The Mul­ti­ple Mir­a­cles of One Short Life

As a mother tracks down the re­searchers who re­ceived her baby’s or­gan do­na­tions, her grief trans­forms into pride

Reader's Digest (Canada) - - Contents - BY SARAH GRAY FROM THE MOTH

As a mother tracks down the re­searchers who re­ceived her baby’s or­gan do­na­tions, her grief trans­forms into pride. SARAH GRAY FROM THE MOTH

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 weren’t 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 anen­cephaly be­fore, and it didn’t run in my fam­ily. I won­dered if it was caused by some­thing I ate, some­thing I drank or some­thing I did. But even if it was, why was one of my twins healthy?

I was wrestling with ques­tions that would never have an­swers. It was like hav­ing an an­noy­ing hum run­ning con­stantly in the back­ground.

Six months later, the twins were born—both alive. Thomas lived for six days.

Cal­lum was healthy, and Ross and I moved on the best that we could. We had a beau­ti­ful boy to raise.

WE HAVE A HAND­FUL of pic­tures of Thomas in our home, and we de­cided early on to tell Cal­lum the truth about his brother. It took a few years for our son to com­pre­hend what we were try­ing to ex­plain to him.

Some­times he said things about his twin that were sad, and some­times he said things that were kind of funny. Once, 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.

Once we were at the ceme­tery, Cal­lum asked, “Is Thomas scared un­der there?” I didn’t re­ally know how to an­swer that, but I could pre­tend. So I an­swered, “No, he’s not scared.”

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

Again, I don’t re­ally know, but I did my best. I just said, “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 dif­fer­ent way. Ross and I had de­cided to do­nate our child’s or­gans to sci­ence. While his death couldn’t be pre­vented, we thought at least it could be pro­duc­tive. We learned that be­cause he would be too small at birth to qual­ify for trans­plants, he’d be a good can­di­date for re­search. And we were able to suc­cess­fully do­nate his liver, his cord blood, his reti­nas and his corneas.

I won­dered whether these parts of Thomas had made a dif­fer­ence. A few years af­ter Thomas’s death, I was on a busi­ness trip in Bos­ton, and I re­mem­bered that his corneas had gone to a di­vi­sion of Har­vard Med­i­cal School called the Schep­ens Eye Re­search In­sti­tute. I looked it up and re­al­ized it was only a few kilo­me­tres from my ho­tel. I knew I wanted to visit the lab.

I’d given them a do­na­tion, but it wasn’t just a cheque or a bag of clothes—I’d given them the gift of my child.

In or­der to do­nate, how­ever, I’d had to sign away my rights to any fu­ture in­for­ma­tion. So if they didn’t wel­come me, I’d un­der­stand. Still, I felt in my heart that I should be al­lowed to visit, and that if I asked the right per­son, I might even be in­vited. But I also won­dered if I would be emo­tion­ally ready if they re­jected me. What would that do to my grief?

I called and ex­plained to the re­cep­tion­ist, “I do­nated my son’s eyes to you. I’m in town on busi­ness for a few of days. Is there any chance I can stop by for a 10-minute tour?”

There was a pause. Then, lucky for me, the re­cep­tion­ist was very com­pas­sion­ate. She didn’t laugh or say it was weird (when it was, in fact, a lit­tle bit weird).

She said, “I’ve never had this kind of re­quest be­fore. I don’t know whom to trans­fer you to, but don’t hang up. I’m go­ing to find some­body. Don’t hang up.”

In the end, she con­nected me to some­one in donor re­la­tions. It wasn’t or­gan donor re­la­tions—it was fi­nan­cial donor re­la­tions. But that per­son knew how to give a tour, so we set up an ap­point­ment. I SHOWED UP THE next day, and my guide in­tro­duced me to one of the sci­en­tists who re­quested corneas, Dr. James Zieske, an as­so­ciate pro­fes­sor of oph­thal­mol­ogy at Har­vard Med­i­cal School. I stood in his door­way, and the guide ex­plained who I was. Dr. Zieske, who was eat­ing at his desk, stood up and thanked me for my do­na­tion.

He shook my hand and of­fered to an­swer any ques­tions I might have.

Emo­tional, I asked, “How many corneas do you re­quest in a year?”

He replied, “My lab re­quests about 10 a year. We would re­quest more, but they are hard to get, and in­fant eyes are like gold to us.”

I could barely choke out the words. “Can you tell me why?”

He ex­plained that in­fant eyes are un­usual. Un­like adult eyes, they have the po­ten­tial to re­gen­er­ate longer in

the lab be­cause the cells are younger and di­vide more eas­ily.

“If you don’t mind my ask­ing,” Zieske said, “how many years ago did your son die?”

I said, “About two years ago.”

“We are likely still study­ing your son’s eye cells,” he said, “and they are prob­a­bly in this lab right now.”

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

I felt some­thing in me start­ing to change. My son had found his place in the world, and that place was this univer­sity. My son got into Har­vard, and I’m now an Ivy League mom.

AF­TER MY INI­TIAL TOUR, I thought maybe I could visit the three other places Thomas’s or­gans had gone to, as well. I made some phone calls and set up two ap­point­ments in Durham, N.C. This time I took Ross and Cal­lum.

Our first visit was to Duke Univer­sity, at the Cen­ter for Hu­man Ge­net­ics, where the um­bil­i­cal cord blood had gone. We met the di­rec­tor of the cen­tre, who had also worked on the Hu­man Genome Project.

He ex­plained that be­ing able to study the blood from each twin’s 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 are one of the rea­sons why iden­ti­cal twins can still be dif­fer­ent. Our sons’ cord blood was able to help the re­searchers es­tab­lish a bench­mark to learn more about how anen­cephaly de­vel­ops.

We then drove down to Cy­tonet, the biotech com­pany 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 or­gan had been used in a six-liver study to de­ter­mine the best tem­per­a­ture at which to freeze in­fant liver cells for a life-sav­ing ther­apy.

A few years later, I set up the fi­nal ap­point­ment, in Philadel­phia: 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 a po­ten­tially deadly can­cer of the retina called retinoblas­toma. She ex­plained that she’d 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. Did we want to see it?

Yes, we did.

She then gave Cal­lum a Penn T-shirt and of­fered him an in­tern­ship.

I HAD THOUGHT WHEN we made these do­na­tions that it was a nice thing to do. But I was blown away when I met the re­searchers and heard specif­i­cally how they were us­ing each con­tri­bu­tion. My grief be­gan to turn into pride. It was as if Thomas was in­tro­duc­ing us to his friends and col­leagues. He was bring­ing me to­gether with peo­ple I never would have met and tak­ing me to places I never would have gone.

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

Re­cently, Ross, Cal­lum and I went to Philadel­phia to ac­cept an award from the Na­tional Dis­ease Re­search In­ter­change for ad­vo­cacy. Cal­lum got up and ac­cepted the award on­stage. He was so proud.

I took the op­por­tu­nity to ask him, “Do you know why we are ac­cept­ing this award?” And he said, “For help­ing peo­ple.” I know that as he grows older, he will have more ques­tions for me, tough ones. And I’ll need to teach him that there are some times in life when those im­por­tant ques­tions won’t get an an­swer. But it’s worth try­ing, and you never know un­til you ask.

Thomas lived for six days. Years later, re­searchers still re­lied on his do­nated tis­sue.

Ross, Cal­lum, one-year-old Jo­ce­lyn and the au­thor, in their liv­ing room.

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