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Issue Date: March 2010


Best Doctors 2010: Real-Life Hero

Dr. Raymond Onders
Betsy O'Connell

Mention Dr. Raymond Onders, and you’ll likely get a quizzical flash of recognition, “Isn’t he the guy who operated on Superman?”

Yeah, Onders is that guy, the University Hospitals doctor who implanted a diaphragm pacing device in paralyzed actor Christopher Reeve in February 2003.

News of the operation captured the attention of broadcast and print media around the globe. Reeve and his wife, Dana, were vocal advocates for spinal cord research and became the unofficial faces of the pacing device — and Onders’ work with it.

But if that’s all you know about Onders, you’re missing it.

You should also know about Alex Malarkey.

Alex was 6 years old. His family had recently moved to the small town of Huntsville, Ohio, and his new baby brother had just been born the day before. He and his dad, Kevin, were on their way home from church when their car crashed at a rural intersection, leaving Alex paralyzed from the neck down.

It could have been worse. “No one ever thought he would survive, let alone thrive,’’ says his mother, Beth.

She became Alex’s main caretaker once he returned home. She was also his champion, researching treatments and treatment centers. In late 2005, her efforts led them to the Kennedy Krieger Institute in Baltimore. There, physicians recommended trying to get Alex off the ventilator, which pushes air into a patient’s lungs. A specialist recommended Onders, who was already working on FDA approval to implant the diaphragm pacer in a child.

When Beth and Onders finally talked, the connection was immediate. “He was the first person that I talked to who had all of the knowledge of the weird things spinal cord patients do,’’ she says, noting how Alex’s body might over-respond to everyday challenges such as a scrape or a virus.

Onders’ easy manner was also helpful during the three-year wait for FDA approval. “He is very humble, very, very easy to talk to,” Beth says. “It comforts you right away.’’

In January 2009, Alex became the youngest patient — the first child — to have the pacing device implanted during an hourlong procedure.

Electrodes attached to Alex’s diaphragm are connected with wires to an external control and battery pack that’s about 3 1/2 by 5 inches. The electrodes stimulate the muscles and nerves, causing the diaphragm to contract and pull air into Alex’s lungs.

“Alex and his whole family really have a great attitude,’’ says Onders, who can be seen joking around with Alex in videos and photos on a family Web site.

And that attitude continued despite some setbacks in the past year. Alex had scoliosis, and the substantial spine curvature required another surgery last year. “It set him back,’’ but Onders expects Alex to eventually get off a ventilator. Today, Alex has several periods a day where he can go for 10 to 15 minutes off the ventilator.

Since Alex’s surgery, Onders has done at least seven similar procedures and has consulted with doctors around the world interested in the surgery. He is also conducting tests on animals to implant the device without any external incisions.

But when Beth Malarkey calls, Onders gives her and Alex his full attention. “I’ve called him at 3 o’clock in the morning, and he’s responded,’’ she says.

Comments:
Wednesday, March 03, 2010 9:13:58 AM by Beth
Doctor Onders is not only a "top doc" but he is also a genuinely nice person. Thanks Dr. Onders for the work that you do!!!!!
Monday, March 19, 2012 9:27:19 PM by Carolyn Graham
My son (age 24) had this wonderful procedure done today by Dr. Onders. I agree with Beth, Dr. Onders is a caring person as well as a "genius" in my humble mother's opinion. My son is sore, but smiling and breathing on his own a few minutes every few hours. I have waited for this moment for almost a year since his wreck.
Thursday, July 12, 2012 11:08:13 PM by Debbke paterno
My brother has Al's and I would like to know how and we're I could have the diaphragm for his breathing is there anyone I could call so I could explain how far along he is he is doing pretty good except for his breathing please I beg you give me someone I can get in contact with it would greatly help him
Thank you Debbie paterno
My e mail is. Debz605 @ aol.com
Thursday, February 21, 2013 8:35:05 PM by Heather
I do not have ALS however my diaphragm is paralyzed after a failed epidural for a c section in which my phrenic nerve was damaged. I was told by the pulmanologist and nurrologist treating me now that I need diaphram plication ( spelling?) and a diaphragm pacemaker. There is no doctor doing these surgeries in my area but I don't think I can struggle much longer , I have a four month old son and its getting harder to take care of him. I am looking for a new set if doctors who will treat me according . If any info please email me goodvsevil69007 @ Ymail. Com

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