DISCOVERING A FAMILY’S RARE GIFT
When one of her identical twins died shortly after birth, a brave mother donated his tissue to science. Then she followed it wherever it went
A mother’s quest to find meaning after donating her son’s organs.
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 were not formed properly. Babies with this diagnosis typically die in utero or within minutes, hours or days of being born.
We were able to donate his liver, cord blood, retinas and corneas. I was curious about whether these donations made a difference
This news was devastating, and also confusing. I had never heard of this before, and it didn’t run in my family. I wondered, Was it something I ate, was it something I drank, was it something I did? But then, even if it was, why was one of them healthy?
So I was wrestling with a lot of questions that would never have answers. And I had to make peace with that. It was like having an annoying hum in the background.
Six months later, the twins were born, and they were both born alive. Thomas lived for six days. Callum was healthy, and Ross and I moved on the best that we could. We had a beautiful, healthy boy to raise.
We decided early on to tell Callum the truth about his brother. It was a few years later that Callum started to comprehend what we were trying to tell him.
Sometimes he said things that were sad, and sometimes he said things that were kind of funny. We visit Thomas’s grave a couple of times a year, and one time 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.
Later on, we were on the couch watching cartoons, and Callum said, “Mummy, what is it like in heaven?”
I don’t really know, so I did my best. “You know, some people think it’s a place you go when you die. Others don’t believe it’s there.”
I was also curious about Thomas’s afterlife, but in a totally different way. Ross and I had decided to donate Thomas’s organs to science. While his death was inevitable, we thought maybe it could be productive. We learned that because he would be too small at birth to qualify for transplant, he’d be a good candidate to donate for research. We were able to donate his liver, his cord blood, his retinas and his corneas.
I was curious about whether these donations made a difference. Later, while on a business trip in Boston, I remembered that Thomas’s corneas had gone to a division of Harvard Medical School called the Schepens Eye Research Institute. So I looked it up and saw it was only a few kilometres from my hotel, and I thought, I would love to visit this lab and learn more about where Thomas’s donation went.
I’d given them a donation, but it wasn’t just signing a cheque – I had given them the gift of my child.
However, in order to donate, I had to sign away my rights to any future information about the donation.
So if they did not welcome me, I would understand. Although I felt in my heart that I wanted to visit, that I should be allowed to visit, and that if I asked the right person, I might even be invited for a visit. But I also wondered, if they reject me, am I emotionally ready for that? What’s that going to do to my grief?
But I called. I explained to the receptionist, “I donated my son’s eyes to you a couple of years ago. I’m in town on business for a couple of days. Is there any chance I can stop by for a ten-minute tour?”
There was a pause. And lucky for me, the receptionist was very compassionate. She didn’t laugh or say it was weird, when it was a little weird.
She said, “I’ve never had this request before. I don’t know who to transfer you to, but don’t hang up. I’m going to find somebody for you. Don’t hang up.”
So she connected me to someone in donor relations. It was not organ donor relations. It was financial donor relations, but she knew how to give a tour. So we set an appointment.
I showed up the next day, and she introduced me to one of the people who requested corneas, Dr James Zieske, an associate professor of ophthalmology at Harvard Medical School. I stood in his doorway, and the donor relations woman explained who I was. Dr Zieske stood up and he thanked me for my donation.
I was blown away when the researchers told me what they were doing with each donation
He shook my hand and said, “Do you have any questions for me?”
I was so emotional at meeting him. I said, “How many corneas do you request in a year?”
He said, “My lab requests about ten a year. We would request more, but they are hard to get, and infant eyes are like gold to us.”
My heart was just in my throat. I could barely choke out the words. I said, “Could you tell me why?” He said that infant eyes are unusual because most of us are older when we die, and that’s when you donate your eyes. But unlike adult eyes, infant eyes have the potential to regenerate longer in the lab because the cells are younger and divide more easily.
He said, “If you don’t mind my asking, how long ago did your son die?”
I said, “About two years ago.”
He said, “We are likely still studying your son’s eye cells, and they are probably in this lab right now.”
When the tour concluded, my guide said, “I’ll never forget you.”
I felt something in me starting to change. I felt that my son had found his place in the world, and that place was Harvard.
So my son got into Harvard, and I’m now an Ivy League mum. But I also got the bug, and I thought maybe I could visit the three other places, too. I made some phone calls, I set up two appointments in North Carolina, and this time I took my husband and our son.
Our next visit was to Duke University, at the Center for Human Genetics, where the cord blood had gone. We met the director of the centre. He explained that being able to study the blood from each twin’s umbilical 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 it’s one of the reasons that identical twins can still be different. Our twins’ cord blood was able to help the researchers establish a benchmark to learn more about how anencephaly develops.
We then drove to the place 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 liver had been used in a six-liver study to determine the best temperature at which to freeze infant liver cells for a lifesaving therapy. They also said we were the only donor family who had ever visited.
A few years later, I set up the final appointment, and Ross, Callum and I went to visit the University of Pennsylvania. That’s where we met the researcher who had received Thomas’s retinas. She was studying retinoblastoma, which is a potentially deadly cancer of the retina. She explained that she had 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, and did we want to see it? Yes, we did.
She then gave Callum a University of Pennsylvania T‑shirt and offered him an internship.
I had thought when we made these donations – in the abstract, in the generic sense – that it was a nice thing to do. But I was amazed and blown away when I met the researchers and they told me specifically what they were doing with each donation. My feeling of grief started to turn into pride. I felt that Thomas was introducing us to his colleagues.
Recently, we accepted an award from the National Disease Research Interchange for advocacy. Callum accepted the award on stage. He was so proud. I took the opportunit y to ask him, “Do you know why we are accepting this award?” He replied, “For helping people.” I know as he grows older there will be more tough questions. And I’m going to have to teach him that sometimes in life you don’t always get the answer to important questions. But it’s worth trying.
Thomas lived for six days. Years later, doctors still relied on his donated tissue
Ross, Callum, one-year-old Jocelyn and the author, in their living room