< Return to Video

How my son's short life made a lasting difference

  • 0:02 - 0:04
    I was three months pregnant with twins
  • 0:04 - 0:09
    when my husband Ross and I
    went to my second sonogram.
  • 0:09 - 0:12
    I was 35 years old at the time,
  • 0:12 - 0:15
    and I knew that that meant
    we had a higher risk
  • 0:15 - 0:18
    of having a child with a birth defect,
  • 0:18 - 0:21
    so Ross and I researched
    the standard birth defects,
  • 0:21 - 0:24
    and we felt reasonably prepared.
  • 0:24 - 0:26
    Well, nothing would have prepared us
  • 0:26 - 0:30
    for the bizarre diagnosis
    that we were about to face.
  • 0:30 - 0:34
    The doctor explained
    that one of our twins, Thomas,
  • 0:34 - 0:37
    had a fatal birth defect
    called anencephaly.
  • 0:37 - 0:41
    This means that his brain
    was not formed correctly
  • 0:41 - 0:44
    because part of his skull was missing.
  • 0:44 - 0:47
    Babies with this diagnosis
    typically die in utero
  • 0:47 - 0:51
    or within a few minutes, hours,
    or days of being born.
  • 0:53 - 0:56
    But the other twin, Callum,
  • 0:56 - 1:00
    appeared to be healthy
    as far as the doctor could tell,
  • 1:00 - 1:05
    and these twins were identical,
  • 1:05 - 1:07
    genetically identical.
  • 1:07 - 1:13
    So after a lot of questions about
    how this could have possibly happened,
  • 1:13 - 1:16
    a selective reduction was mentioned,
  • 1:16 - 1:19
    and while this procedure
    was not impossible,
  • 1:19 - 1:23
    it posed some unique risks
    for the healthy twin and for me,
  • 1:23 - 1:25
    so we decided to carry the pregnancy
  • 1:25 - 1:27
    to term.
  • 1:27 - 1:31
    So there I was, three months pregnant
    with two trimesters ahead of me
  • 1:31 - 1:33
    and I had to find a way
  • 1:33 - 1:37
    to manage my blood pressure and my stress.
  • 1:37 - 1:40
    And it felt like having a roommate
  • 1:40 - 1:44
    point a loaded gun at you for six months.
  • 1:44 - 1:47
    But I stared down the barrel of that gun
  • 1:47 - 1:50
    for so long that I saw a light
  • 1:50 - 1:52
    at the end of the tunnel.
  • 1:52 - 1:55
    While there was nothing we could do
    to prevent the tragedy,
  • 1:55 - 1:57
    I wanted to find a way
    for Thomas's brief life
  • 1:57 - 1:59
    to have some kind of positive impact.
  • 1:59 - 2:04
    So I asked my nurse about organ,
    eye, and tissue donation.
  • 2:04 - 2:08
    She connected with my local
    organ procurement organization,
  • 2:08 - 2:11
    the Washington Regional
    Transplant Community.
  • 2:11 - 2:14
    WRTC explained to me
  • 2:14 - 2:18
    that Thomas would probably be too small
    at birth to donate for transplant,
  • 2:18 - 2:22
    and I was shocked: I didn't even know
    you could be rejected for that.
  • 2:22 - 2:27
    But they said that he would be
    a good candidate to donate for research.
  • 2:27 - 2:29
    This helped me see Thomas in a new light.
  • 2:29 - 2:31
    As opposed to just a victim of a disease,
  • 2:31 - 2:36
    I started to see him as a possible key
    to unlock a medical mystery.
  • 2:36 - 2:39
    On March 23, 2010,
  • 2:39 - 2:43
    the twins were born
    and they were both born alive.
  • 2:43 - 2:46
    And just like the doctor said,
  • 2:46 - 2:49
    Thomas was missing
    the top part of his skull,
  • 2:49 - 2:51
    but he could nurse,
  • 2:51 - 2:52
    drink from a bottle,
  • 2:52 - 2:55
    cuddle and grab our fingers
    like a normal baby,
  • 2:55 - 2:58
    and he slept in our arms.
  • 2:58 - 3:02
    After six days, Thomas died
    in Ross's arms
  • 3:02 - 3:05
    surrounded by our family.
  • 3:05 - 3:09
    We called WRTC, who sent a van to our home
  • 3:09 - 3:13
    and brought him to Children's
    National Medical Center.
  • 3:13 - 3:17
    A few hours later, we got a call to say
    that the recovery was a success,
  • 3:17 - 3:20
    and Thomas's donations would be going
    to four different places.
  • 3:20 - 3:23
    His cord blood would go
    to Duke University.
  • 3:23 - 3:28
    His liver would go to a cell therapy
    company called Cytonet in Durham.
  • 3:28 - 3:32
    His corneas would go
    to Schepens Eye Research Institute,
  • 3:32 - 3:34
    which is part of Harvard Medical School,
  • 3:34 - 3:38
