Philadelphia Magazine

Did Dr. Norwood Go Too Far? (Part One)

William Norwood became famous by taking risks other doctors wouldn't dare -- and saved thousands of lives along the way. Now, babies have died on his watch, he' been fired, and lawyers are circling. A medical tragedy

By Jason Fagone

Give him a pencil and a pad of paper, and William Norwood can explain the universe. He'll show you why a circle is perfectly round. He'll prove why sound moves more slowly than light. He'll demonstrate why lasers are useful, and why the golf club he's doodled on his pad is a good design for a golf club. He doesn't think he knows everything, but he believes that he can figure most things out. In Norwood's world, there are answers.

This confidence is what made Norwood famous. He is one of the world's best heart surgeons, hailed as a genius by all the People Who Know. Norwood fixes the broken hearts of little babies. Hearts the size of shrunken plums, veins slimmer than angel-hair pasta. A technical virtuoso, Norwood is ambidextrous -- he can stitch with both hands. He's also creative. Using that dogged, scientific mind, Norwood has been scribbling new heart surgeries on his pad for 30 years -- surgeries that, before, only existed in his brain. At this very moment, surgeons around the world are performing Norwoods.

As of February 19th at 12:59 p.m., Norwood was the chief of cardiothoracic surgery at A.I. duPont Hospital for Children in Wilmington, in charge of the Nemours Cardiac Center. In just five years, he had almost single-handedly built the center from scratch. It had become one of the most respected in the country. He was at the top of his profession.

And then, at 1 p.m. that February day, it was over. Called into a conference room, Norwood saw the chief operating officer of the Nemours Foundation. For weeks, the fda and the state of Delaware had been investigating an experimental medical device at the Cardiac Center -- a device used in a new type of procedure, performed on Norwood's watch by his chief of cardiology. The hospital said later it believed some medical staffers had "failed to comply with hospital policies regarding informed consent and the use of a medical device." The coo extended his hand and told Norwood the Cardiac Center needed "new leadership."

It wasn't the first time he'd had to go. Norwood breeds naysayers everywhere, because not everyone has Norwood's confidence. Some call it arrogance, but he doesn't care. Move forward. Advance the field. Those are the beliefs that keep pushing him, even when colleagues have questioned him and lawyers have sued him. He's been knocked around a little, sure, but he's always made it through. He's always found another hospital only too happy to have a surgeon of Bill Norwood's stature.

But this Nemours situation was different. Not only was Norwood shown the door; he was escorted out of the building by security. This was a great surgeon, his name already in the history books, walking the first part of the lonely quarter-mile corridor at duPont with a rent-a-cop by his side. Oh, this was a sea change, and it would only get worse. He started reading dark tidings in the newspapers, rumblings of future lawsuits over babies who'd been injured or died during his time at Nemours. Now that he was vulnerable, how many of his patients would lawyer up? Had Norwood finally lost the ethical battle he'd been fighting for 30 years -- caught in the gap between the human desire for progress and the equally human unwillingness to bear the cost of it?

You want costs? Here's a cost. A great surgeon is sitting in his Wilmington home, doing nothing. Not operating. Not saving babies' lives. Might as well take a crowbar to Lebron James's kneecaps, a hot poker to Scorsese's eyes, for all the talent that's wasting away. But that's something that bothers Norwood's supporters more than it bothers him. No, the worst thing for Norwood has got to be this: He's finally run smack up against a problem he can't work out. His pad and pencil can't resolve people's fundamental ambivalence about the value of medical risk-taking.

So it's late evening, April 1st -- fine day for a cruel joke. Norwood's on the phone from his house. He has nothing to say. Only small talk about his son, William, a golfer on the Hooters tour.

"Hooters is being sued," says Norwood, abruptly. Some "boy-girl sort of thing," he says. Sexual harassment at Hooters -- isn't that the whole point? The doctor is incredulous: "Excuse me?"

Then, softly, a wounded admission:

"The world is getting tough, you know."

When the nurse woke her at 2 a.m., Michelle Madden knew her daughter was dying.

"I'm losing her," Michelle said.

When she got to the Intensive Care Unit at Nemours Cardiac Center, the big double doors swung open, and Michelle confronted her worst nightmare. Mykenzie Madden's heart had stopped. A team of nurses and doctors hovered over Michelle's little "Peanut," trying to restart it. Mykenzie was just seven months old. Michelle started crying.

