A Life Everlasting (14 page)

Subsequently the
Yale Pediatric Update
published a story about the “first pediatric liver-cell transplantation in the Northeast.” Dr. Sukru Emre, M.D., director of the Yale–New Haven Transplantation Center, performed the procedure on three-week-old Abbas Syed in 2010. Accompanying the article was a picture of Veena Chowdhan holding her laughing toddler.

Later, I would ask Dr. Emre about Abbas, and he would confirm that Abbas had been treated with donated hepatocytes from Cytonet. Abbas received hepatic cell infusions every day for six days. All the cells he received came from the liver of one
unidentified deceased donor. This donation played a vital role in saving Abbas's life. This was especially poignant given that Veena and her husband had previously lost a baby girl to the same condition. When she learned that there was a new treatment that had worked for at least one patient in Germany, she jumped at the chance. Nine months after Abbas received the liver-cell therapy, he received, in an eleven-hour operation, his full liver transplant. As of early 2016, Abbas was a thriving and healthy kindergartener.

Although Thomas would not have been directly involved in this treatment, I couldn't help but feel a connection to Abbas and his family from that moment on.

At the end of our afternoon at Cytonet, we reluctantly removed our visitor badges and got back in the car to begin the long drive home. I felt physically exhausted, but emotionally buoyed by the new answers, new friends, and further evidence of human compassion. In school, science had been one of my worst subjects. I thought it was too difficult to understand and boring, but I was starting to see things differently. No, science was definitely not boring. To paraphrase Neil deGrasse Tyson, I started appreciating science as being something close to magic, except it's better: it's real.

Cytonet was the only for-profit research organization to receive one of Thomas's donations, and I wondered how I would feel about that. This visit helped me make up my mind. First and foremost, Cytonet is the only organization that wanted Thomas's liver. If Cytonet didn't want it, it would have been buried in the ground. So my choice had not been between donating to a for-profit and a nonprofit company. It was between a for-profit and nothing. From that perspective, we made the right choice for us: a donation to a for-profit company was better than a liver in the ground.

Also, Cytonet is directly saving lives. And as a parent, I know what it feels like to be desperate for any kind of help. When your child is sick, it doesn't matter if a company is nonprofit or for-profit. All that matters is the answer to the question, Can you save my child? For many children, Cytonet hepatocytes are a life-saving treatment, and their only option. Each liver donated to Cytonet produces a variable number of cells. In some cases, one liver will make enough cell infusions for one patient. In others, one liver can help multiple patients. At the time of this writing, one donor has the potential to save up to six lives.

Dietmar Hopp started investing in Cytonet and other biotech companies because he saw a void in government funding that he could fill himself. This privately funded company might be making breakthroughs faster than a nonprofit organization could. They were also the only ones taking on the financial risk if the project failed.

I wondered how I might feel about Thomas's donations going to a for-profit company. As I learned more about it, I came to understand that nonprofits and for-profits both have their strengths and weaknesses, and I feel proud to be connected to
all
the places that received Thomas's donations.

At this point, the journey was over. I had broken through the taboos and the confidentiality and met the actual researchers who received Thomas's donations. In most cases I was the first donor family they had ever met.

People have asked me if I saw anything shady, or learned anything I wish I had not. I saw the opposite. I saw normal, hardworking, legitimate researchers going to work and doing research. It really is like it is on TV: the labs, the coats, the microscopes, the nerd jokes.

One of the biggest surprises to me was how immensely
admirable all of these projects are. These people are trying to cure cancer and other diseases. They don't act like it's a big deal, because they do it all day for years on end. But as an outsider, I was really impressed and honored to meet them and breathe the same air they did.

Thomas was their colleague. And now they could put a name to him. This meant everything.

I
had found great peace in completing my search for Thomas's donations. I knew he was contributing to the greater good. And Callum, now a toddler coming up on his third birthday, was thriving and a delight to have around. Everything was good. Ross and I started talking about having another baby.

But I was still processing everything that had happened. In the fall of 2012, I tried something new: I signed up for a storytelling class through an organization called Speakeasy DC. The class met one night a week, during which each of the ten students wrote and rehearsed telling a seven-minute story.

I decided to tell the story of touring Schepens. The final exam consisted of getting up onstage at a bar to tell our stories in public. I emailed invitations to the doctors and nurses at Inova Fairfax, where I'd had the babies, as well as everyone I'd met at Schepens. (I knew it was a long shot asking people from Boston to travel to DC, but they were the subjects of the story, and you never know.) In the end, Ross, Callum, my brothers Ethan and Mark—who recorded my performance on video—
and my friend Aimee came. It went pretty well, and I was proud of myself for being able to do it. Mark got a good recording, which I shared with the folks at WRTC so they could at least share my story with the team who worked so hard to make this donation happen.

