grace led in life: grieving a hero...

This is a sad update to write...

(I'm almost done with a separate update about Isla's recovery...it's coming soon)

On Monday, We learned that Isla's doctor, Dr. Robert Campbell, passed away over the weekend.
We are heartbroken for his family, the VEPTR community, and his team at CHOP.
Dr. Robert Campbell Obituary
I have been in and out of tears since we found out.
We feel deep sadness and also deep gratitude.
To have been able to meet this man and have him say YES to us, for care for Isla, was a huge gift.
His words to us, when we came to him desperate for hope for our sweet girl, brought such relief - "to not do anything for her is not an option, we need to try to do all we can"
We breathed a huge sigh a relief to hear his fight for our girl.
We have only known Dr. Campbell for around 6 months...but it feels like we lost a family member.
He was so kind to us - when we first met him and his team, we left CHOP saying we felt like we just met our family, we felt a sense of "home". We left with HOPE. God led us to a hero here on earth.

I cannot explain to you, as a parent, how it feels to hear from a team of doctors here in Seattle, that there is no hope for your child's life. That she has maybe a year or two left of life, and at least half of that would be her struggling. That they (Seattle doctors) will not touch her (attempt any surgery to help), that he (Seattle doctor) talked to all his colleagues around the world and no one will do anything because it would have to be very heroic, she is too severe.
We were broken...in so many ways. Many prayers were prayed...
Within two days of that horrible meeting with Seattle doctors, we made a call to CHOP because of reading about Dr. Campbell and his team online.
They worked with us immediately. We had all of Isla's records expedited to CHOP and within days, we heard that Dr. Campbell wanted to meet with us and that he was familiar with Isla's unique needs.
We flew to Philadelphia...
We went to these consultation appointments wondering who Dr. Campbell was...
He was so well known, has done countless surgeries, he has traveled around the world training doctors, he invented the VEPTR device (**read below for that story!), which has saved so many lives of children that were also told there was no hope.
We told him we felt like we were meeting a real super hero.
He was so kind, down to earth, incredibly brilliant, calm, and encouraging.
He made no promises, yet him saying he was going to do all he could for Isla, gave major HOPE. He did talk about how severe her needs are, yet talked with such peace that helped us feel at ease.
Another thing that really stood out to us was how he always brought up his family in conversation...telling us about his wife and kids. So special!

Dr. Campbell said YES..."to do nothing, is not an option"
May 2nd, 2018, Isla was able to have her first VEPTR placement surgery with Dr. Campbell.
We are forever grateful and do not take for granted that Isla was able to be a patient of his for this time.
He and his team were wonderful.
We praise God for the timing and leading in bringing us to CHOP and Isla starting out her VEPTR journey with this incredible doctor.
We have been so blessed to be a part of the VEPTR community through Facebook.
Please pray for all of these families... We are so blessed to be in this community and we feel for each of their stories...we are praying for all of you, dear friends!
A sweet fellow VEPTR mama and writer is blogging a series of posts that are stories from families, about Dr. Campbell, you can click here to follow and read these as she posts them
Dr. Campbell was "family" and a hero to so many wonderful people. Their stories are incredible and inspiring. This is a great loss felt by many, which is telling of Dr. Campbell's life and passion in his work.
We are so grateful for Dr. Campbell...He is a major part in Isla's story that we know God is not done writing.

Isla may not understand about Dr. Campbell right now, but we cannot wait to share about God bringing us to him and the work that he did for her. His determination for hope for her life!

artwork of Isla's 1st VEPTR surgery, by Dr. Campbell - yes, drawn on her bedsheet!

A true hero - describing the placement of Isla's VEPTR.

This plaque was outside the room we consulted with Dr. Campbell in at CHOP...
J O Y F U L in H O P E

We continue to look to the Lord for the future...knowing he is sovereign in all things.

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Have you ever wondered how he VEPTR came to be? Read on and learn about the genius of Dr. Campbell and Dr. Smith!

