9:59:59.000,9:59:59.000
I was three months pregnant with twins

9:59:59.000,9:59:59.000
when my husband Ross and I[br]went to my second sonogram.

9:59:59.000,9:59:59.000
I was 35 years old at the time,

9:59:59.000,9:59:59.000
and I knew that that meant[br]we had a higher risk

9:59:59.000,9:59:59.000
of having a child with a birth defect,

9:59:59.000,9:59:59.000
so Ross and I researched[br]the standard birth defects,

9:59:59.000,9:59:59.000
and we felt reasonably prepared.

9:59:59.000,9:59:59.000
Well, nothing would have prepared us

9:59:59.000,9:59:59.000
for the bizarre diagnosis[br]that we were about to face.

9:59:59.000,9:59:59.000
The doctor explained[br]that one of our twins, Thomas,

9:59:59.000,9:59:59.000
had a fatal birth defect[br]called anencephaly.

9:59:59.000,9:59:59.000
This means that his brain[br]was not formed correctly

9:59:59.000,9:59:59.000
because part of his skull was missing.

9:59:59.000,9:59:59.000
Babies with this diagnosis[br]typically die in utero

9:59:59.000,9:59:59.000
or within a few minutes, hours,[br]or days of being born.

9:59:59.000,9:59:59.000
But the other twin, Callum,

9:59:59.000,9:59:59.000
appeared to be healthy[br]as far as the doctor could tell,

9:59:59.000,9:59:59.000
and these twins were identical,

9:59:59.000,9:59:59.000
genetically identical.

9:59:59.000,9:59:59.000
So after a lot of questions about[br]how this could have possibly happened,

9:59:59.000,9:59:59.000
a selective reduction was mentioned,

9:59:59.000,9:59:59.000
and while this procedure[br]was not impossible,

9:59:59.000,9:59:59.000
it posed some unique risks[br]for the healthy twin and for me,

9:59:59.000,9:59:59.000
so we decided to carry the pregnancy

9:59:59.000,9:59:59.000
to term.

9:59:59.000,9:59:59.000
So there I was, three months pregnant[br]with two trimesters ahead of me

9:59:59.000,9:59:59.000
and I had to find a way

9:59:59.000,9:59:59.000
to manage my blood pressure and my stress.

9:59:59.000,9:59:59.000
And it felt like having a roommate

9:59:59.000,9:59:59.000
point a loaded gun at you for six months.

9:59:59.000,9:59:59.000
But I stared down the barrel of that gun

9:59:59.000,9:59:59.000
for so long that I saw a light

9:59:59.000,9:59:59.000
at the end of the tunnel.

9:59:59.000,9:59:59.000
While there was nothing we could do[br]to prevent the tragedy,

9:59:59.000,9:59:59.000
I wanted to find a way[br]for Thomas's brief life

9:59:59.000,9:59:59.000
to have some kind of positive impact.

9:59:59.000,9:59:59.000
So I asked my nurse about organ,[br]eye, and tissue donation.

9:59:59.000,9:59:59.000
She connected with my local[br]organ procurement organization,

9:59:59.000,9:59:59.000
the Washington Regional[br]Transplant Community.

9:59:59.000,9:59:59.000
WRTC explained to me

9:59:59.000,9:59:59.000
that Thomas would probably be too small[br]at birth to donate for transplant,

9:59:59.000,9:59:59.000
and I was shocked: I didn't even know[br]you could be rejected for that.

9:59:59.000,9:59:59.000
But they said that he would be[br]a good candidate to donate for research.

9:59:59.000,9:59:59.000
This helped me see Thomas in a new light.

9:59:59.000,9:59:59.000
As opposed to just a victim of a disease,

9:59:59.000,9:59:59.000
I started to see him as a possible key[br]to unlock a medical mystery.

9:59:59.000,9:59:59.000
On March 23, 2010,

9:59:59.000,9:59:59.000
the twins were born[br]and they were both born alive.

