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 - 10:00(Applause)
- Title:
- How my son's short life made a lasting difference
- Speaker:
- Sarah Gray
- Description:
-
Sarah Gray speaks at TEDMED 2015
- 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 |