"You have to be strong," the nurse told her. "If you feel Mykenzie is suffering, you are the only one who can tell us to stop."

Michelle couldn't understand how things had gone so horribly wrong. "We figured we were getting out of the woods," she says.

She had good reason to believe that. When Michelle first came to Nemours in February 2003, Mykenzie was very sick. She had a condition called hypoplastic left heart syndrome (hlhs), which meant the left side of her heart was underdeveloped. If she didn't have three operations, all before she turned about two years old, Mykenzie would die. The first, the most difficult, would take place days after Mykenzie was born. That was why Michelle had come to Nemours. She had come for William Norwood -- the man other mothers claimed had "hands of God," the man who had invented the operation her baby needed.

Michelle says the doctors at Nemours told her that once Mykenzie made it through the first surgery, she would do fine. Even better, she says, the doctors told her they'd replaced the traditional third surgery with an innovative new procedure that was less invasive. In the new procedure, the heart would be implanted with a tiny tube of platinum called a "stent," which would channel blood between two key structures. She thinks they talked about altering the second procedure, too, to prepare for the third. Michelle doesn't remember details, only that they laid out a plan.

In February, Mykenzie had her first surgery at Nemours. For a while, it was touch and go. Eventually, though, she recovered, and Michelle took her home to South Jersey.

They came back for the Stage Two on August 22nd. Norwood assisted in the surgery. But then fluid started to pool around Mykenzie's lungs -- so-called "pleural effusions" -- and she couldn't breathe on her own.

After a 12-day struggle, Mykenzie's heart stopped on that terrible night in the CICU. Michelle isn't sure how long she watched the doctors try to restart it. After maybe an hour -- it felt like forever -- she told them to give up: "I yelled ‘Stop, stop, she's gone!' and ran to her … and picked her up in my arms and held her as hard as I could."

Michelle was devastated, but she wasn't angry with the Nemours doctors. "I just figured surgery didn't work for Mykenzie," she says. (The hospital declined to comment for this story.) Then, months later -- after the funeral, after the depression, after the Zoloft -- she got a call from a friend. Channel 10 had run a TV news segment about William Norwood. The segment said he had been fired over a controversy related to the stent that Mykenzie would have gotten in the third surgery, had she lived. The stent, Michelle learned, was experimental, and hadn't been approved by the fda.

The next day, Michelle e-mailed some of the moms she'd bonded with during those long hours at the Cardiac Center. They compared notes: All had different stories of what doctors had told them and when. They knew for sure that several babies who had developed serious complications last summer did so after the Stage Two surgery. And they realized they didn't understand why. In fact, they realized they didn't understand much of anything.

And they began getting angry. Because their babies were dead.

If you knew he was a physician but didn't know what kind, you'd guess he was a country doctor. The novelty tie, dotted with cartoons of little kids. The neatly combed wave of white hair. The sturdy glasses. The meaty, enormous hands that seem like they'd be liabilities in a high-tech operating room.

But the first impressions are wrong. William Norwood is most comfortable in the OR. He likes it so much, he's trying like hell to get back there -- and failing. (Norwood's lawyer is preparing a complaint against the Nemours Foundation.) "It's impossible for me, at my stage and stature, to get a job anywhere," says Norwood. "It's impossible. Particularly under these circumstances." Has he been trying? "Oh, are you kidding? Think I'm sitting on my thumbs? Boy. What would you do?"

He is 63 years old, and it's getting late to start over. He'd like to stay in the area; he's got a house in Wilmington; twice divorced, he now lives with his scrub nurse of 28 years, Jodee Desilets; he has two grown sons (golfer William, 38, and Jonathan, 22, who is in school at the University of Rochester).

But on the morning of April 23rd, Bill Norwood isn't operating. Instead, he's sitting in the cavernous Green Room of the Hotel du Pont in downtown Wilmington, poking at eggs Benedict.

He is out of his element, and it shows:

"Doing heart surgery in these life-and-death situations is … "

He pauses. Five seconds. Ten seconds.

" … not just demanding of dexterity. It is also very emotionally demanding. It is very very very difficult to be in a situation where things don't go very well. The pressure comes from within -- not so much … "

He leans forward, puts his hands on his chin, pauses another five seconds.

" … not so much directly or overtly, but … "

Norwood grabs the spoon with his right hand, then the knife. He smooths the tablecloth.

" … it's there."