So when I got a call in October 2012 from a journalist named Emily Berman from our local NPR station, WAMU, asking to interview me for a story about coping with the loss of a newborn, I was open to it. She had been referred to me by Kelly Gallo, the perinatal-concerns nurse who had worked with us. I had invited Kelly to the bar event. She hadn't been able to make it, but when Emily Berman asked her if she knew of any families who might be willing to speak with her for her story, Kelly gave her my name. On WAMU that day I told the story of the boys' birth and Thomas's anencephaly, as well as that first visit to meet Dr. Zieske and see Thomas at work at Schepens.

Then WRTC asked me to speak at a Donor Family Council meeting in December, and I jumped at the chance to tell other families how healing it had been to learn about my son's donation journey and meet all the people who were part of his life now.

In January I began the second-to-last course for my master's degree. This particular course was designed to coach students through the thesis project, and during the first week of class the professor handed out a worksheet and asked us to fill in information about our current job and career goals, with the idea that this exercise would help us focus on an appropriate thesis subject.

I was happy with my job at NISH, where I had started the AbilityOne Speakers Bureau. I had secured speaking opportunities for people who suffered from severe disabilities, whether they were born with them or acquired them as a result of disease
or traumatic injury. The most popular speakers were veterans of the wars in Iraq and Afghanistan, and we also worked with people with Down syndrome, learning disabilities, mental illness, or other serious challenges. For all of them, I helped craft narratives about their lives, what it was like to find employment, and how much it mattered to them and their families that they were able to live independently. The job was never boring, and I liked helping these amazing people. After ten years, I was good at my job, and I had no plans to leave, so that's what I wrote under “current job.”

But I also had to write something about my career goals, so, merely for something to say, I wrote: “Communications for an organ donation organization,” since so much of my life in recent months had been taken up with the subject.

My answer brought to mind an article I had read some months earlier in the
New York Times
about a nondirected kidney-donation chain that had saved the lives of thirty people. A nondirected donor is also called a “Good Samaritan”—a person who donates a kidney anonymously to a stranger, in the same way that you might donate blood to a stranger. This donation can trigger some kidney-paired donations, which occur when living donor A wants to donate to loved one B but their blood types are incompatible, and living donor C wants to donate to recipient D, but their blood types don't match, either. The pairs essentially swap kidneys, with donor A giving to recipient D, and donor C giving to recipient B. The more I thought about it, the more I loved the topic, so it was perfect for my thesis. And it would be a privilege to interview these people personally.

Thanks to my personal experience with donation, I knew exactly how to start: I called Lisa Colaianni at WRTC and asked if she could help connect me with some living donors. Lisa herself
had donated a kidney to a stranger, so she became my first interview subject. She then introduced me to seven more people, and they in turn introduced me to three more. Over the next three months, I interviewed ten people who had donated a kidney to a stranger. Many of them were involved in kidney chains, which means they helped to save the life of more than one person. One person I interviewed personally triggered a kidney chain that saved the lives of thirteen people.

As I completed my thesis research, I noticed a phenomenon: some of the donors reported feeling helpless because of the death of a loved one at some point before their kidney donation. There was nothing they could do to stop the illness and death of their family member or dear friend, but there was something they could do to save the life of a stranger. Donating a kidney to a stranger helped them even the odds with the universe and feel powerful again. I nicknamed it “retribution donation.” It was like saying to the universe, “You took my loved one for no reason, so I'm going to save this other person for no reason.”

It was an honor to talk to these donors. Thomas's death had made me understand how cruel life can be, and nondirected kidney donation is an example of how wonderful life can be.

During the semester, WRTC approached me a few more times to do more speaking engagements for them, including at a board of directors meeting. After one speech to the WRTC staff, a clinical-recovery coordinator, Elizabeth Turner, introduced herself; she had been in the room when Thomas's eyes were removed. It was emotional and delightful to meet her. I met other parents of donors, and saw how donation helped them cope with their loss. Although they didn't have the choice to save their loved ones, they felt empowered that they at least had the choice and power to help someone else—literally saving
the lives of strangers. And I had seen the healing power of meeting the unknown recipients. I heard that some recipients didn't want to meet their donor's family, and I was puzzled. What were they scared of?

I found myself requesting personal time off from my job at NISH to do these events at WRTC. I started to think,
If I'm taking time off from my job to work another job instead of relaxing or going on a vacation, maybe it's a sign that I should get that other job
.

As if by magic, a job opened up as a director of marketing and public affairs at the American Association of Tissue Banks. During a phone interview with Frank Wilton, the president and CEO of AATB, I found that I was excited just to be able to talk about the subject, and the more we talked, the more I realized it was perfect: I was already doing media and advocacy, and I knew all about donation.

And that's how I got my dream job before I'd even finished the course that had asked me to identify my dream job.

I was thirty-nine years old, and I'd thought I would stay in my old job forever, but here I was in a new job at AATB, and with a lot to learn.

For a start I had to familiarize myself with the world of tissue banking, which is complex. When Frank recommended I read a large spiral-bound book called
The Standards of Tissue Banking
, I thought to myself,
I was going to read it anyway
. Everything he gave me to read intrigued me; the job made me feel newly alive.

Medical advancements are constantly changing, as I learned those first few months trying to get up to speed.

