TEDMED 2015
Sarah Gray: How my son's short life made a lasting difference
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After Sarah Gray's unborn son Thomas was diagnosed with anencephaly, a terminal condition, she decided to turn her family's tragedy into an extraordinary gift and donate his organs to scientific research. In this tribute to life and discovery, she shares her journey to find meaning in loss and spreads a message of hope for other grieving families.
Sarah Gray - Researchers' dream donator
Sarah Gray found meaning in tragic loss by donating the organs of her newborn son to advance scientific research. Full bio
Sarah Gray found meaning in tragic loss by donating the organs of her newborn son to advance scientific research. Full bio
Double-click the English transcript below to play the video.
00:13
I was three months pregnant with twins
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when my husband Ross and I
went to my second sonogram.
went to my second sonogram.
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I was 35 years old at the time,
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and I knew that that meant
we had a higher risk
we had a higher risk
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of having a child with a birth defect.
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So, Ross and I researched
the standard birth defects,
the standard birth defects,
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and we felt reasonably prepared.
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Well, nothing would have prepared us
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for the bizarre diagnosis
that we were about to face.
that we were about to face.
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The doctor explained
that one of our twins, Thomas,
that one of our twins, Thomas,
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had a fatal birth defect
called anencephaly.
called anencephaly.
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This means that his brain
was not formed correctly
was not formed correctly
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because part of his skull was missing.
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Babies with this diagnosis
typically die in utero
typically die in utero
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or within a few minutes, hours
or days of being born.
or days of being born.
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But the other twin, Callum,
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appeared to be healthy,
as far as the doctor could tell,
as far as the doctor could tell,
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and these twins were identical,
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genetically identical.
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So after a lot of questions about
how this could have possibly happened,
how this could have possibly happened,
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a selective reduction was mentioned,
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and while this procedure
was not impossible,
was not impossible,
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it posed some unique risks
for the healthy twin and for me,
for the healthy twin and for me,
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so we decided to carry
the pregnancy to term.
the pregnancy to term.
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So there I was, three months pregnant,
with two trimesters ahead of me,
with two trimesters ahead of me,
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and I had to find a way to manage
my blood pressure and my stress.
my blood pressure and my stress.
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And it felt like having a roommate
point a loaded gun at you for six months.
point a loaded gun at you for six months.
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But I stared down
the barrel of that gun for so long
the barrel of that gun for so long
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that I saw a light
at the end of the tunnel.
at the end of the tunnel.
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While there was nothing we could do
to prevent the tragedy,
to prevent the tragedy,
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I wanted to find a way
for Thomas's brief life
for Thomas's brief life
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to have some kind of positive impact.
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So I asked my nurse about organ,
eye and tissue donation.
eye and tissue donation.
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She connected with our local
organ-procurement organization,
organ-procurement organization,
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the Washington Regional
Transplant Community.
Transplant Community.
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WRTC explained to me
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that Thomas would probably be too small
at birth to donate for transplant,
at birth to donate for transplant,
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and I was shocked:
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I didn't even know
you could be rejected for that.
you could be rejected for that.
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But they said that he would be
a good candidate to donate for research.
a good candidate to donate for research.
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This helped me see Thomas in a new light.
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As opposed to just a victim of a disease,
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I started to see him as a possible key
to unlock a medical mystery.
to unlock a medical mystery.
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On March 23, 2010,
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the twins were born,
and they were both born alive.
and they were both born alive.
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And just like the doctor said,
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Thomas was missing
the top part of his skull,
the top part of his skull,
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but he could nurse,
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drink from a bottle,
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cuddle and grab our fingers
like a normal baby,
like a normal baby,
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and he slept in our arms.
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After six days, Thomas died in Ross's arms
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surrounded by our family.
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We called WRTC, who sent a van to our home
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and brought him to Children's
National Medical Center.
National Medical Center.
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A few hours later, we got a call to say
that the recovery was a success,
that the recovery was a success,
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and Thomas's donations
would be going to four different places.
would be going to four different places.
