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

Reader's Digest Asia Pacific - - Contents - SARAH GRAY

A mother’s quest to find mean­ing af­ter do­nat­ing her son’s or­gans.

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.

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

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.

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.

I was blown away when the re­searchers told me what they were do­ing with each do­na­tion

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

I was so emo­tional at meet­ing him. 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 long 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.”

When the tour con­cluded, my guide said, “I’ll never for­get you.”

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 mum. But I also got the bug, and I thought maybe I could visit the three other places, too. I made some phone calls, I set up two ap­point­ments in 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 cen­tre. 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 to 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, and Ross, Cal­lum and I went to visit the Univer­sity of Pennsylvania. That’s where we met the re­searcher who had 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 Univer­sity of Pennsylvania T‑shirt and of­fered him an in­tern­ship.

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.

Re­cently, we ac­cepted an award from the Na­tional Dis­ease Re­search In­ter­change for ad­vo­cacy. Cal­lum ac­cepted the award on stage. He was so proud. I took the op­por­tu­nit y to ask him, “Do you know why we are ac­cept­ing this award?” He replied, “For help­ing peo­ple.” I know as he grows older there will be more tough ques­tions. And I’m go­ing to have to teach him that some­times in life you don’t al­ways get the an­swer to im­por­tant ques­tions. But it’s worth try­ing.

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

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

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