How my son's short life made a lasting difference | Sarah Gray

Prevodilac: Jasmina Francuski Lektor: Ivana Krivokuća

I was three months pregnant with twins

Bila sam tri meseca trudna s blizancima

when my husband Ross and I went to my second sonogram.

kad smo moj suprug Ros i ja otišli na moj drugi ultrazvuk.

I was 35 years old at the time,

Imala sam 35 godina tada,

and I knew that that meant we had a higher risk

i znala sam da zbog toga postoji veći rizik

of having a child with a birth defect.

da dobijemo dete sa urođenim manama.

So, Ross and I researched the standard birth defects,

Ros i ja smo proučili standardne anomalije

and we felt reasonably prepared.

i mislili smo da smo prilično spremni.

Well, nothing would have prepared us

Ništa nije moglo da nas pripremi

for the bizarre diagnosis that we were about to face.

za bizarnu dijagnozu s kojom ćemo se suočiti.

The doctor explained that one of our twins, Thomas,

Lekar nam je objasnio da jedan od blizanaca, Tomas,

had a fatal birth defect called anencephaly.

ima smrtonosnu anomaliju koja se zove anencefalija.

This means that his brain was not formed correctly

To znači da mu mozak nije bio pravilno formiran

because part of his skull was missing.

jer mu je nedostajao deo lobanje.

Babies with this diagnosis typically die in utero

Bebe s ovom dijagnozom obično umiru u materici

or within a few minutes, hours or days of being born.

ili kroz nekoliko minuta, sati ili dana po rođenju.

But the other twin, Callum,

Međutim, drugi blizanac, Kalum,

appeared to be healthy, as far as the doctor could tell,

činio se zdrav, koliko je lekar mogao da kaže,

and these twins were identical,

a ovi blizanci su bili identični,

genetically identical.

genetski identični.

So after a lot of questions about how this could have possibly happened,

Posle mnogo pitanja o tome kako se to moglo desiti,

a selective reduction was mentioned,

pominjala se i selektivna redukcija,

and while this procedure was not impossible,

ali, iako ta procedura nije bila nemoguća,

it posed some unique risks for the healthy twin and for me,

nosila je naročite rizike za zdravog blizanca i za mene,

so we decided to carry the pregnancy to term.

pa smo odlučili da iznesem trudnoću do kraja.

So there I was, three months pregnant, with two trimesters ahead of me,

I tako, tri meseca trudna, s dva tromesečja preda mnom,

and I had to find a way to manage my blood pressure and my stress.

morala sam da nađem način da kontrolišem krvni pritisak i stres.

And it felt like having a roommate point a loaded gun at you for six months.

To je bilo kao kad bi vaš cimer šest meseci držao pištolj uperen u vas.

But I stared down the barrel of that gun for so long

Toliko dugo sam gledala u cev tog pištolja

that I saw a light at the end of the tunnel.

da sam ugledala svetlost na kraju tunela.

While there was nothing we could do to prevent the tragedy,

Iako ništa nismo mogli da učinimo kako bismo sprečili tragediju,

I wanted to find a way for Thomas's brief life

želela sam da nađem način da Tomasov kratki život

to have some kind of positive impact.

ostavi nekakav pozitivni trag.

So I asked my nurse about organ, eye and tissue donation.

Pitala sam medicinsku sestru za donaciju organa, očiju i tkiva.

She connected with our local organ-procurement organization,

Spojila me s našom lokalnom organizacijom za transplantaciju organa,

the Washington Regional Transplant Community.

Vašingtonskom regionalnom zajednicom za transplantaciju.

WRTC explained to me

Tamo su mi objasnili

that Thomas would probably be too small at birth to donate for transplant,

da će Tomas verovatno biti suviše mali na rođenju

da bio donor za transplantaciju,

and I was shocked:

i bila sam šokirana:

I didn't even know you could be rejected for that.

nisam ni znala da vas zbog toga mogu odbiti.

But they said that he would be a good candidate to donate for research.

Ipak, rekli su da bio dobar kandidat za doniranje u istraživačke svhe.

This helped me see Thomas in a new light.

Uspela sam da ga vidim u novom svetlu.

As opposed to just a victim of a disease,

Nije više bio samo žrtva bolesti,

I started to see him as a possible key to unlock a medical mystery.

počela sam da ga posmatram kao rešenje za neku medicinsku misteriju.

