How my son's short life made a lasting difference
-
0:02 - 0:04I was three months pregnant with twins
-
0:04 - 0:08when my husband Ross and I
went to my second sonogram. -
0:09 - 0:12I was 35 years old at the time,
-
0:12 - 0:15and I knew that that meant
we had a higher risk -
0:15 - 0:17of having a child with a birth defect.
-
0:18 - 0:21So, Ross and I researched
the standard birth defects, -
0:21 - 0:23and we felt reasonably prepared.
-
0:24 - 0:26Well, nothing would have prepared us
-
0:26 - 0:29for the bizarre diagnosis
that we were about to face. -
0:30 - 0:34The doctor explained
that one of our twins, Thomas, -
0:34 - 0:37had a fatal birth defect
called anencephaly. -
0:37 - 0:41This means that his brain
was not formed correctly -
0:41 - 0:43because part of his skull was missing.
-
0:44 - 0:47Babies with this diagnosis
typically die in utero -
0:47 - 0:51or within a few minutes, hours
or days of being born. -
0:53 - 0:56But the other twin, Callum,
-
0:56 - 1:00appeared to be healthy,
as far as the doctor could tell, -
1:00 - 1:04and these twins were identical,
-
1:04 - 1:06genetically identical.
-
1:08 - 1:13So after a lot of questions about
how this could have possibly happened, -
1:13 - 1:16a selective reduction was mentioned,
-
1:16 - 1:19and while this procedure
was not impossible, -
1:19 - 1:23it posed some unique risks
for the healthy twin and for me, -
1:23 - 1:26so we decided to carry
the pregnancy to term. -
1:27 - 1:31So there I was, three months pregnant,
with two trimesters ahead of me, -
1:31 - 1:36and I had to find a way to manage
my blood pressure and my stress. -
1:37 - 1:42And it felt like having a roommate
point a loaded gun at you for six months. -
1:44 - 1:48But I stared down
the barrel of that gun for so long -
1:49 - 1:51that I saw a light
at the end of the tunnel. -
1:52 - 1:55While there was nothing we could do
to prevent the tragedy, -
1:55 - 1:57I wanted to find a way
for Thomas's brief life -
1:57 - 1:59to have some kind of positive impact.
-
1:59 - 2:03So I asked my nurse about organ,
eye and tissue donation. -
2:04 - 2:08She connected with our local
organ-procurement organization, -
2:08 - 2:10the Washington Regional
Transplant Community. -
2:11 - 2:14WRTC explained to me
-
2:14 - 2:18that Thomas would probably be too small
at birth to donate for transplant, -
2:18 - 2:20and I was shocked:
-
2:20 - 2:22I didn't even know
you could be rejected for that. -
2:22 - 2:25But they said that he would be
a good candidate to donate for research. -
2:26 - 2:28This helped me see Thomas in a new light.
-
2:28 - 2:31As opposed to just a victim of a disease,
-
2:31 - 2:35I started to see him as a possible key
to unlock a medical mystery. -
2:36 - 2:40On March 23, 2010,
-
2:40 - 2:42the twins were born,
and they were both born alive. -
2:44 - 2:46And just like the doctor said,
-
2:46 - 2:49Thomas was missing
the top part of his skull, -
2:49 - 2:50but he could nurse,
-
2:50 - 2:52drink from a bottle,
-
2:52 - 2:55cuddle and grab our fingers
like a normal baby, -
2:55 - 2:57and he slept in our arms.
-
2:58 - 3:01After six days, Thomas died in Ross's arms
-
3:01 - 3:03surrounded by our family.
-
3:05 - 3:09We called WRTC, who sent a van to our home
-
3:09 - 3:12and brought him to Children's
National Medical Center. -
3:13 - 3:17A few hours later, we got a call to say
that the recovery was a success, -
3:17 - 3:20and Thomas's donations
would be going to four different places. -
3:20 - 3:23His cord blood would go
to Duke University. -
3:23 - 3:27His liver would go to a cell-therapy
company called Cytonet in Durham. -
3:28 - 3:32His corneas would go
to Schepens Eye Research Institute, -
3:32 - 3:34which is part of Harvard Medical School,
-
3:34 - 3:37and his retinas would go
to the University of Pennsylvania. -
3:38 - 3:42A few days later, we had a funeral
with our immediate family, -
3:42 - 3:44including baby Callum,
-
3:44 - 3:47and we basically
closed this chapter in our lives. -
3:48 - 3:51But I did find myself wondering,
what's happening now? -
3:51 - 3:53What are the researchers learning?
