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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

Discovering a family’s rare gift
Ariel Zambelich

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.

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Was it something I did?
Was it something I did?
Getty Images

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.



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