On March 23, 2010,

Dana 23. marta 2010. godine,

the twins were born, and they were both born alive.

rođeni su blizanci i obojica su rođeni živi.

And just like the doctor said,

Baš kako je lekar rekao,

Thomas was missing the top part of his skull,

Tomasu je nedostajao gornji deo lobanje,

but he could nurse,

ali je mogao da sisa,

drink from a bottle,

pije iz flašice,

cuddle and grab our fingers like a normal baby,

mazi se i hvata za naše prste kao normalna beba,

and he slept in our arms.

i spavao je na našim rukama.

After six days, Thomas died in Ross's arms

Nakon šest dana, Tomas je umro u Rosovim rukama,

surrounded by our family.

okružen našom porodicom.

We called WRTC, who sent a van to our home

Pozvali smo Zajednicu za transplantaciju,

poslali su kombi našoj kući i odneli ga u Nacionalni dečji medicinski centar.

and brought him to Children's National Medical Center.

A few hours later, we got a call to say that the recovery was a success,

Posle nekoliko sati, javili su nam da je uzimanje bilo uspešno

and Thomas's donations would be going to four different places.

i da će Tomasove donacije otići na četiri različita mesta.

His cord blood would go to Duke University.

Umbilikalna krv odlazi na Univerzitet Djuk.

His liver would go to a cell-therapy company called Cytonet in Durham.

Jetra odlazi u Daram, u kompaniju Sajtonet koja se bavi ćelijskom terapijom.

His corneas would go to Schepens Eye Research Institute,

Njegove rožnjače odlaze u Institut za istraživanje očiju Skepens,

which is part of Harvard Medical School,

koji je deo Medicinskog fakulteta Harvard,

and his retinas would go to the University of Pennsylvania.

a njegove mrežnjače odlaze na Pensilvanijski univerzitet.

A few days later, we had a funeral with our immediate family,

Nakon nekoliko dana, sahranili smo ga u krugu najbliže porodice,

including baby Callum,

uključujući i bebu Kaluma,

and we basically closed this chapter in our lives.

i u suštini smo zatvorili ovo poglavlje u našim životima,

But I did find myself wondering, what's happening now?

ali sam se pitala šta se sada događa.

What are the researchers learning?

Šta istraživači saznaju?

And was it even worthwhile to donate?

Da li je uopšte vredelo donirati?

WRTC invited Ross and I to a grief retreat,

Iz Zajednice su pozvali Rosa i mene na radionicu za suočavanje s tugom,

and we met about 15 other grieving families

gde smo upoznali nekih 15 drugih porodica u žalosti

who had donated their loved one's organs for transplant.

koje su donirale organe svojih najbližih.

Some of them had even received letters

Neki od njih su čak dobili pisma

from the people who received their loved one's organs,

od ljudi koji su primili organe njihovih najbližih,

saying thank you.

u kojima se zahvaljuju.

Saznala sam da su čak mogli da se sretnu ako obe strane potpišu izjavu o odricanju,

I learned that they could even meet each other

if they'd both sign a waiver,

almost like an open adoption.

nešto kao otvoreno usvajanje.

And I was so excited, I thought maybe I could write a letter

Bila sam uzbuđena, pomislila sam da možda napišem pismo

or I could get a letter and learn about what happened.

ili da dobijem pismo i saznam šta se desilo.

Razočarala sam se kad sam čula

But I was disappointed to learn

that this process only exists for people who donate for transplant.

da je ovo dostupno samo onima koji doniraju za transplantaciju.

So I was jealous. I had transplant envy, I guess.

Bila sam ljubomorna. Zavidela sam na transplantaciji, izgleda.

(Laughter)

(Smeh)

But over the years that followed,

Međutim, tokom godina koje su usledile,

I learned a lot more about donation,

mnogo sam dodatno naučila o donaciji

and I even got a job in the field.

i čak sam dobila i posao u toj oblasti.

And I came up with an idea.

Došla sam na jednu ideju.

I wrote a letter that started out,

Napisala sam pismo koje je otpočinjalo sa „Poštovani istraživaču“

"Dear Researcher."

I explained who I was,

Objasnila sam ko sam

and I asked if they could tell me why they requested infant retinas

i zamolila ih da mi kažu zašto su im bile potrebne dečje mrežnjače

in March of 2010,

marta 2010. godine

and I asked if my family could visit their lab.

i zatražila posetu moje porodice laboratoriji.

