I was three months pregnant with twins when my husband Ross and I went to my second sonogram.
Bila sam tri meseca trudna s blizancima kad smo moj suprug Ros i ja otišli na moj drugi ultrazvuk.
I was 35 years old at the time, and I knew that that meant we had a higher risk of having a child with a birth defect. So, Ross and I researched the standard birth defects, and we felt reasonably prepared.
Imala sam 35 godina tada, i znala sam da zbog toga postoji veći rizik da dobijemo dete sa urođenim manama. Ros i ja smo proučili standardne anomalije i mislili smo da smo prilično spremni.
Well, nothing would have prepared us for the bizarre diagnosis that we were about to face. The doctor explained that one of our twins, Thomas, had a fatal birth defect called anencephaly. This means that his brain was not formed correctly because part of his skull was missing. Babies with this diagnosis typically die in utero or within a few minutes, hours or days of being born. But the other twin, Callum, appeared to be healthy, as far as the doctor could tell, and these twins were identical, genetically identical.
Ništa nije moglo da nas pripremi za bizarnu dijagnozu s kojom ćemo se suočiti. Lekar nam je objasnio da jedan od blizanaca, Tomas, ima smrtonosnu anomaliju koja se zove anencefalija. To znači da mu mozak nije bio pravilno formiran jer mu je nedostajao deo lobanje. Bebe s ovom dijagnozom obično umiru u materici ili kroz nekoliko minuta, sati ili dana po rođenju. Međutim, drugi blizanac, Kalum, činio se zdrav, koliko je lekar mogao da kaže, a ovi blizanci su bili identični, genetski identični.
So after a lot of questions about how this could have possibly happened, a selective reduction was mentioned, and while this procedure was not impossible, it posed some unique risks for the healthy twin and for me, so we decided to carry the pregnancy to term. So there I was, three months pregnant, with two trimesters ahead of me, and I had to find a way to manage my blood pressure and my stress. And it felt like having a roommate point a loaded gun at you for six months. But I stared down the barrel of that gun for so long that I saw a light at the end of the tunnel. While there was nothing we could do to prevent the tragedy, I wanted to find a way for Thomas's brief life to have some kind of positive impact.
Posle mnogo pitanja o tome kako se to moglo desiti, pominjala se i selektivna redukcija, ali, iako ta procedura nije bila nemoguća, nosila je naročite rizike za zdravog blizanca i za mene, pa smo odlučili da iznesem trudnoću do kraja. I tako, tri meseca trudna, s dva tromesečja preda mnom, morala sam da nađem način da kontrolišem krvni pritisak i stres. To je bilo kao kad bi vaš cimer šest meseci držao pištolj uperen u vas. Toliko dugo sam gledala u cev tog pištolja da sam ugledala svetlost na kraju tunela. Iako ništa nismo mogli da učinimo kako bismo sprečili tragediju, želela sam da nađem način da Tomasov kratki život ostavi nekakav pozitivni trag.
So I asked my nurse about organ, eye and tissue donation. She connected with our local organ-procurement organization, the Washington Regional Transplant Community. WRTC explained to me that Thomas would probably be too small at birth to donate for transplant, and I was shocked: I didn't even know you could be rejected for that. But they said that he would be a good candidate to donate for research. This helped me see Thomas in a new light. As opposed to just a victim of a disease, I started to see him as a possible key to unlock a medical mystery.
Pitala sam medicinsku sestru za donaciju organa, očiju i tkiva. Spojila me s našom lokalnom organizacijom za transplantaciju organa, Vašingtonskom regionalnom zajednicom za transplantaciju. Tamo su mi objasnili da će Tomas verovatno biti suviše mali na rođenju da bio donor za transplantaciju, i bila sam šokirana: nisam ni znala da vas zbog toga mogu odbiti. Ipak, rekli su da bio dobar kandidat za doniranje u istraživačke svhe. Uspela sam da ga vidim u novom svetlu. Nije više bio samo žrtva bolesti, počela sam da ga posmatram kao rešenje za neku medicinsku misteriju.