    and his retinas would go
    to the University of Pennsylvania.
  • 3:38 - 3:42
    A few days later, we had a funeral
    with our immediate family,
  • 3:42 - 3:44
    including baby Callum,
  • 3:44 - 3:46
    and we basically closed this chapter
  • 3:46 - 3:48
    in our lives.
  • 3:48 - 3:51
    But I did find myself wondering,
    what's happening now?
  • 3:51 - 3:53
    What are the researchers learning?
  • 3:53 - 3:57
    And was it even worthwhile to donate?
  • 3:57 - 4:01
    WRTC invited Ross and I
    to a grief retreat,
  • 4:01 - 4:03
    and we met about
    15 other grieving families
  • 4:03 - 4:08
    who had donated their loved one's
    organs for transplant.
  • 4:08 - 4:10
    Some of them had even received letters
  • 4:10 - 4:13
    from the people who received
    their loved one's organs
  • 4:13 - 4:15
    saying thank you.
  • 4:15 - 4:17
    I learned that they
    could even meet each other
  • 4:17 - 4:18
    if they both sign a waiver,
  • 4:18 - 4:21
    almost like an open adoption.
  • 4:21 - 4:23
    And I was so excited. I thought
    maybe I could write a letter
  • 4:23 - 4:26
    or maybe I could get a letter
    and learn about what happened.
  • 4:26 - 4:29
    But I was disappointed to learn
    that this process only exists
  • 4:29 - 4:31
    for people who donate for transplant.
  • 4:31 - 4:35
    So I was jealous:
    I had transplant envy, I guess.
  • 4:35 - 4:38
    But over the years that followed,
  • 4:38 - 4:40
    I learned a lot more about donation,
  • 4:40 - 4:43
    and I even got a job in the field.
  • 4:43 - 4:46
    And I came up with an idea.
  • 4:46 - 4:48
    I wrote a letter that started out,
  • 4:48 - 4:50
    "Dear Researcher."
  • 4:50 - 4:52
    I explained who I was,
  • 4:52 - 4:56
    and I asked if they could tell me
    why they requested infant retinas
  • 4:56 - 4:59
    in March of 2010,
  • 4:59 - 5:02
    and I asked if my family
    could visit their lab.
  • 5:02 - 5:05
    I emailed it to the eye bank
    that arranged the donation,
  • 5:05 - 5:08
    the Old Dominion Eye Foundation,
  • 5:08 - 5:11
    and asked if they could
    send it to the right person.
  • 5:11 - 5:13
    They said that they had
    never done this before,
  • 5:13 - 5:15
    and they couldn't guarantee a response,
  • 5:15 - 5:19
    but they wouldn't be an obstacle
    and they would deliver it.
  • 5:19 - 5:21
    Two days later, I got a response
  • 5:21 - 5:25
    from Dr. Arupa Ganguly
    of the University of Pennsylvania.
  • 5:25 - 5:28
    She thanked me for the donation,
    and she explained that she is studying
  • 5:28 - 5:29
    retinoblastoma,
  • 5:29 - 5:32
    which is a deadly cancer of the retina
    that affects children
  • 5:32 - 5:33
    under the age of five,
  • 5:33 - 5:37
    and she said that yes,
    we were invited to visit her lab.
  • 5:37 - 5:38
    So next we talked on the phone,
  • 5:38 - 5:41
    and one of the first things
    she said to me was that
  • 5:41 - 5:43
    she couldn't possibly imagine how we felt,
  • 5:43 - 5:46
    and that Thomas had given
    the ultimate sacrifice,
  • 5:46 - 5:49
    and that she seemed
    to feel indebted to us.
  • 5:49 - 5:52
    So I said, "Um,
    nothing against your study,
  • 5:52 - 5:54
    but we didn't actually pick it.
  • 5:54 - 5:57
    We donated to the system,
    and the system chose your study."
  • 5:57 - 6:00
    I said, "And second of all,
    bad things happen to children
  • 6:00 - 6:02
    every day,
  • 6:02 - 6:04
    and if you didn't want these retinas,
  • 6:04 - 6:07
    they would probably
    be buried in the ground right now.
  • 6:07 - 6:10
    So to be able to participate in your study
  • 6:10 - 6:14
    gives Thomas's life a new
    layer of meaning.
  • 6:14 - 6:18
    So never feel guilty
    about using this tissue."
  • 6:18 - 6:20
    Next she explained to me how rare it was.
  • 6:20 - 6:23
    She had placed a request for this tissue
  • 6:23 - 6:24
    six years earlier
  • 6:24 - 6:27
    with the National Disease
    Research Interchange.
  • 6:27 - 6:33
    She got only one sample of tissue
    that fit her criteria and it was Thomas's.
  • 6:33 - 6:37
    Next we arranged a date for me
    to come visit the lab,
  • 6:37 - 6:43
    and we chose March 23, 2015,
    which was the twins' fifth birthday.
  • 6:43 - 6:46