9:59:59.000,9:59:59.000
And just like the doctor said,

9:59:59.000,9:59:59.000
Thomas was missing[br]the top part of his skull,

9:59:59.000,9:59:59.000
but he could nurse,

9:59:59.000,9:59:59.000
drink from a bottle,

9:59:59.000,9:59:59.000
cuddle and grab our fingers[br]like a normal baby,

9:59:59.000,9:59:59.000
and he slept in our arms.

9:59:59.000,9:59:59.000
After six days, Thomas died[br]in Ross's arms

9:59:59.000,9:59:59.000
surrounded by our family.

9:59:59.000,9:59:59.000
We called WRTC, who sent a van to our home

9:59:59.000,9:59:59.000
and brought him to Children's[br]National Medical Center.

9:59:59.000,9:59:59.000
A few hours later, we got a call to say[br]that the recovery was a success,

9:59:59.000,9:59:59.000
and Thomas's donations would be going[br]to four different places.

9:59:59.000,9:59:59.000
His cord blood would go[br]to Duke University.

9:59:59.000,9:59:59.000
His liver would go to a cell therapy[br]company called Cytonet in Durham.

9:59:59.000,9:59:59.000
His corneas would go[br]to Schepens Eye Research Institute,

9:59:59.000,9:59:59.000
which is part of Harvard Medical School,

9:59:59.000,9:59:59.000
and his retinas would go[br]to the University of Pennsylvania.

9:59:59.000,9:59:59.000
A few days later, we had a funeral[br]with our immediate family,

9:59:59.000,9:59:59.000
including baby Callum,

9:59:59.000,9:59:59.000
and we basically closed this chapter

9:59:59.000,9:59:59.000
in our lives.

9:59:59.000,9:59:59.000
But I did find myself wondering,[br]what's happening now?

9:59:59.000,9:59:59.000
What are the researchers learning?

9:59:59.000,9:59:59.000
And was it even worthwhile to donate?

9:59:59.000,9:59:59.000
WRTC invited Ross and I[br]to a grief retreat,

9:59:59.000,9:59:59.000
and we met about[br]15 other grieving families

9:59:59.000,9:59:59.000
who had donated their loved one's[br]organs for transplant.

9:59:59.000,9:59:59.000
Some of them had even received letters

9:59:59.000,9:59:59.000
from the people who received[br]their loved one's organs

9:59:59.000,9:59:59.000
saying thank you.

9:59:59.000,9:59:59.000
I learned that they[br]could even meet each other

9:59:59.000,9:59:59.000
if they both sign a waiver,

9:59:59.000,9:59:59.000
almost like an open adoption.

9:59:59.000,9:59:59.000
And I was so excited. I thought[br]maybe I could write a letter

9:59:59.000,9:59:59.000
or maybe I could get a letter[br]and learn about what happened.

9:59:59.000,9:59:59.000
But I was disappointed to learn[br]that this process only exists

9:59:59.000,9:59:59.000
for people who donate for transplant.

9:59:59.000,9:59:59.000
So I was jealous:[br]I had transplant envy, I guess.

9:59:59.000,9:59:59.000
But over the years that followed,

9:59:59.000,9:59:59.000
I learned a lot more about donation,

9:59:59.000,9:59:59.000
and I even got a job in the field.

9:59:59.000,9:59:59.000
And I came up with an idea.

9:59:59.000,9:59:59.000
I wrote a letter that started out,

9:59:59.000,9:59:59.000
"Dear Researcher."

9:59:59.000,9:59:59.000
I explained who I was,

9:59:59.000,9:59:59.000
and I asked if they could tell me[br]why they requested infant retinas

9:59:59.000,9:59:59.000
in March of 2010,

9:59:59.000,9:59:59.000
and I asked if my family[br]could visit their lab.

9:59:59.000,9:59:59.000
I emailed it to the eye bank[br]that arranged the donation,

9:59:59.000,9:59:59.000
the Old Dominion Eye Foundation,

9:59:59.000,9:59:59.000
and asked if they could[br]send it to the right person.

