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  • I was three months pregnant with twins

  • when my husband Ross and I went to my second sonogram.

  • I was 35 years old at the time,

  • and I knew that that meant we had a higher risk

  • of having a child with a birth defect.

  • So, Ross and I researched the standard birth defects,

  • and we felt reasonably prepared.

  • Well, nothing would have prepared us

  • for the bizarre diagnosis that we were about to face.

  • The doctor explained that one of our twins, Thomas,

  • had a fatal birth defect called anencephaly.

  • This means that his brain was not formed correctly

  • because part of his skull was missing.

  • Babies with this diagnosis typically die in utero

  • or within a few minutes, hours or days of being born.

  • But the other twin, Callum,

  • appeared to be healthy, as far as the doctor could tell,

  • and these twins were identical,

  • genetically identical.

  • So after a lot of questions about how this could have possibly happened,

  • a selective reduction was mentioned,

  • and while this procedure was not impossible,

  • it posed some unique risks for the healthy twin and for me,

  • so we decided to carry the pregnancy to term.

  • So there I was, three months pregnant, with two trimesters ahead of me,

  • and I had to find a way to manage my blood pressure and my stress.

  • And it felt like having a roommate point a loaded gun at you for six months.

  • But I stared down the barrel of that gun for so long

  • that I saw a light at the end of the tunnel.

  • While there was nothing we could do to prevent the tragedy,

  • I wanted to find a way for Thomas's brief life

  • to have some kind of positive impact.

  • So I asked my nurse about organ, eye and tissue donation.

  • She connected with our local organ-procurement organization,

  • the Washington Regional Transplant Community.

  • WRTC explained to me

  • that Thomas would probably be too small at birth to donate for transplant,

  • and I was shocked:

  • I didn't even know you could be rejected for that.

  • But they said that he would be a good candidate to donate for research.

  • This helped me see Thomas in a new light.

  • As opposed to just a victim of a disease,

  • I started to see him as a possible key to unlock a medical mystery.

  • On March 23, 2010,

  • the twins were born, and they were both born alive.

  • And just like the doctor said,

  • Thomas was missing the top part of his skull,

  • but he could nurse,

  • drink from a bottle,

  • cuddle and grab our fingers like a normal baby,

  • and he slept in our arms.

  • After six days, Thomas died in Ross's arms

  • surrounded by our family.

  • We called WRTC, who sent a van to our home

  • and brought him to Children's National Medical Center.

  • A few hours later, we got a call to say that the recovery was a success,

  • and Thomas's donations would be going to four different places.

  • His cord blood would go to Duke University.

  • His liver would go to a cell-therapy company called Cytonet in Durham.

  • His corneas would go to Schepens Eye Research Institute,

  • which is part of Harvard Medical School,

  • and his retinas would go to the University of Pennsylvania.

  • A few days later, we had a funeral with our immediate family,

  • including baby Callum,

  • and we basically closed this chapter in our lives.

  • But I did find myself wondering, what's happening now?

  • What are the researchers learning?

  • And was it even worthwhile to donate?

  • WRTC invited Ross and I to a grief retreat,

  • and we met about 15 other grieving families

  • who had donated their loved one's organs for transplant.

  • Some of them had even received letters

  • from the people who received their loved one's organs,

  • saying thank you.

  • I learned that they could even meet each other

  • if they'd both sign a waiver,

  • almost like an open adoption.

  • And I was so excited, I thought maybe I could write a letter

  • or I could get a letter and learn about what happened.

  • But I was disappointed to learn

  • that this process only exists for people who donate for transplant.

  • So I was jealous. I had transplant envy, I guess.

  • (Laughter)

  • But over the years that followed,

  • I learned a lot more about donation,

  • and I even got a job in the field.

  • And I came up with an idea.

  • I wrote a letter that started out,

  • "Dear Researcher."

  • I explained who I was,

  • and I asked if they could tell me why they requested infant retinas

  • in March of 2010,

  • and I asked if my family could visit their lab.

  • I emailed it to the eye bank that arranged the donation,

  • the Old Dominion Eye Foundation,

  • and asked if they could send it to the right person.