I emailed it to the eye bank that arranged the donation,

Poslala sam imejl banci očiju koja je ugovorila donaciju,

the Old Dominion Eye Foundation,

Očnoj fondaciji Old Dominion,

and asked if they could send it to the right person.

i zamolila ih da ga pošalju pravoj osobi.

They said that they had never done this before,

Rekli su mi da to nikad pre nisu radili

and they couldn't guarantee a response,

i da ne mogu da garantuju odgovor,

but they wouldn't be an obstacle, and they would deliver it.

ali da oni neće biti prepreka i da će ga proslediti.

Two days later, I got a response

Dva dana kasnije, dobila sam odgovor

from Dr. Arupa Ganguly of the University of Pennsylvania.

od Dr Arupe Ganguli sa Univerziteta u Pensilvaniji.

She thanked me for the donation,

Zahvalila mi se na donaciji,

and she explained that she is studying retinoblastoma,

i objasnila da proučava retinoblastom,

which is a deadly cancer of the retina

smrtonosni rak mrežnjače

that affects children under the age of five,

koji pogađa decu mlađu od pet godina,

and she said that yes, we were invited to visit her lab.

rekla je da smo pozvani da posetimo njenu laboratoriju.

So next we talked on the phone,

Posle smo razgovarale telefonom

and one of the first things she said to me

i jedna od prvih stvari koje mi je rekla

was that she couldn't possibly imagine how we felt,

jeste da ne može ni da zamisli kako se osećamo,

and that Thomas had given the ultimate sacrifice,

da je Tomas dao najveću moguću žrtvu

and that she seemed to feel indebted to us.

i da se oseća dužnom prema nama.

So I said, "Nothing against your study,

Rekla sam: „Nemam ništa protiv vašeg istraživanja,

but we didn't actually pick it.

ali nismo ga mi izabrali.

We donated to the system, and the system chose your study.

Donirali smo sistemu i sistem je izabrao vaše istraživanje.“

I said, "And second of all, bad things happen to children every day,

Rekla sam: „Kao drugo, deci se svakodnevno dešavaju loše stvari,

and if you didn't want these retinas,

i da vam nisu trebale ove mrežnjače,

they would probably be buried in the ground right now.

one bi sad verovatno bile zakopane u zemlji.

So to be able to participate in your study

Mogućnost da učestvujemo u vašem istraživanju

gives Thomas's life a new layer of meaning.

daje Tomasovom životu novo značenje.

So, never feel guilty about using this tissue."

Zato nikad nemojte osećati krivicu što koristite ovo tkivo.

Next, she explained to me how rare it was.

Onda mi je objasnila koliko je to retko.

She had placed a request for this tissue six years earlier

Šest godina pre toga je podnela zahtev za tkivo

with the National Disease Research Interchange.

Nacionalnoj razmeni za istraživanja bolesti.

She got only one sample of tissue that fit her criteria,

Dobila je samo jedan uzorak tkiva koje ispunjava njene zahteve,

and it was Thomas's.

a to je bilo Tomasovo.

Next, we arranged a date for me to come visit the lab,

Onda smo ugovorile datum posete laboratoriji

and we chose March 23, 2015, which was the twins' fifth birthday.

i izabrale smo 23. mart 2015. godine, što je bio peti rođendan blizanaca.

After we hung up, I emailed her some pictures of Thomas and Callum,

Kad smo završile razgovor, poslala sam joj Tomasove i Kalumove slike,

and a few weeks later, we received this T-shirt in the mail.

i posle nekoliko nedelja, ova majica nam je stigla poštom.

A few months later, Ross, Callum and I piled in the car

Posle nekoliko meseci, Ros, Kalum i ja smo seli u kola

and we went for a road trip.

i otišli na put.

We met Arupa and her staff,

Upoznali smo Arupu i njene saradnike.

and Arupa said that when I told her not to feel guilty, that it was a relief,

Arupa je rekla da je osetila olakšanje

kad sam joj poručila da se ne oseća krivom,

and that she hadn't seen it from our perspective.

i da ranije to nije posmatrala iz našeg ugla.

She also explained that Thomas had a secret code name.

Takođe je objasnila da Tomas ima tajno šifrovano ime.

The same way Henrietta Lacks is called HeLa,

Kao što se Henrijeta Laks zove HeLa,

Thomas was called RES 360.

Tomasa su zvali RES 360.

