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.
Was it something I did?
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.
Making a difference
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.