Norwood doesn't express emotion well. He doesn't think that way. He thinks scientifically, where life is a set of problems whose solutions require only focus, dedication, logic and time. Look at the era that produced him. Check him out in Los Alamos in the early '60s, where his father, a chemist, was learning how to make nuclear bombs explode in specific shapes. The Manhattan Project put food on the table. Young Bill dreamed, of course, about becoming a fighter pilot.

After a brief marriage and divorce -- and a short stint in the Air Force Academy -- Norwood ditched the pilot path and went to med school at the University of Colorado, then became a resident at the University of Minnesota Hospital. That's where he met surgeon Aldo Castaneda, who changed his life.

Castaneda was a pioneering heart surgeon, a man willing to take big chances to make progress. His predecessors were world-renowned for their daring deeds. There was the ballsy German who discovered cardiac catheterization in 1929. Other folks were afraid to try it, so the German cathed his own heart -- then walked to the x-ray lab to prove it was possible. He was promptly fired -- and later won the Nobel Prize. Then there was Robert Gross, a surgical resident in Boston in 1938. Gross wanted permission to try the first-ever closed-heart surgery. His boss said, Hell no. But when the boss went on vacation, Gross did it anyway, and made history. He got fired, too. And you can't forget Minnesota's own C. Walton Lillehei, who was still on staff when Norwood arrived -- Lillehei, the man who braved rivers of his own patients' blood to invent open-heart surgery in 1954.

"Somebody said a long time ago, ‘If I succeed, it's only because I stood on the shoulders of giants, looking forward,'" says Norwood. "And I can name the giants I stood on."

Castaneda was a giant. Castaneda could take a kid with zero function -- couldn't breathe, couldn't pump blood -- and make him normal. "The possibility of that kind of result is what has always driven Bill," says a very close confidant of Norwood's who has known him for 30 years.

After completing his residency and a Ph.D. in biophysics, Norwood followed Castaneda to Children's Hospital Boston. There, the young doctor started hunting around for something big to do that might help him escape Castaneda's shadow. Trouble was, "The easy stuff had all been done," says Peter Lang, a senior associate in cardiology at chb who was there at the time. Thanks in part to Castaneda's research, doctors could now correct most types of congenital heart defects. One, however, remained a problem: hypoplastic left heart syndrome. hlhs was a real mind-blower. Kids born with hlhs had virtually no left ventricle and a tiny aorta -- the two structures that, together, pump blood to the body.

Kids born with no right ventricle -- well, doctors could fix that. The right ventricle pumps blood to the lungs. By the late '70s, they had figured out how to reroute the heart's plumbing so the stronger left ventricle would do all the work.

But that wasn't possible with hypoplast kids. With no left ventricle, a hlhs baby could turn ashen and die within days, if not hours, of birth. Doctors didn't think they could flip-flop the procedure; how would the weaker right ventricle handle all the pumping alone? But Norwood thought he could do it, could make the right ventricle pump blood to the body and the lungs.



Go to PART TWO



Originally published in Philadelphia magazine, June 2004
 

Change text size
Print

Email

Write a comment
 
 