There are more than a million tissue transplants in the United States every year, and many of them transform the patient's life. Patients who were not able to walk or work are able to maintain their independence once again after receiving
a transplant of just a few millimeters of ligament, or a bone chip, from a stranger.

Upon death, one person can donate up to eight organs: heart, lungs, kidneys, liver, pancreas, intestines; and, if you add in tissue—bones, corneas, skin, tendons, ligaments, cartilage, valves, nerves, veins—hundreds more recipients can benefit.

A donated heart valve can replace an adult's damaged valve or correct a baby's congenital defect.

A bone graft from a donor's femur can be reconfigured into a vertebra to correct a spinal deformity.

Bones, tendons, and ligaments lost or damaged by cancer, trauma, degenerative joint disease, or arthritis can all be replaced.

Burn survivors need donated skin, which is used as a dressing to prevent infection while their own skin heals.

Professional athletes who get ulnar collateral ligament (UCL) reconstruction, or Tommy John surgery, are sometimes the recipients of donor tissue, often referred to as an “allograft.”

But tissue banking is not only about the donations of someone who has died. Living donors can donate reproductive tissue such as sperm and oocytes (eggs). Mothers who have delivered a baby can donate the afterbirth, which includes the umbilical cord, placenta, and amnion. This is referred to as “birth tissue,” and it can be processed into skin grafts for burn survivors. At the time of this writing, depending on the size, one placenta can be processed into healing skin grafts for up to four different people.

One thing I noticed—and didn't like at all—was how often the term
cadaver
is used instead of
donor
. I never, ever, think of my son as a “cadaver,” and I cringe at the thought that someone else might. I learned that I am not the only donor mom to be offended by this usage. The National Kidney Foundation's Donor Family Council started the effort to eliminate the words
harvest
and
cadaver
from the transplant lexicon in the 1990s. Major newspapers and medical journals, such as the
American Journal of Transplantation
, have since adopted less offensive language, too. One of the first things I worked on at AATB was a document for the media called “Communicating with Care and Respect.”The AATB is one of many organizations that encourage the use of the term
deceased donor
as opposed to
cadaver
.

A part of my job would entail working with Donate Life America, a nonprofit alliance of organizations around the country dedicated to promoting organ, eye, and tissue donation. Donate Life America essentially serves as the marketing arm of the United Network for Organ Sharing, or UNOS. UNOS, which is referred to as “the computer in the sky,” contains the algorithm that assigns available organs—and now vascularized composite grafts (including limbs and, now, faces)—to patients who need one.

Before UNOS was founded, individual hospitals and local organ-procurement organizations handled organ recoveries and transplants. But if an organ could not be used locally, there was no way to find a recipient elsewhere in a timely manner, and much-needed organs went unused while patients in need languished or died. In 1977, the first computerized database was started, and as more and more hospitals started doing transplants, Congress passed the National Organ Transplant Act in 1984 to create a national network, and thus UNOS was born.

In 1992, UNOS was instrumental in setting up the Coalition on Donation, now known as Donate Life America, as an independent nonprofit to encourage donor registration. Nearly thirty thousand organ transplants were done in 2014, but more than 100,000 people needed one. There are currently more than 120,000 people on the waiting list for an organ transplant in the United States, including more than 2,000 children. Every
ten minutes another name is added to the list, and more than twenty people die every day waiting.

A couple of months after I started work at AATB, the CEO, Frank Wilton, thought it would be a good idea to introduce me to the people at Donate Life America in person, so we planned a trip to Richmond, Virginia, where DLA is based, a few blocks from the UNOS offices, where we would also pay a visit.

Before we left, I said to Frank, “This isn't officially related to AATB business, but could we swing by Old Dominion Eye Foundation? That's where my son's eyes went.” Frank agreed, and I set up a meeting with Christina Jenkins, the associate director and director of public relations.

Helen Keller herself inspired the formation of Old Dominion Eye Foundation when she spoke at a Lions Club event and founder Melvin Jones was in the audience.

Melvin Jones was a businessman living in Chicago who had been elected to a leadership position with the Business Circle, a group of businessmen who had lunch together and helped advance one another's financial interests. Jones felt that these meetings were a misuse of influence, talent, and ambition, so he used his leadership position to change the direction of the group, inviting the members to help improve their communities instead. Jones famously said, “You can't get very far until you start doing something for somebody else.” In 1917, tired of the Business Circle's meager aims, Melvin Jones helped establish the Lions Club, the charitable organization that now has chapters around the world and nearly half a million members.

By the mid-1920s, activist, speaker, and author—as well as suffragette and unapologetic Socialist—Helen Keller had already both established the Helen Keller International organization and helped found the ACLU. Keller had gone blind and deaf at age nineteen months after a severe illness. The first deaf
and blind person to get a degree, she toured extensively, advocating for people with disabilities. One of her stops was at the 1925 International Convention of Lions Clubs in Cedar Point, Ohio, where she asked the Lions Clubs to focus their efforts and take on the cause of helping people who are blind.