Thursday, November 18, 2010

Shadowing My Son's Heart Surgeon

That Friday in the fall, for sure, goes down as one of my most amazing days ever.

I shadowed a doctor who is arguably the best pediatric heart surgeon in the southeast United States, and one of the best in the country. Dr. Mark Bleiweis is the director and principal cardiothoracic surgeon for the UF Health Congenital Heart Center in Gainesville.  

When I asked Dr. Bleiweis over the summer if I could follow him around at work some time, I assumed I would observe him making rounds in the intensive care unit at the UF Health Shands Children’s Hospital in Gainesville. I figured I would sit in on conferences and consultations he had with families whose children were having, would be having, or just had open-heart surgery to repair their congenital heart defects. I guessed that I would sit and watch while he handled administrative work. I was right. I did all those things.

I did not think I would step into his operating room. But I did.

I stood in the very operating room my son had been in four years earlier, about to observe the very surgeon who repaired my child’s heart. At first, it was overwhelming.

For at least an hour, I stood there, kind of numb, thinking: I’m here. I’m in the operating room. I am about to observe open-heart surgery on a baby. I am about to see what my son went through when he was 2 years old, after he left my arms that morning on Thursday, June 29, 2006. 

I took deep breaths and stayed focused on being a writer, taking in as much as I could. I focused on being an advocate, learning more about what happens after we heart parents give our children over to the doctors and nurses who promise to take care of them, repair their hearts, and return them to us whole. I focused on not fainting from the sheer awesomeness of it all.

For more than six hours, I sat, stood, paced, stretched, watched, listened and absorbed everything going on around me while Dr. Bleiweis repaired the swollen, failing heart of a baby.

Born with a complex, life-threatening heart defect called complete atrioventricular canal defect, the baby did not have the typical four chambers and four valves that of a normal heart. She had one large chamber and one valve

The baby’s heart defect was so obvious that during the pre-surgery ultrasound of her heart, even my untrained eye could see there were essential chambers and valves missing.

This infant’s heart was working so hard to do its job pumping blood, it was more than twice the size it should have been. Without this surgery, the baby would die.    

I saw Dr. Bleiweis delicately cut away the heart’s protective sac and expose the child’s beating heart. He placed the sac in a solution that makes the flimsy tissue firm and durable; it’s what he would use to make patches to cover the holes in the heart.

The team attached tubes and clamps that led from the baby to the heart-lung bypass machine, which circulates a patient’s blood while the heart is stopped. 

The perfusionist (the person who controls the bypass machine) administered a special mix of drugs called cardioplegic solution to make the baby’s heart slowly stop beating. The perfusionist drained the heart of its blood, and the heart shrank. Throughout the operation, Dr. Bleiweis would ask the perfusionist to fill and drain the heart. It was astounding.

I took turns with medical and nursing students and the anesthesiologist to stand on a stool at the head of the operating table. I gazed over surgical drapes and looked straight down, less than a foot away, into the infant’s open chest as Dr. Bleiweis – using high-magnification lenses – delicately sewed the tiniest stitches into the baby’s imperfect heart.

On this day, Dr. Bleiweis was clearly the leader in the operating room. His requests, directives and commands were clear, direct, exact and instructive. His team might not have always liked what they heard, particularly if he was correcting them, but his criticism was constructive and designed to make his team that much better during the very next operation and every operation after that.

During the four-plus-hour operation, Dr. Bleiweis meticulously patched the holes between the baby’s upper chambers (the atria) and the lower chambers (the ventricles), forming a wall between left-side and right-side chambers. He created two functioning valves – a tricuspid valve and a mitral valve.

His work was so exacting, so intricate and so complete that as I watched the post-surgery ultrasound of the heart, I could clearly see the wall in the center of the heart and the two valves that Dr. Bleiweis created for the baby. The baby’s heart would never be normal, but now it would work as efficiently as it ever could. It was extraordinary.

The science and precision weren’t the only remarkable, memorable aspects of watching this elite team of surgeon, nurses, anesthesiologists and perfusionists.

