The Multiple Miracles of One Short Life
As a mother tracks down the researchers who received her baby’s organ donations, her grief transforms into pride
As a mother tracks down the researchers who received her baby’s organ donations, her grief transforms into pride. SARAH GRAY FROM THE MOTH
I WAS THREE MONTHS pregnant with identical twin boys when my husband, Ross, and I learned that one of them had a fatal birth defect. Our son Thomas had anencephaly, which means that his skull and brain weren’t formed properly. Babies with this diagnosis typically die in utero, or within minutes, hours or days of being born.
This news was devastating and also confusing. I had never heard of anencephaly before, and it didn’t run in my family. I wondered if it was caused by something I ate, something I drank or something I did. But even if it was, why was one of my twins healthy?
I was wrestling with questions that would never have answers. It was like having an annoying hum running constantly in the background.
Six months later, the twins were born—both alive. Thomas lived for six days.
Callum was healthy, and Ross and I moved on the best that we could. We had a beautiful boy to raise.
WE HAVE A HANDFUL of pictures of Thomas in our home, and we decided early on to tell Callum the truth about his brother. It took a few years for our son to comprehend what we were trying to explain to him.
Sometimes he said things about his twin that were sad, and sometimes he said things that were kind of funny. Once, we told Callum that we were going to bring some flowers to put on Thomas’s grave. Callum picked up one of his little Matchbox cars and said, “I want to put this on the grave, too,” which I thought was really sweet.
Once we were at the cemetery, Callum asked, “Is Thomas scared under there?” I didn’t really know how to answer that, but I could pretend. So I answered, “No, he’s not scared.”
Later on, as we were on the couch watching cartoons, Callum asked, “Mommy, what is it like in heaven?”
Again, I don’t really know, but I did my best. I just said, “Some people think it’s a place you go when you die. Some people don’t believe it’s there.”
I was also curious about Thomas’s afterlife, but in a different way. Ross and I had decided to donate our child’s organs to science. While his death couldn’t be prevented, we thought at least it could be productive. We learned that because he would be too small at birth to qualify for transplants, he’d be a good candidate for research. And we were able to successfully donate his liver, his cord blood, his retinas and his corneas.
I wondered whether these parts of Thomas had made a difference. A few years after Thomas’s death, I was on a business trip in Boston, and I remembered that his corneas had gone to a division of Harvard Medical School called the Schepens Eye Research Institute. I looked it up and realized it was only a few kilometres from my hotel. I knew I wanted to visit the lab.
I’d given them a donation, but it wasn’t just a cheque or a bag of clothes—I’d given them the gift of my child.
In order to donate, however, I’d had to sign away my rights to any future information. So if they didn’t welcome me, I’d understand. Still, I felt in my heart that I should be allowed to visit, and that if I asked the right person, I might even be invited. But I also wondered if I would be emotionally ready if they rejected me. What would that do to my grief?
I called and explained to the receptionist, “I donated my son’s eyes to you. I’m in town on business for a few of days. Is there any chance I can stop by for a 10-minute tour?”
There was a pause. Then, lucky for me, the receptionist was very compassionate. She didn’t laugh or say it was weird (when it was, in fact, a little bit weird).
She said, “I’ve never had this kind of request before. I don’t know whom to transfer you to, but don’t hang up. I’m going to find somebody. Don’t hang up.”
In the end, she connected me to someone in donor relations. It wasn’t organ donor relations—it was financial donor relations. But that person knew how to give a tour, so we set up an appointment. I SHOWED UP THE next day, and my guide introduced me to one of the scientists who requested corneas, Dr. James Zieske, an associate professor of ophthalmology at Harvard Medical School. I stood in his doorway, and the guide explained who I was. Dr. Zieske, who was eating at his desk, stood up and thanked me for my donation.
He shook my hand and offered to answer any questions I might have.
Emotional, I asked, “How many corneas do you request in a year?”
He replied, “My lab requests about 10 a year. We would request more, but they are hard to get, and infant eyes are like gold to us.”
I could barely choke out the words. “Can you tell me why?”
He explained that infant eyes are unusual. Unlike adult eyes, they have the potential to regenerate longer in
the lab because the cells are younger and divide more easily.
“If you don’t mind my asking,” Zieske said, “how many years ago did your son die?”
I said, “About two years ago.”
“We are likely still studying your son’s eye cells,” he said, “and they are probably in this lab right now.”
When the tour concluded, my guide said to me, “I’ll never forget you. Please keep in touch.”
I felt something in me starting to change. My son had found his place in the world, and that place was this university. My son got into Harvard, and I’m now an Ivy League mom.
AFTER MY INITIAL TOUR, I thought maybe I could visit the three other places Thomas’s organs had gone to, as well. I made some phone calls and set up two appointments in Durham, N.C. This time I took Ross and Callum.
Our first visit was to Duke University, at the Center for Human Genetics, where the umbilical cord blood had gone. We met the director of the centre, who had also worked on the Human Genome Project.
He explained that being able to study the blood from each twin’s cord was extremely valuable to them. He was studying a field called epigenetics, which means “on top of genetics.” Epigenetic changes can help determine whether genes are turned on or off and are one of the reasons why identical twins can still be different. Our sons’ cord blood was able to help the researchers establish a benchmark to learn more about how anencephaly develops.
We then drove down to Cytonet, the biotech company that got Thomas’s liver. We met the president and eight
staff members and even the woman who’d held Thomas’s liver in her hands. They explained to us that his organ had been used in a six-liver study to determine the best temperature at which to freeze infant liver cells for a life-saving therapy.
A few years later, I set up the final appointment, in Philadelphia: Ross, Callum and I went to visit the University of Pennsylvania. That’s where we met the researcher who’d received Thomas’s retinas. She was studying a potentially deadly cancer of the retina called retinoblastoma. She explained that she’d been waiting six years for a sample like Thomas’s. It was so precious to her that she had saved some of it, and five years later, she still had some of it in her freezer. Did we want to see it?
Yes, we did.
She then gave Callum a Penn T-shirt and offered him an internship.
I HAD THOUGHT WHEN we made these donations that it was a nice thing to do. But I was blown away when I met the researchers and heard specifically how they were using each contribution. My grief began to turn into pride. It was as if Thomas was introducing us to his friends and colleagues. He was bringing me together with people I never would have met and taking me to places I never would have gone.
The humming I felt in the back of my mind finally stopped.
Recently, Ross, Callum and I went to Philadelphia to accept an award from the National Disease Research Interchange for advocacy. Callum got up and accepted the award onstage. He was so proud.
I took the opportunity to ask him, “Do you know why we are accepting this award?” And he said, “For helping people.” I know that as he grows older, he will have more questions for me, tough ones. And I’ll need to teach him that there are some times in life when those important questions won’t get an answer. But it’s worth trying, and you never know until you ask.
Thomas lived for six days. Years later, researchers still relied on his donated tissue.
Ross, Callum, one-year-old Jocelyn and the author, in their living room.