-
3:53 - 3:55And was it even worthwhile to donate?
-
3:57 - 4:01WRTC invited Ross and I
to a grief retreat, -
4:01 - 4:04and we met about
15 other grieving families -
4:04 - 4:06who had donated their loved one's
organs for transplant. -
4:07 - 4:10Some of them had even received letters
-
4:10 - 4:13from the people who received
their loved one's organs, -
4:13 - 4:14saying thank you.
-
4:15 - 4:17I learned that they
could even meet each other -
4:17 - 4:19if they'd both sign a waiver,
-
4:19 - 4:20almost like an open adoption.
-
4:21 - 4:24And I was so excited,
I thought maybe I could write a letter -
4:24 - 4:26or I could get a letter
and learn about what happened. -
4:26 - 4:28But I was disappointed to learn
-
4:28 - 4:31that this process only exists
for people who donate for transplant. -
4:31 - 4:34So I was jealous.
I had transplant envy, I guess. -
4:34 - 4:36(Laughter)
-
4:36 - 4:38But over the years that followed,
-
4:38 - 4:40I learned a lot more about donation,
-
4:41 - 4:43and I even got a job in the field.
-
4:43 - 4:44And I came up with an idea.
-
4:46 - 4:48I wrote a letter that started out,
-
4:48 - 4:49"Dear Researcher."
-
4:50 - 4:52I explained who I was,
-
4:52 - 4:56and I asked if they could tell me
why they requested infant retinas -
4:56 - 4:58in March of 2010,
-
4:58 - 5:01and I asked if my family
could visit their lab. -
5:02 - 5:05I emailed it to the eye bank
that arranged the donation, -
5:05 - 5:07the Old Dominion Eye Foundation,
-
5:07 - 5:10and asked if they could
send it to the right person. -
5:10 - 5:13They said that they had
never done this before, -
5:13 - 5:15and they couldn't guarantee a response,
-
5:15 - 5:17but they wouldn't be an obstacle,
and they would deliver it. -
5:19 - 5:21Two days later, I got a response
-
5:21 - 5:24from Dr. Arupa Ganguly
of the University of Pennsylvania. -
5:25 - 5:26She thanked me for the donation,
-
5:26 - 5:29and she explained
that she is studying retinoblastoma, -
5:29 - 5:31which is a deadly cancer of the retina
-
5:31 - 5:33that affects children
under the age of five, -
5:33 - 5:36and she said that yes,
we were invited to visit her lab. -
5:37 - 5:38So next we talked on the phone,
-
5:38 - 5:40and one of the first things she said to me
-
5:40 - 5:43was that she couldn't possibly
imagine how we felt, -
5:43 - 5:46and that Thomas had given
the ultimate sacrifice, -
5:46 - 5:48and that she seemed
to feel indebted to us. -
5:49 - 5:52So I said, "Nothing against your study,
-
5:52 - 5:54but we didn't actually pick it.
-
5:54 - 5:57We donated to the system,
and the system chose your study. -
5:57 - 6:02I said, "And second of all,
bad things happen to children every day, -
6:02 - 6:04and if you didn't want these retinas,
-
6:04 - 6:07they would probably
be buried in the ground right now. -
6:07 - 6:10So to be able to participate in your study
-
6:10 - 6:14gives Thomas's life
a new layer of meaning. -
6:14 - 6:17So, never feel guilty
about using this tissue." -
6:18 - 6:20Next, she explained to me how rare it was.
-
6:20 - 6:24She had placed a request
for this tissue six years earlier -
6:24 - 6:26with the National Disease
Research Interchange. -
6:27 - 6:30She got only one sample of tissue
that fit her criteria, -
6:31 - 6:32and it was Thomas's.
-
6:33 - 6:37Next, we arranged a date for me
to come visit the lab, -
6:37 - 6:41and we chose March 23, 2015,
which was the twins' fifth birthday. -
6:43 - 6:46After we hung up, I emailed her
some pictures of Thomas and Callum, -
6:47 - 6:49and a few weeks later,
we received this T-shirt in the mail. -
6:51 - 6:54A few months later, Ross, Callum
and I piled in the car -
6:54 - 6:56and we went for a road trip.
-
6:56 - 6:58We met Arupa and her staff,
-
6:58 - 7:02and Arupa said that when I told her
not to feel guilty, that it was a relief, -
7:02 - 7:05and that she hadn't seen it
from our perspective. -
7:06 - 7:10She also explained that Thomas
had a secret code name. -
7:11 - 7:14The same way Henrietta Lacks
is called HeLa, -
7:14 - 7:17Thomas was called RES 360.
