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In 2009, Sarah Gray was 35 years old and 8 weeks pregnant when she found out she'd be having twins. She and her husband were happily surprised at their ultrasound. They'd always wanted two kids. This way, Sarah recalls, she'd "only have to do this whole pregnancy thing one time." It was four more weeks before they knew one of the twins wasn't going to make it.
Thomas, one of Sarah's twins, was diagnosed with anencephaly, a severed neural tube defect. Anencephaly means 'without a brain'. Thomas' skull didn't close properly in the early stages of development, and due to that, amniotic fluid was getting inside the skull and disintegrating the brain. It was a birth defect Sarah, and her husband Ross hadn't even known to worry about.
"You've gotta be kidding me," Sarah remembers thinking. "I've done everything right. I don't smoke. I wasn't drinking. It's like, I eat healthy. I took folic acid vitamins." She asked about doing a selective termination, but it was ruled out because the twins were identical. The death of one could impact the other's development and risk losing both twins. The Grays ruled that out.
As the months went by, Sarah shopped for one set of clothes, one car seat and one stroller. All the while, she was picking out a coffin, and researching organ donation. It wasn't clear if anyone would want Thomas' organs, given he would be so small.
Sarah's mom found one article online, about a family in Alexandria whose baby had anencephaly. That family had donated the baby's liver cells for scientific research. So, Sarah took that article to her doctor, who confirmed that Sarah could, in fact, donate Thomas' organs -- probably not for transplant, but definitely to scientific research.
When the babies were born, Ross and Sarah expected Thomas to die within minutes. But, he didn't. "I remember holding him," Ross recalls, "and he seemed like such a friendly little guy. He just wanted to be cuddled. There's not really too much else you can do." Thomas lived for 5 days, and died at home, cradled in his parents' arms.
Almost immediately Sarah called the Washington Regional Transplant Community, which had organized Thomas' organ donation. They sent a van to pick him up and take him to the hospital right away to get his organs.
In grief counseling, Sarah and Ross met people going through similar experiences. Some spoke about how they had saved lives by donating their loved ones' organs. Thomas' organs weren't big enough for transplant, and had gone to scientific research. Sarah began to wonder where Thomas' donations went, and whether they were put to use. She found out of one the donations, his eyes, went to the Schepens Eye Research Institute at Harvard.
"It didn't even occur to me I could go there until I went to Boston for a work conference," Sarah says. She called the front desk of Harvard's eye institute, and asked if she could have a tour of the building. They said yes, and the next morning, she arrived early to take pictures of the outside of the building. She put a few brochures in her purse and waited for her tour guide, Carolyn.
Carolyn showed her the labs, and then she introduced Sarah to Dr. James Zieske, a professor at Harvard Medical School. Dr. Zieske. He looked shocked. The lab, Carolyn said, had never had a donor come visit before.
"I felt emotional meeting him [Zieske]," Sarah says. "And I got the feeling like he was emotional too. Like, you care enough about what I'm doing to come here."
Dr. Ziskie thanked her for her donation and asked her if there was anything she wanted to know.
"How many eyes do you order in a year'?" she asked. He said his group orders 10, and that infant eyes are the most rare. "He said that infants eyes are like gold to them," because they can regenerate for years.
Looking back, Sarah says meeting Dr. Zieske and the rest of the researches gave her a sense of relief.
"A feeling of... my son is OK," she says. "It almost felt like visiting our son at college."
On her way out of town, Sarah bought a toddler size Harvard T-shirt for Callum, and felt, for a first time in quite a while, an immense sense of peace.
[Music: "Under the Bridge" by The Stanley Clark Trio from Jazz in the Garden]
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