On March 23, 2010, the twins were born, and they were both born alive. And just like the doctor said, Thomas was missing the top part of his skull, but he could nurse, drink from a bottle, cuddle and grab our fingers like a normal baby, and he slept in our arms. After six days, Thomas died in Ross's arms surrounded by our family.
Dana 23. marta 2010. godine, rođeni su blizanci i obojica su rođeni živi. Baš kako je lekar rekao, Tomasu je nedostajao gornji deo lobanje, ali je mogao da sisa, pije iz flašice, mazi se i hvata za naše prste kao normalna beba, i spavao je na našim rukama. Nakon šest dana, Tomas je umro u Rosovim rukama, okružen našom porodicom.
We called WRTC, who sent a van to our home 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, and Thomas's donations would be going to four different places. His cord blood would go to Duke University. His liver would go to a cell-therapy company called Cytonet in Durham. His corneas would go to Schepens Eye Research Institute, which is part of Harvard Medical School, and his retinas would go to the University of Pennsylvania.
Pozvali smo Zajednicu za transplantaciju, poslali su kombi našoj kući i odneli ga u Nacionalni dečji medicinski centar. Posle nekoliko sati, javili su nam da je uzimanje bilo uspešno i da će Tomasove donacije otići na četiri različita mesta. Umbilikalna krv odlazi na Univerzitet Djuk. Jetra odlazi u Daram, u kompaniju Sajtonet koja se bavi ćelijskom terapijom. Njegove rožnjače odlaze u Institut za istraživanje očiju Skepens, koji je deo Medicinskog fakulteta Harvard, a njegove mrežnjače odlaze na Pensilvanijski univerzitet.
A few days later, we had a funeral with our immediate family, including baby Callum, and we basically closed this chapter in our lives. But I did find myself wondering, what's happening now? What are the researchers learning? And was it even worthwhile to donate?
Nakon nekoliko dana, sahranili smo ga u krugu najbliže porodice, uključujući i bebu Kaluma, i u suštini smo zatvorili ovo poglavlje u našim životima, ali sam se pitala šta se sada događa. Šta istraživači saznaju? Da li je uopšte vredelo donirati?
WRTC invited Ross and I to a grief retreat, and we met about 15 other grieving families who had donated their loved one's organs for transplant. Some of them had even received letters from the people who received their loved one's organs, saying thank you. I learned that they could even meet each other if they'd both sign a waiver, almost like an open adoption. And I was so excited, I thought maybe I could write a letter or I could get a letter and learn about what happened. But I was disappointed to learn that this process only exists for people who donate for transplant. So I was jealous. I had transplant envy, I guess.
Iz Zajednice su pozvali Rosa i mene na radionicu za suočavanje s tugom, gde smo upoznali nekih 15 drugih porodica u žalosti koje su donirale organe svojih najbližih. Neki od njih su čak dobili pisma od ljudi koji su primili organe njihovih najbližih, u kojima se zahvaljuju. Saznala sam da su čak mogli da se sretnu ako obe strane potpišu izjavu o odricanju, nešto kao otvoreno usvajanje. Bila sam uzbuđena, pomislila sam da možda napišem pismo ili da dobijem pismo i saznam šta se desilo. Razočarala sam se kad sam čula da je ovo dostupno samo onima koji doniraju za transplantaciju. Bila sam ljubomorna. Zavidela sam na transplantaciji, izgleda.
(Laughter)
(Smeh)
But over the years that followed, I learned a lot more about donation, and I even got a job in the field.
Međutim, tokom godina koje su usledile, mnogo sam dodatno naučila o donaciji i čak sam dobila i posao u toj oblasti.
And I came up with an idea. I wrote a letter that started out, "Dear Researcher." I explained who I was, and I asked if they could tell me why they requested infant retinas in March of 2010, and I asked if my family could visit their lab. I emailed it to the eye bank that arranged the donation, the Old Dominion Eye Foundation, and asked if they could send it to the right person. They said that they had never done this before, and they couldn't guarantee a response, but they wouldn't be an obstacle, and they would deliver it.