9:59:59.000,9:59:59.000
They said that they had[br]never done this before,

9:59:59.000,9:59:59.000
and they couldn't guarantee a response,

9:59:59.000,9:59:59.000
but they wouldn't be an obstacle[br]and they would deliver it.

9:59:59.000,9:59:59.000
Two days later, I got a response

9:59:59.000,9:59:59.000
from Dr. Arupa Ganguly[br]of the University of Pennsylvania.

9:59:59.000,9:59:59.000
She thanked me for the donation,[br]and she explained that she is studying

9:59:59.000,9:59:59.000
retinoblastoma,

9:59:59.000,9:59:59.000
which is a deadly cancer of the retina[br]that affects children

9:59:59.000,9:59:59.000
under the age of five,

9:59:59.000,9:59:59.000
and she said that yes,[br]we were invited to visit her lab.

9:59:59.000,9:59:59.000
So next we talked on the phone,

9:59:59.000,9:59:59.000
and one of the first things[br]she said to me was that

9:59:59.000,9:59:59.000
she couldn't possibly imagine how we felt,

9:59:59.000,9:59:59.000
and that Thomas had given[br]the ultimate sacrifice,

9:59:59.000,9:59:59.000
and that she seemed[br]to feel indebted to us.

9:59:59.000,9:59:59.000
So I said, "Um,[br]nothing against your study,

9:59:59.000,9:59:59.000
but we didn't actually pick it.

9:59:59.000,9:59:59.000
We donated to the system,[br]and the system chose your study."

9:59:59.000,9:59:59.000
I said, "And second of all,[br]bad things happen to children

9:59:59.000,9:59:59.000
every day,

9:59:59.000,9:59:59.000
and if you didn't want these retinas,

9:59:59.000,9:59:59.000
they would probably[br]be buried in the ground right now.

9:59:59.000,9:59:59.000
So to be able to participate in your study

9:59:59.000,9:59:59.000
gives Thomas's life a new[br]layer of meaning.

9:59:59.000,9:59:59.000
So never feel guilty[br]about using this tissue."

9:59:59.000,9:59:59.000
Next she explained to me how rare it was.

9:59:59.000,9:59:59.000
She had placed a request for this tissue

9:59:59.000,9:59:59.000
six years earlier

9:59:59.000,9:59:59.000
with the National Disease[br]Research Interchange.

9:59:59.000,9:59:59.000
She got only one sample of tissue[br]that fit her criteria and it was Thomas's.

9:59:59.000,9:59:59.000
Next we arranged a date for me[br]to come visit the lab,

9:59:59.000,9:59:59.000
and we chose March 23, 2015,[br]which was the twins' fifth birthday.

9:59:59.000,9:59:59.000
After we hung up, I emailed her[br]some pictures of Thomas and Callum,

9:59:59.000,9:59:59.000
and a few weeks later we received[br]this t-shirt in the mail.

9:59:59.000,9:59:59.000
A few months later, Ross, Callum,[br]and I piled in the car

9:59:59.000,9:59:59.000
and we went for a road trip.

9:59:59.000,9:59:59.000
We met Arupa and her staff,

9:59:59.000,9:59:59.000
and Arupa said that when I told her[br]not to feel guilty that it was a relief,

9:59:59.000,9:59:59.000
and that she hadn't seen it[br]from our perspective.

9:59:59.000,9:59:59.000
She also explained that Thomas[br]had a secret code name.

9:59:59.000,9:59:59.000
The same way Henrietta Lacks[br]is called HeLa,

9:59:59.000,9:59:59.000
Thomas was called RES360.

9:59:59.000,9:59:59.000
RES means research,[br]and 360 means he was

9:59:59.000,9:59:59.000
the 360th specimen

9:59:59.000,9:59:59.000
over the course of about 10 years.

