s four-month, well-baby check up and hearing those words “heart murmur.”

Those words and all the days that have followed have changed our lives forever. I would not have believed it then, but I know now, they have changed for the better. Our family is a stronger family. We appreciate our lives in ways we never did before. We have an incredible team of physicians for William's continued care. We have met hundreds of families online and in real life who have similar experiences as ours. We have William's heart to thank. We didn't think it then, but we know now, we wouldn’t have William’s heart any other way.



Updated: Feb. 3, 2018.

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.