Došla sam na jednu ideju. Napisala sam pismo koje je otpočinjalo sa „Poštovani istraživaču“ Objasnila sam ko sam i zamolila ih da mi kažu zašto su im bile potrebne dečje mrežnjače marta 2010. godine i zatražila posetu moje porodice laboratoriji. Poslala sam imejl banci očiju koja je ugovorila donaciju, Očnoj fondaciji Old Dominion, i zamolila ih da ga pošalju pravoj osobi. Rekli su mi da to nikad pre nisu radili i da ne mogu da garantuju odgovor, ali da oni neće biti prepreka i da će ga proslediti.
Two days later, I got a response from Dr. Arupa Ganguly of the University of Pennsylvania. She thanked me for the donation, and she explained that she is studying retinoblastoma, which is a deadly cancer of the retina that affects children under the age of five, and she said that yes, we were invited to visit her lab.
Dva dana kasnije, dobila sam odgovor od Dr Arupe Ganguli sa Univerziteta u Pensilvaniji. Zahvalila mi se na donaciji, i objasnila da proučava retinoblastom, smrtonosni rak mrežnjače koji pogađa decu mlađu od pet godina, rekla je da smo pozvani da posetimo njenu laboratoriju.
So next we talked on the phone, and one of the first things she said to me was that she couldn't possibly imagine how we felt, and that Thomas had given the ultimate sacrifice, and that she seemed to feel indebted to us. So I said, "Nothing against your study, but we didn't actually pick it. We donated to the system, and the system chose your study. I said, "And second of all, bad things happen to children every day, and if you didn't want these retinas, they would probably be buried in the ground right now. So to be able to participate in your study gives Thomas's life a new layer of meaning. So, never feel guilty about using this tissue."
Posle smo razgovarale telefonom i jedna od prvih stvari koje mi je rekla jeste da ne može ni da zamisli kako se osećamo, da je Tomas dao najveću moguću žrtvu i da se oseća dužnom prema nama. Rekla sam: „Nemam ništa protiv vašeg istraživanja, ali nismo ga mi izabrali. Donirali smo sistemu i sistem je izabrao vaše istraživanje.“ Rekla sam: „Kao drugo, deci se svakodnevno dešavaju loše stvari, i da vam nisu trebale ove mrežnjače, one bi sad verovatno bile zakopane u zemlji. Mogućnost da učestvujemo u vašem istraživanju daje Tomasovom životu novo značenje. Zato nikad nemojte osećati krivicu što koristite ovo tkivo.
Next, she explained to me how rare it was. She had placed a request for this tissue six years earlier with the National Disease Research Interchange. She got only one sample of tissue that fit her criteria, and it was Thomas's.
Onda mi je objasnila koliko je to retko. Šest godina pre toga je podnela zahtev za tkivo Nacionalnoj razmeni za istraživanja bolesti. Dobila je samo jedan uzorak tkiva koje ispunjava njene zahteve, a to je bilo Tomasovo.
Next, we arranged a date for me to come visit the lab, and we chose March 23, 2015, which was the twins' fifth birthday. After we hung up, I emailed her some pictures of Thomas and Callum, and a few weeks later, we received this T-shirt in the mail.
Onda smo ugovorile datum posete laboratoriji i izabrale smo 23. mart 2015. godine, što je bio peti rođendan blizanaca. Kad smo završile razgovor, poslala sam joj Tomasove i Kalumove slike, i posle nekoliko nedelja, ova majica nam je stigla poštom.
A few months later, Ross, Callum and I piled in the car and we went for a road trip. We met Arupa and her staff, and Arupa said that when I told her not to feel guilty, that it was a relief, and that she hadn't seen it from our perspective. She also explained that Thomas had a secret code name. The same way Henrietta Lacks is called HeLa, Thomas was called RES 360. RES means research, and 360 means he was the 360th specimen over the course of about 10 years.
Posle nekoliko meseci, Ros, Kalum i ja smo seli u kola i otišli na put. Upoznali smo Arupu i njene saradnike. Arupa je rekla da je osetila olakšanje kad sam joj poručila da se ne oseća krivom, i da ranije to nije posmatrala iz našeg ugla. Takođe je objasnila da Tomas ima tajno šifrovano ime. Kao što se Henrijeta Laks zove HeLa, Tomasa su zvali RES 360. RES označava istraživanje, a 360 znači da je bio 360. uzorak u periodu od otprilike 10 godina.