RES means research,

RES označava istraživanje,

and 360 means he was the 360th specimen

a 360 znači da je bio 360. uzorak

over the course of about 10 years.

u periodu od otprilike 10 godina.

She also shared with us a unique document,

Takođe nam je pokazala jedinstven dokument,

and it was the shipping label

a to je bila oznaka isporuke

that sent his retinas from DC to Philadelphia.

u kojoj su njegove mrežnjače poslate iz Vašingtona u Filadelfiju.

This shipping label is like an heirloom to us now.

Ova oznaka isporuke nam je sada poput nasledstva.

It's the same way that a military medal or a wedding certificate might be.

Slično kao što to mogu biti vojnička medalja ili venčani list.

Arupa also explained that she is using Thomas's retina and his RNA

Arupa je takođe objasnila da koristi Tomasovu mrežnjaču i njegovu RNK

to try to inactivate the gene that causes tumor formation,

kako bi pokušala da deaktivira gen koji uzrokuje formiranje tumora,

and she even showed us some results that were based on RES 360.

i čak nam je pokazala neke rezultate zasnovane na RES 360.

Then she took us to the freezer

Onda nas je odvela do zamrzivača

and she showed us the two samples that she still has

i pokazala nam dva uzorka koja još uvek ima,

that are still labeled RES 360.

a koji još uvek nose oznaku RES 360.

There's two little ones left.

Ostala su još dva malena uzorka.

She said she saved it

Rekla je da ih je sačuvala

because she doesn't know when she might get more.

jer ne zna kad bi mogla dobiti još.

After this, we went to the conference room

Onda smo otišli u salu za konferencije,

and we relaxed and we had lunch together,

opustili smo se i ručali zajedno,

and the lab staff presented Callum with a birthday gift.

a osoblje laboratorije je Kalumu dalo rođendanski poklon.

It was a child's lab kit.

Dečju laboratorijsku opremu.

And they also offered him an internship.

Takođe su mu ponudili stažiranje.

(Laughter)

(Smeh)

So in closing, I have two simple messages today.

Da zaključim, danas imam dve jednostavne poruke.

One is that most of us probably don't think about donating to research.

Jedna je da većina nas verovatno ne razmišlja o doniranju za istraživanja.

I know I didn't. I think I'm a normal person.

Znam da ja nisam. Mislim da sam normalna osoba.

But I did it.

Ipak, učinila sam to.

It was a good experience, and I recommend it,

Bilo je to dobro iskustvo i preporučujem ga.

and it brought my family a lot of peace.

To je mojoj porodici donelo mir.

And second is if you work with human tissue

A druga je da, ako radite s ljudskim tkivom

and you wonder about the donor and about the family,

i razmišljate o donoru i porodici,

write them a letter.

napišite im pismo.

Tell them you received it, tell them what you're working on,

Recite im da ste ga primili, recite im na čemu radite

and invite them to visit your lab,

i pozovite ih u posetu,

jer ta poseta može biti veća nagrada vama

because that visit may be even more gratifying for you

than it is for them.

nego što je njima.

And I'd also like to ask you a favor.

Takođe bih želela da zatražim uslugu.

If you're ever successful in arranging one of these visits,

Ako budete uspešni u ugovaranju ovakvih poseta,

please tell me about it.

molim vas, obavestite me.

Druga strana moje porodične priče

The other part of my family's story

is that we ended up visiting all four facilities

jeste to da smo na kraju posetili sve četiri ustanove

that received Thomas's donations.

koje su primile Tomasove donacije.

And we met amazing people doing inspiring work.

Upoznali smo divne ljude koji se bave inspirativnim poslom.

The way I see it now is that Thomas got into Harvard,

Način na koji sada to posmatram jeste da je Tomas ušao na Harvard,

Duke and Penn --

Djuk i Pen.

(Laughter)

(Smeh)

And he has a job at Cytonet,

Dobio je posao u Sajtonetu,

and he has colleagues and he has coworkers

ima kolege i saradnike

who are in the top of their fields.

koji su vrhunski stručnjaci

And they need him in order to do their job.

i on im je potreban da bi uradili svoj posao.

And a life that once seemed brief and insignificant

Život koji se nekad činio kratak i beznačajan

revealed itself to be vital, everlasting and relevant.

pokazao se kao suštinski važan, večan i značajan.

And I only hope that my life can be as relevant.

Nadam se da moj život može postati isto toliko važan.

Thank you.

Hvala vam.

(Applause)

(Aplauz)