A Life Everlasting (16 page)

“It had to be done,” Scotty said. He tried to think of something—anything—that might prove to the FDA what he knew to be true. In 2002 or 2003, he had tested the EZ-IO on two different deceased children—a girl and a toddler boy. But because both children had been embalmed, the fluid flow did not offer a realistic example of how the flow would proceed in real life, so his tests had limited usefulness.

“The adult world rapidly embraced the use of the drill, but they were worried about the pediatric uses. ‘It's too powerful—you will never be able to safely use this on a child,' and that kind of thing. They were scared,” Scotty explained.

It occurred to Bolleter that in order to show how the EZ-IO would really work in the real world, he would need to demonstrate the device on an unembalmed pediatric human cadaver.

“Infant donors are hard to get. It's not that the researchers do not want these donors. It's the lack of access. They are not available,” he said. Scotty placed a request for a deceased pediatric donor with the University of Texas Science Center in 2004.

Then he waited eight years.

In September 2012, Bolleter finally received a call asking if he would accept a neonatal donor from IIAM. By this time, not only was Bolleter still working on the EZ-IO, but he had an additional research project on airway management. He was trying to teach EMTs the differences between the airway of an adult and the airway of a child, and he figured that this donor might be able to help both studies.

Less than a week later, Amalya's body arrived via air freight at the Vidacare facility in Shavano, Texas. Bolleter and a member of his team opened the cardboard box labeled Human Remains. Inside was a casket covered with frozen gel packs. And inside the casket lay tiny Amalya.

“I wasn't shocked,” Scotty said. “He looked peaceful, like he was resting. It was unusual that he had a note written on his clothing, but it was welcome. The way I run my division, we are open to families and the discussion.

“The folks who work in human anatomy—we talk to specimens. We know all their names; we use their names. If we are pulling someone out of a cooler and their head falls hard on the table—well, my
staff apologizes immediately. It's not like slinging meat. We treated Amalya the same way we treat all of our specimens.”

Scotty Bolleter considers himself lucky to have been taught this way. Throughout his training in health care, his teachers and professional mentors all treated deceased donors with care and reverence. He described a funeral at medical school where solemn physicians and nurse practitioners gathered to honor their “first patients” and say a silent “thank you” for what they would not have learned otherwise.

Scotty Bolleter had waited eight years for this donor, and he didn't know when he might get this chance again. Bolleter's team took as many pictures and videos as they could, including among their subjects the newly designed EZ-IO device as it was placed into Amalya's femur and as it released fluid. Using fluorography—photography using fluorescence—Bolleter was able to successfully record and display the flow of fluid into Amalya's bone using the EZ-IO. Even then, he wondered if these images might be the evidence the FDA needed to understand that this device had the potential to save human lives.

During the procedure, Amalya's airway was also closely studied. Securing an airway quickly can be a matter of life and death in emergency medicine, and the airway of a child, especially the epiglottis, is different from that of an adult or a training dummy. Bolleter took pictures of Amalya's epiglottis and trachea to show other medical professionals exactly what it looks like to place a chest tube into such a tiny airway. These images would be incorporated into teaching tools and presentations that would be shared with thousands of professionals and students all over the world.

In the meantime, Bethany contacted IIAM to see if there were any updates from the researchers.

She got some surprising news.

“Never in a million years did I think I would get this,” Bethany said. Vidacare had provided a two-page handwritten note to IIAM to be delivered to Amalya's parents.

“Dear Mom & Dad,” it opened. The letter expressed condolences for their loss and gratefulness for their generosity. It explained that Amalya already had a complete set of X-rays and was part of a research and education effort that involved intraosseous vascular access. His contribution would undoubtedly save the lives of some of the world's smallest and sickest patients. It closed with a plea that the parents never underestimate the magnitude of their son's gift. At the bottom were seven individual signatures from members of the team, and handwritten messages reading “God Bless You” and “God Bless You and Yours.”

Bethany and Eric were floored. They read and reread the letter, and called her parents with the exciting news. The proud mom and dad created Christmas gifts for the researchers, which included a Christmas ornament and one of Amalya's handprints.

Nine months later, a rep from IIAM called the Conkels to let them know that the Vidacare research was done. Amalya's remains and his belongings would be returned to his family.

“Before the specimens go to be cremated, I write on their shroud the medical symbol for ‘with'—a
C
with a line on top—and a heart, for love,” said Scotty Bolleter.