-
7:17 - 7:19RES means research,
-
7:19 - 7:22and 360 means he was the 360th specimen
-
7:22 - 7:24over the course of about 10 years.
-
7:25 - 7:29She also shared with us a unique document,
-
7:29 - 7:32and it was the shipping label
-
7:32 - 7:35that sent his retinas
from DC to Philadelphia. -
7:36 - 7:40This shipping label
is like an heirloom to us now. -
7:40 - 7:44It's the same way that a military medal
or a wedding certificate might be. -
7:45 - 7:50Arupa also explained that she is using
Thomas's retina and his RNA -
7:50 - 7:54to try to inactivate the gene
that causes tumor formation, -
7:54 - 7:57and she even showed us some results
that were based on RES 360. -
7:58 - 8:00Then she took us to the freezer
-
8:00 - 8:03and she showed us the two samples
that she still has -
8:03 - 8:06that are still labeled RES 360.
-
8:06 - 8:07There's two little ones left.
-
8:08 - 8:09She said she saved it
-
8:09 - 8:11because she doesn't know
when she might get more. -
8:13 - 8:15After this, we went to the conference room
-
8:15 - 8:17and we relaxed and we had lunch together,
-
8:17 - 8:22and the lab staff presented Callum
with a birthday gift. -
8:22 - 8:24It was a child's lab kit.
-
8:24 - 8:27And they also offered him an internship.
-
8:27 - 8:30(Laughter)
-
8:30 - 8:33So in closing, I have two
simple messages today. -
8:34 - 8:37One is that most of us probably
don't think about donating to research. -
8:37 - 8:41I know I didn't.
I think I'm a normal person. -
8:41 - 8:42But I did it.
-
8:42 - 8:44It was a good experience,
and I recommend it, -
8:44 - 8:46and it brought my family a lot of peace.
-
8:46 - 8:49And second is if you work
with human tissue -
8:49 - 8:51and you wonder about the donor
and about the family, -
8:51 - 8:52write them a letter.
-
8:52 - 8:55Tell them you received it,
tell them what you're working on, -
8:55 - 8:57and invite them to visit your lab,
-
8:57 - 9:00because that visit may be
even more gratifying for you -
9:00 - 9:01than it is for them.
-
9:01 - 9:03And I'd also like to ask you a favor.
-
9:03 - 9:06If you're ever successful
in arranging one of these visits, -
9:06 - 9:07please tell me about it.
-
9:08 - 9:10The other part of my family's story
-
9:10 - 9:12is that we ended up visiting
all four facilities -
9:12 - 9:14that received Thomas's donations.
-
9:14 - 9:17And we met amazing people
doing inspiring work. -
9:18 - 9:23The way I see it now
is that Thomas got into Harvard, -
9:23 - 9:25Duke and Penn --
-
9:25 - 9:29(Laughter)
-
9:29 - 9:31And he has a job at Cytonet,
-
9:31 - 9:34and he has colleagues and he has coworkers
-
9:34 - 9:36who are in the top of their fields.
-
9:36 - 9:38And they need him
in order to do their job. -
9:39 - 9:44And a life that once seemed
brief and insignificant -
9:44 - 9:49revealed itself to be vital,
everlasting and relevant. -
9:50 - 9:53And I only hope that my life
can be as relevant. -
9:54 - 9:55Thank you.
-
9:55 - 10:04(Applause)
- Title:
- How my son's short life made a lasting difference
- Speaker:
- Sarah Gray
- Description:
-
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.
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 10:17
Brian Greene edited English subtitles for Sarah Gray speaks at TEDMED 2015 | ||
Brian Greene approved English subtitles for Sarah Gray speaks at TEDMED 2015 | ||
Brian Greene edited English subtitles for Sarah Gray speaks at TEDMED 2015 | ||
Brian Greene edited English subtitles for Sarah Gray speaks at TEDMED 2015 | ||
Brian Greene edited English subtitles for Sarah Gray speaks at TEDMED 2015 | ||
Brian Greene edited English subtitles for Sarah Gray speaks at TEDMED 2015 | ||
Brian Greene edited English subtitles for Sarah Gray speaks at TEDMED 2015 | ||
Krystian Aparta accepted English subtitles for Sarah Gray speaks at TEDMED 2015 |