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His cord blood would go
to Duke University.
to Duke University.
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His liver would go to a cell-therapy
company called Cytonet in Durham.
company called Cytonet in Durham.
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His corneas would go
to Schepens Eye Research Institute,
to Schepens Eye Research Institute,
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which is part of Harvard Medical School,
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and his retinas would go
to the University of Pennsylvania.
to the University of Pennsylvania.
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A few days later, we had a funeral
with our immediate family,
with our immediate family,
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including baby Callum,
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and we basically
closed this chapter in our lives.
closed this chapter in our lives.
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But I did find myself wondering,
what's happening now?
what's happening now?
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What are the researchers learning?
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And was it even worthwhile to donate?
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WRTC invited Ross and I
to a grief retreat,
to a grief retreat,
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and we met about
15 other grieving families
15 other grieving families
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who had donated their loved one's
organs for transplant.
organs for transplant.
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Some of them had even received letters
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from the people who received
their loved one's organs,
their loved one's organs,
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saying thank you.
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I learned that they
could even meet each other
could even meet each other
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if they'd both sign a waiver,
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almost like an open adoption.
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And I was so excited,
I thought maybe I could write a letter
I thought maybe I could write a letter
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or I could get a letter
and learn about what happened.
and learn about what happened.
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But I was disappointed to learn
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that this process only exists
for people who donate for transplant.
for people who donate for transplant.
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So I was jealous.
I had transplant envy, I guess.
I had transplant envy, I guess.
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(Laughter)
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But over the years that followed,
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I learned a lot more about donation,
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and I even got a job in the field.
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And I came up with an idea.
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I wrote a letter that started out,
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"Dear Researcher."
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I explained who I was,
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and I asked if they could tell me
why they requested infant retinas
why they requested infant retinas
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in March of 2010,
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and I asked if my family
could visit their lab.
could visit their lab.
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I emailed it to the eye bank
that arranged the donation,
that arranged the donation,
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the Old Dominion Eye Foundation,
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and asked if they could
send it to the right person.
send it to the right person.
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They said that they had
never done this before,
never done this before,
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and they couldn't guarantee a response,
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but they wouldn't be an obstacle,
and they would deliver it.
and they would deliver it.
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Two days later, I got a response
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from Dr. Arupa Ganguly
of the University of Pennsylvania.
of the University of Pennsylvania.
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She thanked me for the donation,
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and she explained
that she is studying retinoblastoma,
that she is studying retinoblastoma,
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which is a deadly cancer of the retina
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that affects children
under the age of five,
under the age of five,
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and she said that yes,
we were invited to visit her lab.
we were invited to visit her lab.
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So next we talked on the phone,
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and one of the first things she said to me
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was that she couldn't possibly
imagine how we felt,
imagine how we felt,
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and that Thomas had given
the ultimate sacrifice,
the ultimate sacrifice,
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and that she seemed
to feel indebted to us.
to feel indebted to us.
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So I said, "Nothing against your study,
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but we didn't actually pick it.
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We donated to the system,
and the system chose your study.
and the system chose your study.
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I said, "And second of all,
bad things happen to children every day,
bad things happen to children every day,
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and if you didn't want these retinas,
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they would probably
be buried in the ground right now.
be buried in the ground right now.
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So to be able to participate in your study
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gives Thomas's life
a new layer of meaning.
a new layer of meaning.
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So, never feel guilty
about using this tissue."
about using this tissue."
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Next, she explained to me how rare it was.
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She had placed a request
for this tissue six years earlier
for this tissue six years earlier
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with the National Disease
Research Interchange.
Research Interchange.
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She got only one sample of tissue
that fit her criteria,
that fit her criteria,
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and it was Thomas's.
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Next, we arranged a date for me
to come visit the lab,
to come visit the lab,
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and we chose March 23, 2015,
which was the twins' fifth birthday.
which was the twins' fifth birthday.
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After we hung up, I emailed her
some pictures of Thomas and Callum,
some pictures of Thomas and Callum,
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and a few weeks later,
we received this T-shirt in the mail.
we received this T-shirt in the mail.