    After we hung up, I emailed her
    some pictures of Thomas and Callum,
  • 6:46 - 6:50
    and a few weeks later we received
    this t-shirt in the mail.
  • 6:51 - 6:54
    A few months later, Ross, Callum,
    and I piled in the car
  • 6:54 - 6:56
    and we went for a road trip.
  • 6:56 - 6:58
    We met Arupa and her staff,
  • 6:58 - 7:02
    and Arupa said that when I told her
    not to feel guilty that it was a relief,
  • 7:02 - 7:06
    and that she hadn't seen it
    from our perspective.
  • 7:06 - 7:11
    She also explained that Thomas
    had a secret code name.
  • 7:11 - 7:14
    The same way Henrietta Lacks
    is called HeLa,
  • 7:14 - 7:17
    Thomas was called RES360.
  • 7:17 - 7:20
    RES means research,
    and 360 means he was
  • 7:20 - 7:22
    the 360th specimen
  • 7:22 - 7:25
    over the course of about 10 years.
  • 7:25 - 7:28
    She also shared with us
  • 7:28 - 7:29
    a unique document,
  • 7:29 - 7:32
    and it was the shipping label
  • 7:32 - 7:36
    that sent his retinas
    from DC to Philadelphia.
  • 7:36 - 7:40
    This shipping label is like
    an heirloom to us now.
  • 7:40 - 7:45
    It's the same way that a military medal
    or a wedding certificate might be.
  • 7:45 - 7:50
    Arupa also explained that she
    is using Thomas's retina and his RNA
  • 7:50 - 7:54
    to try to inactivate the gene
    that causes tumor formation,
  • 7:54 - 7:58
    and she even showed us some results
    that were based on RES360.
  • 7:58 - 8:00
    Then she took us to the freezer
  • 8:00 - 8:03
    and she showed us the two samples
    that she still has
  • 8:03 - 8:06
    that are still labeled RES360.
  • 8:06 - 8:08
    There's two little ones left.
  • 8:08 - 8:09
    She said she saved it
  • 8:09 - 8:13
    because she doesn't know
    when she might get more.
  • 8:13 - 8:15
    After this we went to the conference room
  • 8:15 - 8:17
    and we relaxed and we had lunch together,
  • 8:17 - 8:22
    and the lab staff presented Callum
    with a birthday gift.
  • 8:22 - 8:25
    It was a child's lab kit.
  • 8:25 - 8:28
    And they also offered him an internship.
  • 8:28 - 8:30
    (Laughter)
  • 8:30 - 8:34
    So in closing, I have two
    simple messages today.
  • 8:34 - 8:38
    One is that most of us probably don't
    think about donating to research.
  • 8:38 - 8:40
    I know I didn't.
    I think I'm a normal person.
  • 8:40 - 8:43
    But I did it. It was a good experience,
    and I recommend it,
  • 8:43 - 8:46
    and it brought my family a lot of peace.
  • 8:46 - 8:49
    And second is if you work
    with human tissue
  • 8:49 - 8:51
    and you wonder about the donor
    and you wonder about the family,
  • 8:51 - 8:52
    write them a letter.
  • 8:52 - 8:55
    Tell them you received it,
    tell them what you're working on,
  • 8:55 - 8:57
    and invite them to visit your lab,
  • 8:57 - 8:59
    because that visit might be
    even more gratifying for you
  • 8:59 - 9:01
    than it is for them.
  • 9:01 - 9:03
    And I'd also like to ask you a favor.
  • 9:03 - 9:05
    If you're ever successful in arranging
    one of these visits,
  • 9:05 - 9:08
    please tell me about it.
  • 9:08 - 9:11
    The other part of my family story
    is that we ended up visiting
  • 9:11 - 9:14
    all four facilities that received
    Thomas's donations,
  • 9:14 - 9:16
    and we met amazing people
  • 9:16 - 9:18
    doing inspiring work.
  • 9:18 - 9:21
    The way I see it now is that
  • 9:21 - 9:23
    Thomas got into Harvard,
  • 9:23 - 9:28
    Duke, and Penn -- (Laughter) --
  • 9:28 - 9:31
    and he has a job at Cytonet,
  • 9:31 - 9:34
    and he has colleagues
    and he has coworkers
  • 9:34 - 9:36
    who are in the top of their fields,
  • 9:36 - 9:39
    and they need him
    in order to do their job.
  • 9:39 - 9:44
    And a life that once seemed
    brief and insignificant
  • 9:44 - 9:46
    revealed itself
  • 9:46 - 9:50
    to be vital, everlasting, and relevant.
  • 9:50 - 9:54
    And I only hope that my life
    can be as relevant.
  • 9:54 - 9:55
    Thank you.
  • 9:55 - 10:01
    (Applause)
Title:
How my son's short life made a lasting difference
Speaker:
Sarah Gray
Description:

more » « less
Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
10:17

English subtitles

Revisions Compare revisions