  • They said that they had never done this before,

  • and they couldn't guarantee a response,

  • but they wouldn't be an obstacle, and they would deliver it.

  • Two days later, I got a response

  • from Dr. Arupa Ganguly of the University of Pennsylvania.

  • She thanked me for the donation,

  • and she explained that she is studying retinoblastoma,

  • which is a deadly cancer of the retina

  • that affects children under the age of five,

  • and she said that yes, we were invited to visit her lab.

  • So next we talked on the phone,

  • and one of the first things she said to me

  • was that she couldn't possibly imagine how we felt,

  • and that Thomas had given the ultimate sacrifice,

  • and that she seemed to feel indebted to us.

  • So I said, "Nothing against your study,

  • but we didn't actually pick it.

  • We donated to the system, and the system chose your study.

  • I said, "And second of all, bad things happen to children every day,

  • and if you didn't want these retinas,

  • they would probably be buried in the ground right now.

  • So to be able to participate in your study

  • gives Thomas's life a new layer of meaning.

  • So, never feel guilty about using this tissue."

  • Next, she explained to me how rare it was.

  • She had placed a request for this tissue six years earlier

  • with the National Disease Research Interchange.

  • She got only one sample of tissue that fit her criteria,

  • and it was Thomas's.

  • Next, we arranged a date for me to come visit the lab,

  • and we chose March 23, 2015, which was the twins' fifth birthday.

  • After we hung up, I emailed her some pictures of Thomas and Callum,

  • and a few weeks later, we received this T-shirt in the mail.

  • A few months later, Ross, Callum and I piled in the car

  • and we went for a road trip.

  • We met Arupa and her staff,

  • and Arupa said that when I told her not to feel guilty, that it was a relief,

  • and that she hadn't seen it from our perspective.

  • She also explained that Thomas had a secret code name.

  • The same way Henrietta Lacks is called HeLa,

  • Thomas was called RES 360.

  • RES means research,

  • and 360 means he was the 360th specimen

  • over the course of about 10 years.

  • She also shared with us a unique document,

  • and it was the shipping label

  • that sent his retinas from DC to Philadelphia.

  • This shipping label is like an heirloom to us now.

  • It's the same way that a military medal or a wedding certificate might be.

  • Arupa also explained that she is using Thomas's retina and his RNA

  • to try to inactivate the gene that causes tumor formation,

  • and she even showed us some results that were based on RES 360.

  • Then she took us to the freezer

  • and she showed us the two samples that she still has

  • that are still labeled RES 360.

  • There's two little ones left.

  • She said she saved it

  • because she doesn't know when she might get more.

  • After this, we went to the conference room

  • and we relaxed and we had lunch together,

  • and the lab staff presented Callum with a birthday gift.

  • It was a child's lab kit.

  • And they also offered him an internship.

  • (Laughter)

  • So in closing, I have two simple messages today.

  • One is that most of us probably don't think about donating to research.

  • I know I didn't. I think I'm a normal person.

  • But I did it.

  • It was a good experience, and I recommend it,

  • and it brought my family a lot of peace.

  • And second is if you work with human tissue

  • and you wonder about the donor and about the family,

  • write them a letter.

  • Tell them you received it, tell them what you're working on,

  • and invite them to visit your lab,

  • because that visit may be even more gratifying for you

  • than it is for them.

  • And I'd also like to ask you a favor.

  • If you're ever successful in arranging one of these visits,

  • please tell me about it.

  • The other part of my family's story

  • is that we ended up visiting all four facilities

  • that received Thomas's donations.

  • And we met amazing people doing inspiring work.

  • The way I see it now is that Thomas got into Harvard,

  • Duke and Penn --

  • (Laughter)

  • And he has a job at Cytonet,

  • and he has colleagues and he has coworkers

  • who are in the top of their fields.

  • And they need him in order to do their job.

  • And a life that once seemed brief and insignificant

  • revealed itself to be vital, everlasting and relevant.

  • And I only hope that my life can be as relevant.

  • Thank you.

  • (Applause)

I was three months pregnant with twins

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【TED】Sarah Gray: How my son's short life made a lasting difference (How my son's short life made a lasting difference | Sarah Gray)

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    Zenn posted on 2017/10/18
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