In May 2013, the Conkels received a package at their Dayton home via Federal Express. Inside was a gold-colored box, about the size of a box that a bracelet might come in, affixed with a white label that read “This package contains the Cremated remains of Amalya Nathaniel Conkel.” Inside the box was cotton batting and a sealed plastic bag filled with ashes. Also included in the package was Amalya's onesie with the message written in highlighter, his blanket, his hat, and some gifts from Vidacare: a cloth angel figurine, a
knitted set of booties and a hat from an organization called Threads of Love, and a music CD.

Later that year, on October 30, 2013, Vidacare submitted the FDA approval application again, for the third time and with fingers crossed that these images would provide the evidence that was needed. Just over three months later, on February 11, 2014, the FDA published what is officially titled 510(k) NO: K132583 (TRADITIONAL). After seven years, three applications, and binders full of FDA questions and Vidacare responses, the FDA finally approved the use of the EZ-IO in the femur of children.

“The reviewer for the United States government specifically said, had it not been for those images, he likely would not have approved this particular usage,” said Scotty Bolleter. Through word of mouth, Bolleter already knows for sure of one child whose life was saved by this device and this location.

For the Conkels, hearing about all this was a dream come true. Through their donation, they were able to spare another family the loss that they faced. Amalya's death had not been in vain.

But that is not all Amalya Nathaniel Conkel accomplished. The images and videos of Amalya's airway have appeared before thousands of medical professionals in educational presentations and publications in countries all over the world, from New Zealand to Syria. Scotty Bolleter said that in the year 2015 alone, he personally presented Amalya's images to at least ten thousand medical professionals, including the attendees of the Special Operations Medical Association's annual conference, a gathering of professionals from the fields of wilderness, austere, and disaster medicine.

Scotty Bolleter and the Conkels were able to meet face to face in August 2014, at the Musculoskeletal Transplant Foundation's leadership summit in New Orleans, and they presented him with one of Amalya's handprints.

“Only once have I ever met a family before the Conkels, and you get a chance to say how they made a difference,” said Scotty. “Being able to complete that circle is critical; it allows you to move on the next important thing.”

“It was amazing to be able to meet him in person, and very fulfilling,” said Bethany.

For Bethany and Eric Conkel, donation brought healing. It gave Bethany what she called “Proud Mommy moments.”

“One of the hard parts about losing a baby at birth,” Bethany said, “is that you don't get to watch them grow up; you don't get to watch them reach their first milestones, take their first steps, say their first words, eat their first food. But donation allowed us to be proud of our son in a different way.”

On the third anniversary of receiving Amalya's diagnosis, Bethany did something special to honor her son. Moved by the FDA approval, Bethany got a tattoo. Just above her kneecap, where the newly approved insertion site is, she has a delicately drawn heart that comes to a point in an
A
—for Amalya.

And Bethany wasn't the only one recognizing Amalya.

“I have Amalya's handprint in my office, facing east,” said Scotty Bolleter. “So the sun rises in his little handprint. He is representative of all of the donors that have come before and will come after. When I look at little Amalya's hand, I think of all the donors who work here. It's not just a carcass. It's not just a body laying on a table.”

Scotty Bolleter is passionate about the contributions of these “voiceless teachers,” and frustrated by the shortage of deceased donors that are available for crucial, life-saving research.

“Think about the images that da Vinci drew—
The Mechanics of Man.
Those people are dead, but the images look like they were drawn yesterday. We still use those. Amalya's images will live on long after you and I are gone.

“There's a Latin phrase I learned in my training:
Mortui vivos docent.
It means ‘The dead will teach the living.' But that's not true. In emergency medicine, people die all the time, and we fail exactly the way we failed before. Because there is a shortage of donors worldwide, we don't learn how to do a thing differently,” Scotty said.

“It is one of the greatest wastes on the face of the earth.”

I
t had been nearly four years since Thomas's donation, and it was becoming clear there were more chapters yet to unfold.

In November 2013, Dr. Zieske from Schepens surprised us with an incredible gift: a copy of a study that may have been a result of Thomas's donated corneas. “Potential of Human Umbilical Cord Blood Mesenchymal Stem Cells to Heal Damaged Corneal Endothelium,” published in the journal
Molecular Vision
on March 2, 2012, was very likely based on Thomas's donation. We couldn't know for sure because of confidentiality issues, but it could be a written record of Thomas's contribution to the advancement of medical science. It contained beautiful images of what were possibly Thomas's eye cells.

And the study itself was even more interesting.