User comments

This Doctor
Posted by | Mar. 25, 2008 at 3:31 PM
COMMENT:
This doctor almost killed my child. The comments made in this article make him sound like a saint, he is not. My daughter is suffering now from all of his MISJUDGEMENTS. He is a doctor who I will now hate for the rest of my life and my daughter will never understand because of medical pratice. Thank you very much Dr. Norwood.
I taste bile when I hear his name.
Posted by | May. 20, 2008 at 9:43 AM
COMMENT:
My daughter died 14 years ago under Dr. William Norwood's care. And my choice will haunt me for the reat of my life. This article should mention the lives lost. The week my daughter died so did 3 other babies. I have NO kind words about this man.
Where is part 2?
Posted by | Jun. 13, 2008 at 5:10 AM
COMMENT:
I would like to read part 2
Our son is 17 years old, hlhs, and doing well.
Posted by | Jun. 19, 2008 at 10:25 AM
COMMENT:
Brett was born in 1991. Dr. William Norwood operated on Brett at 3 days, 5 months, and 13 months at Children's Hospital in Philadelphia. The surgery was experimental at that time. Thank you William Norwood for being a dedicated, driven, innovative, and caring doctor.
Our son was born with HLHS
Posted by | Jul. 12, 2008 at 11:37 AM
COMMENT:
My son was born with HLHS. Dr. Norood did all three of his surgeries at Dupont Children's Hospital. I still remember the day that we found out that he had HLHS. I was still pregnant with him. The choices were: do nothing and he would die, have a heart transplant and wait for a donor (mean while he would continue grow weaker and chances are not survive the surgery) or have the Norwood procedure and then the other two stages within the first year of his life. We chose the Norwood procedure. We understood that he may not survive the surgeries. But at least it gave him a chance for survival. Now he is ten years old, and I am thankful that God gave Dr. Norwood the ability to operate on tiny little hearts.
survivor
Posted by | Jul. 30, 2008 at 10:26 PM
COMMENT:
Dr. Norwood is the reason I am alive. Im now 22 years old. 22 years ago, Bill Norwood performed his arterial switch procedure on me, because I was born with transposition of the great arteries. The procedure was still experimental...only 3 people in the world could do it. I am sorry for your losses...but we must remember that without innovators, there would be no progress.
thank you dr. norwood
Posted by | Sep. 3, 2008 at 7:07 PM
COMMENT:
I had two children with HLHS who died. My third child with HLHS, Jodie, was operated on by Dr. Norwood at CHOP in 1989. She is now 19 years old and is doing great. I have very mixed emotions about Dr. Norwood. I am saddened by this article and for the children who died under his care, but will always be grateful that Dr. Norwood gave Jodie a chance at life.
Think about it...
Posted by | Sep. 21, 2008 at 8:51 PM
COMMENT:
I am an employee of The Children's Hospital of Philadelphia, and everyday I see the amazing results of what pediatric cardiac surgeons do. None of these operations come without risk, and if some of these surgeons didn't take risks, there would never be any improvement of outcomes. Babies with HLHS would still be dying, and the parents would want to know why we can't help them. I think we need to realize that he cared for these children and wanted to find a better way to help them.
Thank you to Dr. Norwood
Posted by | Oct. 11, 2008 at 9:40 AM
COMMENT:
Our son Eric was born in Germany with HHS and no one could help us back in 1991. My hospital contacted Dr. Norwood in Chop, and Eric flow over there. Had the 1st surgery done with succeess. We know that we had a long way in front of us. We made it to the 2nd, but not to the 3rd surgery. Eric had a heart attack on Feb. 11, 1992. The Germany hospital told us that Eric would die in less then 48 hrs. So the next change was to transplant after talking to Dr. Norwood. Six weeks later Eric received a new heart. Unfortunately Eric died 13 years later. We were very thankful for those 13 years we had with our son. Eric did everything he wanted to do in his age group (playing Soccer, running,playing in the sandbox and so much more). Without Dr. Norwood we would have had nothing. Life is not easy and sometimes you have to take a risk. If someone would ask me today, if I would to this again, my answer would be YES.
Thank you Dr Norwood
Posted by hlhs07 | Nov. 24, 2008 at 3:11 PM
COMMENT:
I personally did not have Dr Norwood for my son's procedure and i would like to thank him personally one day for developing the Norwood. I am so sorry for everyones loss of their children but any surgery heart or not is a risk for losing your life. Dr Norwood did nothing but try to help develop new things for our children or family to live! I am thankful for him or my son that was born last year with HLHS that he will not be here today, His life is not guaranteed but i know with the Norwood procedure my son has a chance at life no matter how long he lives. Dr Norwoods surgeries are to give your child that chance and if you feel hate and resentment that is your anger that your child is loss, you should be thankful that he tried to save your child.

Post a comment

To comment on this article you must be logged in. Not registered?
Philadelphia It List

Virtual Design Home 2008

Can't make it to the Design Home? Visit and tour our home from the comfort of yours! Stop in with your family and friends to tour the lavish rooms, browse...
 
 

Foodies! Where do you dine?

Tell us what restaurants you visited in the past month and write a review on your favorite dishes.
 
 

Save a Bag, Save a Dollar

Visit a Bonterra and Fetzer wine tasting and receive a green shopping bag and $1 instant rebate card. See the list of Stores and Tasting Dates here.
 
 

Philly Mag's Mix AT Six

Introducing a new reason to love Thursday nights with great food, great drinks and great value! MIX AT SIX is $6 cocktails, $6 wines and $6 off entrees at participating...
 
 

Engagement Announcements Sponsored by Eventricity

Upload your photo. Tell us your story. Win $100. Each month, 1 couple will appear in the pages of Philadelphia magazine, and win $100 from Eventricity.