I was three months pregnant with twins when my husband Ross and I went to my second sonogram.
I was 35 years old at the time, and I knew that that meant we had a higher risk of having a child with a birth defect. So, Ross and I researched the standard birth defects, and we felt reasonably prepared.
Well, nothing would have prepared us for the bizarre diagnosis that we were about to face. The doctor explained that one of our twins, Thomas, had a fatal birth defect called anencephaly. This means that his brain was not formed correctly because part of his skull was missing. Babies with this diagnosis typically die in utero or within a few minutes, hours or days of being born. But the other twin, Callum, appeared to be healthy, as far as the doctor could tell, and these twins were identical, genetically identical.
So after a lot of questions about how this could have possibly happened, a selective reduction was mentioned, and while this procedure was not impossible, it posed some unique risks for the healthy twin and for me, so we decided to carry the pregnancy to term. So there I was, three months pregnant, with two trimesters ahead of me, and I had to find a way to manage my blood pressure and my stress. And it felt like having a roommate point a loaded gun at you for six months. But I stared down the barrel of that gun for so long that I saw a light at the end of the tunnel. While there was nothing we could do to prevent the tragedy, I wanted to find a way for Thomas's brief life to have some kind of positive impact.
So I asked my nurse about organ, eye and tissue donation. She connected with our local organ-procurement organization, the Washington Regional Transplant Community. WRTC explained to me that Thomas would probably be too small at birth to donate for transplant, and I was shocked: I didn't even know you could be rejected for that. But they said that he would be a good candidate to donate for research. This helped me see Thomas in a new light. As opposed to just a victim of a disease, I started to see him as a possible key to unlock a medical mystery.
On March 23, 2010, the twins were born, and they were both born alive. And just like the doctor said, Thomas was missing the top part of his skull, but he could nurse, drink from a bottle, cuddle and grab our fingers like a normal baby, and he slept in our arms. After six days, Thomas died in Ross's arms surrounded by our family.
We called WRTC, who sent a van to our home and brought him to Children's National Medical Center. A few hours later, we got a call to say that the recovery was a success, and Thomas's donations would be going to four different places. His cord blood would go to Duke University. His liver would go to a cell-therapy company called Cytonet in Durham. His corneas would go to Schepens Eye Research Institute, which is part of Harvard Medical School, and his retinas would go to the University of Pennsylvania.
A few days later, we had a funeral with our immediate family, including baby Callum, and we basically closed this chapter in our lives. But I did find myself wondering, what's happening now? What are the researchers learning? And was it even worthwhile to donate?
WRTC invited Ross and I to a grief retreat, and we met about 15 other grieving families who had donated their loved one's organs for transplant. Some of them had even received letters from the people who received their loved one's organs, saying thank you. I learned that they could even meet each other if they'd both sign a waiver, almost like an open adoption. And I was so excited, I thought maybe I could write a letter or I could get a letter and learn about what happened. But I was disappointed to learn that this process only exists for people who donate for transplant. So I was jealous. I had transplant envy, I guess.
(Laughter)
But over the years that followed, I learned a lot more about donation, and I even got a job in the field.
And I came up with an idea. I wrote a letter that started out, "Dear Researcher." I explained who I was, and I asked if they could tell me why they requested infant retinas in March of 2010, and I asked if my family could visit their lab. I emailed it to the eye bank that arranged the donation, the Old Dominion Eye Foundation, and asked if they could send it to the right person. They said that they had never done this before, and they couldn't guarantee a response, but they wouldn't be an obstacle, and they would deliver it.
Two days later, I got a response from Dr. Arupa Ganguly of the University of Pennsylvania. She thanked me for the donation, and she explained that she is studying retinoblastoma, which is a deadly cancer of the retina that affects children under the age of five, and she said that yes, we were invited to visit her lab.
So next we talked on the phone, and one of the first things she said to me was that she couldn't possibly imagine how we felt, and that Thomas had given the ultimate sacrifice, and that she seemed to feel indebted to us. So I said, "Nothing against your study, but we didn't actually pick it. We donated to the system, and the system chose your study. I said, "And second of all, bad things happen to children every day, and if you didn't want these retinas, they would probably be buried in the ground right now. So to be able to participate in your study gives Thomas's life a new layer of meaning. So, never feel guilty about using this tissue."
Next, she explained to me how rare it was. She had placed a request for this tissue six years earlier with the National Disease Research Interchange. She got only one sample of tissue that fit her criteria, and it was Thomas's.
Next, we arranged a date for me to come visit the lab, and we chose March 23, 2015, which was the twins' fifth birthday. After we hung up, I emailed her some pictures of Thomas and Callum, and a few weeks later, we received this T-shirt in the mail.
A few months later, Ross, Callum and I piled in the car and we went for a road trip. We met Arupa and her staff, and Arupa said that when I told her not to feel guilty, that it was a relief, and that she hadn't seen it from our perspective. She also explained that Thomas had a secret code name. The same way Henrietta Lacks is called HeLa, Thomas was called RES 360. RES means research, and 360 means he was the 360th specimen over the course of about 10 years.
She also shared with us a unique document, and it was the shipping label that sent his retinas from DC to Philadelphia. This shipping label is like an heirloom to us now. It's the same way that a military medal or a wedding certificate might be.
Arupa also explained that she is using Thomas's retina and his RNA to try to inactivate the gene that causes tumor formation, and she even showed us some results that were based on RES 360. Then she took us to the freezer and she showed us the two samples that she still has that are still labeled RES 360. There's two little ones left. She said she saved it because she doesn't know when she might get more. After this, we went to the conference room and we relaxed and we had lunch together, and the lab staff presented Callum with a birthday gift. It was a child's lab kit. And they also offered him an internship.
(Laughter)
So in closing, I have two simple messages today. One is that most of us probably don't think about donating to research. I know I didn't. I think I'm a normal person. But I did it. It was a good experience, and I recommend it, and it brought my family a lot of peace. And second is if you work with human tissue and you wonder about the donor and about the family, write them a letter. Tell them you received it, tell them what you're working on, and invite them to visit your lab, because that visit may be even more gratifying for you than it is for them. And I'd also like to ask you a favor. If you're ever successful in arranging one of these visits, please tell me about it.
The other part of my family's story is that we ended up visiting all four facilities that received Thomas's donations. And we met amazing people doing inspiring work. The way I see it now is that Thomas got into Harvard, Duke and Penn --
(Laughter)
And he has a job at Cytonet, and he has colleagues and he has coworkers who are in the top of their fields. And they need him in order to do their job. And a life that once seemed brief and insignificant revealed itself to be vital, everlasting and relevant. And I only hope that my life can be as relevant.
Thank you.
(Applause)