The cornea is the clear outer layer of the eyeball, sort of like the eye's windshield, and it looks like a transparent contact lens. Endothelial cells in the cornea do not regenerate, so if a cornea gets damaged, it stays damaged. Also, corneas naturally get worse as we get older. A newborn baby has all the corneal
cells the person will ever have, and we lose about 10 percent of them every decade. In addition to normal wear and tear, some genetic diseases lead to vision impairment. One in particular is Fuchs's endothelial dystrophy. According to the National Institutes of Health (NIH), Fuchs's is a disease of middle age, affecting approximately 4 percent of people over age forty, with women being affected more often than men. In its milder forms, patients don't necessarily notice a change; in advanced cases, patients experience vision loss.

For more than a century, corneal transplant has been the only option for those with a damaged cornea. One of the drawbacks to a corneal transplant is that there's a propensity for rejection, so patients often need to use immunosuppressive eyedrops for the rest of their lives.

Also, a corneal transplant involves getting stitches in your eye.

In the study published in
Molecular Vision
, researchers at Schepens described their attempts to find a way to make the cornea heal itself. They tried adding stem cells that were derived from donated umbilical-cord blood to the donated cornea—maybe Thomas's—and found that the corneal cells did show signs of being able to regrow.

The study was dense with scientific jargon, and it was difficult for me to really understand its importance. I wanted to know what the study really meant and to learn more about its context from someone not personally involved, so I contacted Dr. Albert Wu, an oculoplastic surgeon and corneal researcher at Mount Sinai School of Medicine.

Dr. Wu has a B.S. in molecular biophysics and biochemistry from Yale and an M.D. and a Ph.D. in molecular and cellular biology from the University of Washington. In addition, he's currently working on his own corneal research project involving stem cells.

“Is it possible that this study could take some people off the corneal transplant list?” I asked him.

“Absolutely,” Dr. Wu said. “This study is just the beginning. It shows that, potentially, mesenchymal cells can be used to heal damaged corneas so our patients no longer require transplant.” He went on to explain that in the United States every year, about forty thousand corneal transplants take place and that, worldwide, about six million people suffer from corneal blindness.

Thomas could have restored sight in up to two people if his corneas had gone for transplant. Instead, thanks to his contribution to this study, he was assisting a research effort that could potentially restore sight to millions of people. (As of the publication date of this book, this study has since been cited in seventeen more studies.)

Thomas was giving this proud mom more and more to brag about with every passing year. And he wasn't done yet.

In April 2014, WRTC invited me to speak about Thomas at a National Donate Life Month event at Children's National Medical Center in Washington, DC. This is the facility where Thomas's eye and liver recovery took place, so I was delighted to give a talk there.

When Thomas's body left our home for the first time without one of us, Ross and I wondered where he had gone. Four years later, I was finally able to ask WRTC to give me a behind-the-scenes tour of the most likely path Thomas's body took after he left our home. I wanted to see the operating room where the recovery happened, and I also wanted to meet any of the team who might have been working that day or who may have been involved in the work on Thomas.

After the event, I had the honor of meeting Dr. Mark Batshaw, executive vice president, chief academic officer and
physician-in-chief, and director of the research institute at Children's. But most fascinating to me was that, as one of the doctors who actually performs the infusion of hepatocytes on children, Dr. Batshaw was an end user of the Cytonet treatment. I excitedly explained that my son was a Cytonet donor, and told him about my visit.

Then it was time for the tour. This is where Thomas had been; it was hard to believe I was getting to fill in more of his story.

I was joined by an entire medical team, including an anesthesiologist and some transplant nurses. We began where ambulances drop off emergency patients, and then we headed up to the operating-room floor, where we changed into white gowns and put blue paper booties over our shoes.

The operating room that Thomas had been in, OR #1, was occupied, so we toured one next door. I couldn't resist asking a question.

“Were any of you working here that day—March 29, 2010?”

One nurse raised her hand. “I didn't work that morning, but I was an employee here at that time.”

“Has anyone here been in the room when a recovery happens?”

Everyone nodded and looked at the floor.

“What is it like to be in the room during a recovery?” I asked.

There was a pause. It was clearly a hard question to answer.

Eventually, one of the nurses said, “Emotionally, it's difficult. You spend all your energy thinking about saving these children's lives. When all the efforts fail, it gets to you.” Everyone nodded in recognition. “I remember that, the first time I saw a recovery, the hospital was really good about providing counseling, and making the chaplain available and everything. But
while you are doing it, you are just focusing on your job. I guess it's the adrenaline. Once the day was over and I got in my car, I just broke down.
That's
when I needed the counseling.”

Someone else said, “You feel so bad for the parents that it came to this. You wonder how they feel about it.”

I really wanted to give these wonderful people some succor.