9:59:59.000,9:59:59.000
She also shared with us

9:59:59.000,9:59:59.000
a unique document,

9:59:59.000,9:59:59.000
and it was the shipping label

9:59:59.000,9:59:59.000
that sent his retinas[br]from DC to Philadelphia.

9:59:59.000,9:59:59.000
This shipping label is like[br]an heirloom to us now.

9:59:59.000,9:59:59.000
It's the same way that a military medal[br]or a wedding certificate might be.

9:59:59.000,9:59:59.000
Arupa also explained that she[br]is using Thomas's retina and his RNA

9:59:59.000,9:59:59.000
to try to inactivate the gene[br]that causes tumor formation,

9:59:59.000,9:59:59.000
and she even showed us some results[br]that were based on RES360.

9:59:59.000,9:59:59.000
Then she took us to the freezer

9:59:59.000,9:59:59.000
and she showed us the two samples[br]that she still has

9:59:59.000,9:59:59.000
that are still labeled RES360.

9:59:59.000,9:59:59.000
There's two little ones left.

9:59:59.000,9:59:59.000
She said she saved it

9:59:59.000,9:59:59.000
because she doesn't know[br]when she might get more.

9:59:59.000,9:59:59.000
After this we went to the conference room

9:59:59.000,9:59:59.000
and we relaxed and we had lunch together,

9:59:59.000,9:59:59.000
and the lab staff presented Callum[br]with a birthday gift.

9:59:59.000,9:59:59.000
It was a child's lab kit.

9:59:59.000,9:59:59.000
And they also offered him an internship.

9:59:59.000,9:59:59.000
(Laughter)

9:59:59.000,9:59:59.000
So in closing, I have two[br]simple messages today.

9:59:59.000,9:59:59.000
One is that most of us probably don't[br]think about donating to research.

9:59:59.000,9:59:59.000
I know I didn't.[br]I think I'm a normal person.

9:59:59.000,9:59:59.000
But I did it. It was a good experience,[br]and I recommend it,

9:59:59.000,9:59:59.000
and it brought my family a lot of peace.

9:59:59.000,9:59:59.000
And second is if you work[br]with human tissue

9:59:59.000,9:59:59.000
and you wonder about the donor[br]and you wonder about the family,

9:59:59.000,9:59:59.000
write them a letter.

9:59:59.000,9:59:59.000
Tell them you received it,[br]tell them what you're working on,

9:59:59.000,9:59:59.000
and invite them to visit your lab,

9:59:59.000,9:59:59.000
because that visit might be[br]even more gratifying for you

9:59:59.000,9:59:59.000
than it is for them.

9:59:59.000,9:59:59.000
And I'd also like to ask you a favor.

9:59:59.000,9:59:59.000
If you're ever successful in arranging[br]one of these visits,

9:59:59.000,9:59:59.000
please tell me about it.

9:59:59.000,9:59:59.000
The other part of my family story[br]is that we ended up visiting

9:59:59.000,9:59:59.000
all four facilities that received[br]Thomas's donations,

9:59:59.000,9:59:59.000
and we met amazing people

9:59:59.000,9:59:59.000
doing inspiring work.

9:59:59.000,9:59:59.000
The way I see it now is that

9:59:59.000,9:59:59.000
Thomas got into Harvard,

9:59:59.000,9:59:59.000
Duke, and Penn -- (Laughter) --

9:59:59.000,9:59:59.000
and he has a job at Sidonet,

9:59:59.000,9:59:59.000
and he has colleagues[br]and he has coworkers

9:59:59.000,9:59:59.000
who are in the top of their fields,

9:59:59.000,9:59:59.000
and they need him[br]in order to do their job.

9:59:59.000,9:59:59.000
And a life that once seemed[br]brief and insignificant

9:59:59.000,9:59:59.000
revealed itself

9:59:59.000,9:59:59.000
to be vital, everlasting, and relevant.

9:59:59.000,9:59:59.000
And I only hope that my life[br]can be as relevant.

9:59:59.000,9:59:59.000
Thank you.

9:59:59.000,9:59:59.000
(Applause)