She also shared with us a unique document, and it was the shipping label that sent his retinas from DC to Philadelphia. This shipping label is like an heirloom to us now. It's the same way that a military medal or a wedding certificate might be.
Takođe nam je pokazala jedinstven dokument, a to je bila oznaka isporuke u kojoj su njegove mrežnjače poslate iz Vašingtona u Filadelfiju. Ova oznaka isporuke nam je sada poput nasledstva. Slično kao što to mogu biti vojnička medalja ili venčani list.
Arupa also explained that she is using Thomas's retina and his RNA to try to inactivate the gene that causes tumor formation, and she even showed us some results that were based on RES 360. Then she took us to the freezer and she showed us the two samples that she still has that are still labeled RES 360. There's two little ones left. She said she saved it because she doesn't know when she might get more. After this, we went to the conference room and we relaxed and we had lunch together, and the lab staff presented Callum with a birthday gift. It was a child's lab kit. And they also offered him an internship.
Arupa je takođe objasnila da koristi Tomasovu mrežnjaču i njegovu RNK kako bi pokušala da deaktivira gen koji uzrokuje formiranje tumora, i čak nam je pokazala neke rezultate zasnovane na RES 360. Onda nas je odvela do zamrzivača i pokazala nam dva uzorka koja još uvek ima, a koji još uvek nose oznaku RES 360. Ostala su još dva malena uzorka. Rekla je da ih je sačuvala jer ne zna kad bi mogla dobiti još. Onda smo otišli u salu za konferencije, opustili smo se i ručali zajedno, a osoblje laboratorije je Kalumu dalo rođendanski poklon. Dečju laboratorijsku opremu. Takođe su mu ponudili stažiranje.
(Laughter)
(Smeh)
So in closing, I have two simple messages today. One is that most of us probably don't think about donating to research. I know I didn't. I think I'm a normal person. But I did it. It was a good experience, and I recommend it, and it brought my family a lot of peace. And second is if you work with human tissue and you wonder about the donor and about the family, write them a letter. Tell them you received it, tell them what you're working on, and invite them to visit your lab, because that visit may be even more gratifying for you than it is for them. And I'd also like to ask you a favor. If you're ever successful in arranging one of these visits, please tell me about it.
Da zaključim, danas imam dve jednostavne poruke. Jedna je da većina nas verovatno ne razmišlja o doniranju za istraživanja. Znam da ja nisam. Mislim da sam normalna osoba. Ipak, učinila sam to. Bilo je to dobro iskustvo i preporučujem ga. To je mojoj porodici donelo mir. A druga je da, ako radite s ljudskim tkivom i razmišljate o donoru i porodici, napišite im pismo. Recite im da ste ga primili, recite im na čemu radite i pozovite ih u posetu, jer ta poseta može biti veća nagrada vama nego što je njima. Takođe bih želela da zatražim uslugu. Ako budete uspešni u ugovaranju ovakvih poseta, molim vas, obavestite me.
The other part of my family's story is that we ended up visiting all four facilities that received Thomas's donations. And we met amazing people doing inspiring work. The way I see it now is that Thomas got into Harvard, Duke and Penn --
Druga strana moje porodične priče jeste to da smo na kraju posetili sve četiri ustanove koje su primile Tomasove donacije. Upoznali smo divne ljude koji se bave inspirativnim poslom. Način na koji sada to posmatram jeste da je Tomas ušao na Harvard, Djuk i Pen.
(Laughter)
(Smeh)
And he has a job at Cytonet, and he has colleagues and he has coworkers who are in the top of their fields. And they need him in order to do their job. And a life that once seemed brief and insignificant revealed itself to be vital, everlasting and relevant. And I only hope that my life can be as relevant.
Dobio je posao u Sajtonetu, ima kolege i saradnike koji su vrhunski stručnjaci i on im je potreban da bi uradili svoj posao. Život koji se nekad činio kratak i beznačajan pokazao se kao suštinski važan, večan i značajan. Nadam se da moj život može postati isto toliko važan.
Thank you.
Hvala vam.
(Applause)
(Aplauz)