The Titanium Rib Project
Robert Campbell, MD

There comes a time in everybody’s life when they’re faced with a choice: either step up to the plate and take a swing against all odds—go for the home run—or play it safe. Maybe not even get off the bench.

Doctors, and especially orthopaedic surgeons, find themselves in this situation time and again. That doesn’t make it any easier, however, especially when a fragile child’s life is at stake. Should you take a risk, even though convention or standard practice excuses you from doing so?

And even more to the point, if you choose to go for it, how do you save such a life when the tool you need doesn’t even exist? When you’re Robert Campbell, MD, of Christus Santa Rosa Children’s Hospital in San Antonio, Texas, you invent it. In this case, the “it” is the world’s first vertical, expandable prosthetic rib.

In late September 1987, a six-month-old boy arrived at Christus Santa Rosa Children’s Hospital with seemingly irreversible defects—the most severe of which was a missing left chest wall.

Seven of the twelve ribs simply weren’t there, so there was no support for the lung and he was ventilator dependent. The child also had severe scoliosis. Doctors in Houston had tried to treat the chest wall defect with a splint, but had been unsuccessful. In Dr. Campbell’s words, “out of options, the child was sent home to die.”

Dr. Campbell was sitting in the hospital’s fifth floor operating room when Dr. Melvin Smith, a pediatric general surgeon in charge of the boy’s case, approached him with the patient’s x-rays, wondering if they could rig up a chest wall of some sort to save his life.

“I didn’t know it at the time, but I was about the third orthopod Dr. Smith had asked and the other two had said sorry, but there’s nothing to be done,” Dr. Campbell recalls with a slight smile. While that may be true, Dr. Smith remembers he was just trying to find assistance from “somebody who had as wild ideas as I did.”

Dr. Smith suggested using some plates or rods that could be screwed into place, but any screws used around the chest would work loose and perhaps go into the heart. They were going to have to come up with something new.

Dr. Campbell went home that night and, after a bit of doodling, settled on using fracture pins—metal pins used to stabilize and realign broken bones. The only problem was which way to run them. “If you put them sideways, you’re hooking them to the spine and to the sternum,” Dr. Campbell explains. “If it tears out in front, it’s going to go into the heart. Tears out in back, it’s going into the spinal cord. Both unacceptable…but if you did something that was fairly crazy but logical—put them vertically—then it would work.”

It was one thing to make some doodles but quite another to make those doodles real—inside a sick infant’s chest.
“When Dr. Smith made the skin incision, he was almost on lung. There was nothing there,” Dr. Campbell remembers. “I stuck the first Steinmann pin up there, got sterile vice grips, and started bending them around the ribs of this six-month-old infant. It was just terrible because I had to use tremendous force. One slip and I would have torn the axillary artery or damaged the spinal cord…my shoes were filling up with sweat.”

Altogether, Dr. Campbell fitted three pins between the existing ribs. When he was finished, Dr. Smith suggested they slip a silastic sheet under the pins, and by the end, they had created an artificial chest wall.

Even more extraordinary, post-op x-rays revealed that they had indirectly corrected the boy’s scoliosis without going anywhere near the spine. Four days later, he was off the ventilator for the first time since being born.
They had saved his life.

The euphoria, though, wore off within a few months. The pins wouldn’t grow as the boy matured, and therefore the makeshift device would end up harming the patient: the lung wouldn’t grow and the scoliosis would return. Dr. Campbell decided he had to develop a new device to replace the Steinmann pins. “I had no idea what we were going to do, but I just knew something had to be done. You know how necessity is the mother of invention? Well, necessity was the life or death of this child.”

Dr. Campbell decided to approach a large orthopaedic manufacturing company about making a device that could replace the fracture pins—something that would work more long term. After two months of negotiating with the first company he contacted, he hadn’t even gotten past the confidentiality agreement. “I realized I needed to search for a company that not only had the resources to do this, but also the heart,” explains Dr. Campbell.

