My Child Gave His Life to Science

By SARAH GRAY from THE MOTH

Reader's Digest - - Front Page - BY SARAH GRAY

Sarah and Cal­lum, at their home in Wash­ing­ton, DC

IWAS 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. 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?

First told at a show by the Moth, the live sto­ry­telling group, at the Tar­ry­town Music Hall in Tar­ry­town, New York

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. We have a few pic­tures of Thomas in our home. 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.

And once we were there, Cal­lum said, “Is Thomas scared un­der there?”

Of course I don’t re­ally know the an­swer to that, you know? But I could pre­tend, so I said, “No, he’s not scared.”

Later on, we were on the couch watch­ing car­toons, and Cal­lum said, “Mommy, what is it like in heaven?”

Again, I don’t re­ally know, so I did my best. I just said, “You know, some peo­ple think it’s a place you go when you die. Some peo­ple 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. A short time later, I was on a busi­ness trip in Bos­ton, and I re­mem­bered that Thomas’s corneas had gone to a di­vi­sion of Har­vard Med­i­cal School called the Schep­ens Eye Re­search In­sti­tute. So I looked, and I saw it was only a few miles from my ho­tel, and I thought, I would love to visit this lab and learn more about where Thomas’s do­na­tion went.

Be­cause I’d given them a do­na­tion, but it wasn’t just sign­ing a check or

We were able to do­nate his liver, cord blood, reti­nas, and corneas. I was cu­ri­ous about whether these do­na­tions made a dif­fer­ence.

giv­ing a bag of clothes—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, 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 was eat­ing a salad at his desk, and he stood up, and he thanked me for my do­na­tion.

He shook my hand and said, “Do you have any ques­tions for me?”

I was so emo­tional at meet­ing him. when it was a lit­tle

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 many years 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.”

So the tour con­cluded, and my guide said to me, “I’ll never for­get you. Please keep in touch with me.”

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 mom.

But I also got the bug, and I thought

“We would re­quest more corneas, but they are hard to get. In­fant eyes are like gold to us.”

maybe I could visit the three other places too. I made some phone calls, I set up two ap­point­ments in Durham, 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 cen­ter, who had also worked on the Hu­man Genome Project. 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 down the street to Cy­tonet, which is 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, in Philadel­phia, and Ross, Cal­lum, and I went to visit the Univer­sity of Penn­syl­va­nia. That’s where we met the re­searcher who’d 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 Penn T-shirt, and she of­fered him an in­tern­ship.

So 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 and his co­work­ers. He was in­tro­duc­ing me to peo­ple I never would have met and tak­ing me to places I never would have been.

The hum­ming that I felt in the back of my mind stopped.

Re­cently, Ross, Cal­lum, and I went to Philadel­phia to ac­cept an award from the Na­tional Dis­ease Re­search In­ter­change for ad­vo­cacy. We went on­stage, and Cal­lum ac­cepted the award. He was so proud. I took the op­por­tu­nity to ask him a ques­tion.

I asked, “Do you know why we are ac­cept­ing this award?”

And he said, “For help­ing peo­ple.” I know that as he grows older, there will be more ques­tions, tough ques­tions. And I’m go­ing to have to teach him that there are some times in life when there are ques­tions that are im­por­tant, but you’ll still never get the an­swer. But it’s worth the try, and you never know un­til you ask. Sarah Gray is the au­thor of A Life Ev­er­last­ing: The Ex­tra­or­di­nary Story of One Boy’s Gift to Med­i­cal Science.

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