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A few months later, Ross, Callum
and I piled in the car
and I piled in the car
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and we went for a road trip.
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We met Arupa and her staff,
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and Arupa said that when I told her
not to feel guilty, that it was a relief,
not to feel guilty, that it was a relief,
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and that she hadn't seen it
from our perspective.
from our perspective.
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She also explained that Thomas
had a secret code name.
had a secret code name.
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The same way Henrietta Lacks
is called HeLa,
is called HeLa,
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Thomas was called RES 360.
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RES means research,
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and 360 means he was the 360th specimen
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over the course of about 10 years.
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She also shared with us a unique document,
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and it was the shipping label
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that sent his retinas
from DC to Philadelphia.
from DC to Philadelphia.
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This shipping label
is like an heirloom to us now.
is like an heirloom to us now.
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It's the same way that a military medal
or a wedding certificate might be.
or a wedding certificate might be.
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Arupa also explained that she is using
Thomas's retina and his RNA
Thomas's retina and his RNA
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to try to inactivate the gene
that causes tumor formation,
that causes tumor formation,
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and she even showed us some results
that were based on RES 360.
that were based on RES 360.
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Then she took us to the freezer
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and she showed us the two samples
that she still has
that she still has
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that are still labeled RES 360.
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There's two little ones left.
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She said she saved it
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because she doesn't know
when she might get more.
when she might get more.
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After this, we went to the conference room
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and we relaxed and we had lunch together,
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and the lab staff presented Callum
with a birthday gift.
with a birthday gift.
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It was a child's lab kit.
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And they also offered him an internship.
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(Laughter)
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So in closing, I have two
simple messages today.
simple messages today.
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One is that most of us probably
don't think about donating to research.
don't think about donating to research.
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I know I didn't.
I think I'm a normal person.
I think I'm a normal person.
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But I did it.
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It was a good experience,
and I recommend it,
and I recommend it,
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and it brought my family a lot of peace.
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And second is if you work
with human tissue
with human tissue
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and you wonder about the donor
and about the family,
and about the family,
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write them a letter.
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Tell them you received it,
tell them what you're working on,
tell them what you're working on,
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and invite them to visit your lab,
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because that visit may be
even more gratifying for you
even more gratifying for you
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than it is for them.
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And I'd also like to ask you a favor.
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If you're ever successful
in arranging one of these visits,
in arranging one of these visits,
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please tell me about it.
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The other part of my family's story
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is that we ended up visiting
all four facilities
all four facilities
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that received Thomas's donations.
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And we met amazing people
doing inspiring work.
doing inspiring work.
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The way I see it now
is that Thomas got into Harvard,
is that Thomas got into Harvard,
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Duke and Penn --
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(Laughter)
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And he has a job at Cytonet,
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and he has colleagues and he has coworkers
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who are in the top of their fields.
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And they need him
in order to do their job.
in order to do their job.
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And a life that once seemed
brief and insignificant
brief and insignificant
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revealed itself to be vital,
everlasting and relevant.
everlasting and relevant.
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And I only hope that my life
can be as relevant.
can be as relevant.
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Thank you.
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(Applause)
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ABOUT THE SPEAKER
Sarah Gray - Researchers' dream donatorSarah Gray found meaning in tragic loss by donating the organs of her newborn son to advance scientific research.
Why you should listen
While struggling to cope with the loss of their infant son Thomas, Sarah Gray and her family met the researchers who received his eye, liver and cord blood donations. This journey garnered national and international media attention and brought profound peace to the Gray family.
Gray is the director of marketing and public affairs for the American Association of Tissue Banks and a member of the AATB Donor Family Guidance Document Committee. She is author of a forthcoming memoir from HarperOne, A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science.
Gray holds a BA in Communications from Marquette University and a Masters in Public Communication from American University, where her capstone topic was nondirected kidney donation. She lives in Washington, DC with her husband Ross and children, Callum and Jocelyn.
Sarah Gray | Speaker | TED.com