“I was actually excited to be able to donate,” I said. “This was the one good thing that might come from my son's death. I was like, ‘Please, please, take everything you can.' I was sending good vibes to the whole team—like, ‘Please let this be successful. Do whatever you need to do.'”

Donating had lifted my burden, not made it heavier. I felt so lucky to be able to put faces to the team that had looked after Thomas, and was also glad they now had seen the face of a parent who had been blessed by their work. I hoped that seeing my gratitude for their work also gave them permission to do their job without feeling embarrassed or guilty. Being part of a recovery is an act of kindness for the donor's family as well as for the recipient. I wanted this team to hear that, unvarnished and straight from a parent's mouth.

The importance of this moment, and the emotion it brought out in me, overwhelmed me, and I suddenly felt very dizzy. I had to sit down and put my head between my legs.

Luckily, I was already surrounded by a team of medical professionals.

Eventually the blood started flowing again, and I asked Kimberly Woodard, Hospital Services and Professional Education specialist with WRTC, how eye recoveries are done. She told me that she performs them all over the state of Maryland, and that she often transports the tissue in her car: there's only a short window of time in which they can be processed, so she happily drives them to Medical Eye Bank of Maryland.

“So there are corneas sitting next to you in the passenger seat?” I asked.

“Yeah,” she said, like it was no big deal.

“Do you ever get a speeding ticket?” someone asked her.

“Well, we are not supposed to speed, but I admit I have gotten a ticket with eyes in the car. I still had to pay it,” Kimberly said, and everyone booed.

A few months later, as part of my job at AATB, I went to Baltimore to attend the annual meeting of the Association of Organ Procurement Organizations.

This annual meeting is the national conference for all fifty-eight OPOs from around the country, as well as other industry groups, and I was really excited because I would finally get to meet Bill Leinweber and Jeff Thomas of the National Disease Research Interchange. I wanted to tell them in person how much I appreciated NDRI's facilitating Thomas's cornea donation to Schepens.

Not willing to leave it to chance that I'd run into them, I made an appointment to sit down with them so I could tell them about Thomas and how important it had been to me that I was able to visit Dr. Zieske and learn about the amazing work the scientists were doing to restore sight to people with corneal blindness.

After I showed them pictures of Thomas and talked about tours I'd gotten, Jeff Thomas said, “Since I knew I'd be seeing you here, I pulled up Thomas's file to remind myself of where his gifts went.”

And then he dropped his bombshell.

“It looks like his retinas were also sent out for research.”

Surely if the retinas had also been placed, I would have heard about it before. I had visited the facility that processed his eyes, and they didn't mention anything. I thought,
Jeff must be thinking of some other donor
.

“No, I don't think so,” I said. “I just went to Old Dominion Eye Foundation last year and talked to Bill Proctor. He confirmed what WRTC had told me back in April 2010. Only his corneas were placed.”

“I'm pretty sure the retinas were, too,” Jeff said. He looked like he was sure of himself, and I was confused—and suddenly hopeful. What if another donation was out there somewhere?

“I'll look into it when I get back to the office,” Jeff said.

I wished his office had been open right then.

After a long day of sessions, at the evening reception I ran into some WRTC friends. As we mingled and politely sipped our pinot grigio, a distinguished man with white hair and glasses joined us.

“Sarah, do you know Dr. Carlos Fernandez?” someone said.

I had never met Dr. Fernandez but always hoped I might, because he was the medical director of WRTC, and the surgeon who recovered Thomas's liver.

We made small talk for a few minutes, and then I plucked up the courage to say what I wanted to say.

“I'm a donor mom. My son was an infant, with anencephaly.”

“I'm so sorry,” Dr. Fernandez said.

“I understand that you are the surgeon who did his liver recovery.”

“Oh, when was it?”

I explained the circumstances of the recovery—the hospital, the time of day, the size of the baby. He said he remembered it.

“The donation brought our family a lot of healing,” I said. “It was early in the morning. So thank you for getting up that early.”

Dr. Fernandez and I sat next to each other during dinner that night and continued our lovely conversation. Later on, we
had an epic time on the dance floor. As I said to one of his colleagues, “Don't let the gray hair fool you—this guy has moves!”

Shortly after the AOPO conference, I got news I'd long been waiting for. I could hardly believe it, but it was true: Jeff Thomas and Bill Proctor contacted me to tell me that yes, Thomas's retinas had indeed been donated to a research facility. There had been a paperwork mix-up, which is why ODEF had no record of the donation.

But NDRI did. The retinas . . . after all that.

I knew I had another trip to make. And I couldn't wait.