The second company he approached, a smaller firm, contacted him about a month later saying they couldn’t do it but referred him to a custom prosthesis firm in California called Techmedica that had a good reputation for turning things around quickly. They scheduled a meeting for the fall of 1988—a year after the initial surgery. The patient was doing well, growing, putting on weight, but the long-term problem was evident. Some of the curvature was returning to his spine. He needed a new device for his chest—something that could be easily implanted and expanded periodically for growth.
While on vacation before the meeting, he sketched designs on his children’s construction paper, and after a few hours he had designed the world’s first expandable rib. When the date for his meeting with Techmedica approached, and putting a truncated engineering education to good use, he turned his sketches into an actual blueprint—something a manufacturing company could use. What he came up with was simple but ingenious. The rib would be made like a curtain rod but curved to give volume for the lung. When it needed to be expanded, it could be done with very small incisions during outpatient surgery.

In California, he met with the company’s engineers. “Then the CEO, Clyde Pratt, grabbed me and got me into his office and said, ‘I’ve been hearing a lot about this. I think we can do it, but it’ll be expensive—we mostly do total joint replacement. But let me get this straight. How many kids a year do you think are going to need this?’”

Dr. Campbell answered, “Maybe two or three.”
The CEO paused for a long while and finally said, “Well, we’re still going to do it.” All Dr. Campbell had to do was agree to hold a press conference afterward to help drum up a little publicity for the company.

For the next half year, Dr. Campbell and the engineers at Techmedica traded blueprints back and forth and eventually a prototype was made, but it was too weak when completely expanded. Dr. Campbell convinced them to try a new last-minute approach, but time was running short for the patient. He was still healthy, but his spine was getting worse and the operation needed to happen soon. Eventually, Drs. Campbell and Smith scheduled the surgery for April 19, 1989, therefore establishing a date for the titanium rib to be finished (they’d chosen titanium because it is lightweight, biocompatible and noninterfering with MRI scans).

The ribs arrived the night before surgery on an eight o’clock commercial flight; no time for anything except getting a good night’s sleep and taking the untested mechanical ribs to the hospital.

The surgery went remarkably well. The titanium ribs (or VEPTR, as they are now called, for Vertical Expandable Prosthetic Titanium Rib) worked as planned, although Dr. Campbell did have some troubles with the first rib: “I didn’t know much about working with titanium at the time. I was bending the loops with vice-grips. I bent them into place. Didn’t look right so I bent them back. Then I bent them again. It didn’t look right so I bent them again and they broke off. So, okay, don’t bend them a lot… I was real careful with number two.” A few hours later, the child was in the recovery room.
Within a month, the patient was doing well and he and Dr. Smith held a press conference to announce the ribs’ success—as promised to Techmedica. They got a lot of attention—too much! Soon, parents from all over the country were calling them to fix their childrens’ thoracic deformities.

Dr. Campbell and Dr. Smith formed the Titanium Rib Project and started to do more surgeries to help children with similar problems. They named the disease of these children “thoracic insufficiency syndrome.” Six new operations, made possible by the VEPTR, were developed.

Although not required, Dr. Campbell briefed the Institutional Review Board (IRB) at his hospital before each early surgery, but by the third, a nun on the IRB said she understood FDA rules on custom medical devices and she wondered how this new rib made by Techmedica was any different than the last one (as long as a prosthetic device is a custom design—meaning for a single, particular purpose, no FDA approval is needed). Dr. Campbell labored to explain that this was a different device because “it was longer” than the last one, but when the nun responded with a knowing look, he knew she had a point. Soon afterwards, he started the process for getting FDA approval, and 17 years after bending those first pins around the dying six-month old boy, the VEPTR, now manufactured by Synthes, received FDA approval in August 2004.

The VEPTR, a modern success story of not only pediatric orthopaedic engineering but also of caring determination, is currently used in 26 countries worldwide and has saved hundreds of lives. And that infant boy originally sent to San Antonio to die? He lived to be 20!

***article found on facebook through VEPTR families