Dr. Bleiweis, who can operate on the grape-size heart of a newborn baby who’s no bigger than a water bottle, could easily be arrogant or condescending. And yet, he is consistently professional and gracious – to his team, his staff and, especially, to his heart families. I’m still absorbing everything I saw that day, but here are thoughts that have stuck with me:
  • I am amazed and struck that a pediatric heart surgeon must map out – sometimes in a matter of days and other times in a matter of minutes – the best surgical option for a child whose heart is complicatedly misconstructed.
  • There is no room for mediocrity in pediatric heart care – not in preoperative procedures, during an operation, or in postoperative care. Pediatric heart teams persistently reach for excellence. Every single day.  
  • In the operating room, everyone must work cohesively. They must anticipate what the person next to them will need next, do next, ask for next. They must foresee what their patient will do next, will need next. And they must be there, ready. If there are personality conflicts, hard feelings, or bad attitudes, they’re not perceptible. Everyone in the room works harmoniously, willingly, gladly and always with one goal in mind – the care and comfort of the patient.  
  • Dr. Bleiweis and his team sweat not just the small stuff, but the minutiae, every hour of every day. And I – along with hundreds of other heart families each year – am very grateful that they do.  
  • I’m inspired that parents can and do entrust their child’s life to the hands of a surgeon – most often, a person they’ve met only briefly – who promises to repair their child’s misassembled heart. I am even more moved that there are people willing to accept that mammoth responsibility as humbly as Dr. Bleiweis and his team do.  
  • I am utterly, wholly and completely awed that this is what this team does: they fix babies’ hearts. They save babies’ lives. Every. day.


          1. Karen, this was so amazing. I can just picture it all. Dr Bleiweis could never know the depth of our gratitude. Beautiful!

          2. Outstanding post, Karen. I especially love how you tell the important information without slipping into meaningless medical jargon. Not easy to do. You tell us why this is important and what it all means to children and families. Well done!

          3. OMG, Jeni. How did I not know you have a blog, Prayers for Josie?! It's awesome!

            Colleen, thank you. I have to thank Rachel Lawley for her editing help -- she was the one who helped me get rid of all the medical jargon that was in there.

            Thank you for reading and thank you for commenting!

          4. I am touched by the beauty of this piece, Karen. Thank you so much for sharing it with us.

          5. What an amazing experience. And now I'm crying, dammit.

          6. Thank you, Becky! And, oops, sorry. Although maybe now we're even. Your blog has ruined my makeup a few times, too. :-)

          7. It's a beautiful post, Karen, and really shares the impact it had on you. I've read it several times and still really get sucked into your experience - which I am thankful for!

            And thanks for the shout out, though it was just a matter of perspective. You could have written this from so many viewpoints: the parent, the author, the medical junkie...and you did an incredible job of explaining things in a clear and simple way but without hiding your knowledge of the topic or dumbing down your audience.

            Can't wait to read more!

          8. Thanks, Rachel! I can't wait to write more! And go back and shadow again.

          9. Great blog Karen! Ive always associated surgery with a great play in many acts. Each person doing their part to the best of their ability for the common good of the patient. a finely tuned and cohesive team is a beautiful thing to watch! I'm glad you had the opportunity to shadow Dr. Bleiweis!

          10. Beautifully written, Dear Sitser. Can't wait to see the rest of this "work in progress"!

          11. Wow! As a fellow heart mom I got chills just reading this. That must have been a very amazing and emotional experience. Thanks for sharing it!

          12. Wow..thank you for this Karen! you have written it so well! My daughter has this particular CHD and under went this exact same procedure 2 years ago.You can imagine it brought back memories and shivers down my spine..but not in a negative way. I will be forever grateful to the surgeon who repaired my Dounya! Thank you so much for sharing this amazing experience!

          13. Jenny & Alexandra, thank you for taking to read and comment. It was a privilege to observe Dr. Bleiweis at work. And it was so heartening to see how much the team really loves those babies. I'll be writing more soon about my shadowing day. Thanks again!

          14. Hi Karen-
            What an amazing post! I've just stumbled upon your blog here, but you came to visit us in the PICU at Shands back in September of 2009. Our son, Tyler underwent surgery to correct his coarctation of the aorta, performed by Dr. Bleiweis and his wonderful staff. Reading this brought back so many memories, tears, and such an amazement that these tiny hearts can be repaired so well. Tyler is doing marvelously these days, a typical 14 month old. We are forever thankful for Dr. Bleiweis and his staff, and will always remember your kindness during our hours of need :) Thanks for sharing this!

          15. Michelle, Thank you for leaving a comment! So glad to hear your son is doing so well. Our family, too, is ever grateful for Shands and the congenital heart team. And you are very welcome for the visit; it's what I love best about what we do with Broken Hearts. I'd love to keep in touch with you and your family; I'm on Facebook and/or, my e-mail is ktchavez (at) comcast (dot) net. Thank you again for the kind note, Michelle. It really brightened my day.