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

Translator: Heli Paudel Reviewer: Deepak Basyal

I was three months pregnant with twins

मेरो गर्भमा ३ महिने जुम्ल्याहा बच्चाहरु थिए,

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

जतिखेर म र मेरो श्रीमान रस दोश्रो सोनोग्राम गर्न गएका थियौं ।

I was 35 years old at the time,

तेतिखेर म ३५ बर्षकी थिएँ ,

and I knew that that meant we had a higher risk

यसको अर्थ हामीलाई थाहा थियो -

of having a child with a birth defect.

जन्म दोष भएको बच्चा जन्मिने खतरा छ ।

So, Ross and I researched the standard birth defects,

रोस र मैलें, सम्भावित जन्म दोषहरुको बारेमा अध्ययन गरेर

and we felt reasonably prepared.

एक किसिमको तयारी अवस्थामा बस्यौं ।

Well, nothing would have prepared us

तर हामीले भोग्न गइरहेको

for the bizarre diagnosis that we were about to face.

बिकराल समस्याको, कसैसंग केहि तयारी थिएन ।

The doctor explained that one of our twins, Thomas,

डाक्टरले भने - जुम्ल्याहा मध्ये

थमसमा Anencephaly भन्ने जन्म दोष छ ।

had a fatal birth defect called anencephaly.

This means that his brain was not formed correctly

भन्नाले, उसको मस्तिस्क बिकशित थिएन

because part of his skull was missing.

कारण-उसको खप्परको एक टुक्रा बनेकै थिएन ।

Babies with this diagnosis typically die in utero

यस्ता बच्चाहरुको गर्भमै वा,

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

जन्मेको केहि मिनेट, घण्टा वा केहि दिनमा मृत्यु हुन्छ ।

But the other twin, Callum,

जुम्ल्याहामध्ये अर्को क्यालम भने

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

डाक्टरले देखेसम्म स्वस्थ नै थियो,

and these twins were identical,

यी जुम्ल्याहरु उस्तै थिए,

genetically identical.

आनुवंसिकरुपमा समान थिए ।

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

अब अगाडी के गर्ने भन्ने बिषयमा लामो छलफल पछि,

a selective reduction was mentioned,

यौटा उपाय निक्सियो

and while this procedure was not impossible,

यो उपाय असंभव पनि थिएन,

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

तर यसले स्वस्थ बच्चा र मेरो स्वास्थमा खतरा हुन सक्थ्यो

so we decided to carry the pregnancy to term.

तेसैले हामीले गर्भलाइ पूर्णता दिने निर्णय गर्यौं

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

तिन महिने गर्भवती, ६ महिना गर्भ अवधि बाकि,

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

तनाब र ब्लड प्रेसर कसरी नियन्त्रण गर्ने, गाह्रो थियो ।

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

अबको ६ महिना मेरो जीवन कन्चटमा बन्दुक तेर्स्याए जस्तै हुन गैरहेको थियो ।

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

मैंले त्यो बन्दुकको नालीलाई लामो समयसम्म घुरेर हेरीरहंदा,

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

अर्को भागमा आशाको किरण देखेजस्तो लाग्यो

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

सम्भावित दुर्घटना रोक्न सक्ने हाम्रो सामर्थ्य त थिएन,

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

तैपनि थमसको छोटो जिन्दगीको कसरी

to have some kind of positive impact.

सकारात्मक प्रभाब बनाउन सकिएला, म सोच्न थालें ।

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

मैले नर्सलाइ आँखा, टिस्यु तथा अन्य अंगदानको बारेमा सोधें

She connected with our local organ-procurement organization,

उनले नजिकको - वाशिंगटन क्षेत्रीय अंग प्रत्यारोपण समूह

the Washington Regional Transplant Community.

(WRTC) संग सम्पर्क गराईदिइन l

WRTC explained to me

WRTC ले मलाई भन्यो -

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

नवजात शिशुको अंग सानो हुने हुँदा प्रत्यारोपण गर्न मिल्दैन ।

and I was shocked:

म चकित परें ।

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

अङ्गदानपनि अस्वीकृत हुनसक्छ भन्ने मलाई थाहा थिएन

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

उनीहरुले एउटा उपाय सुझाए - रिसर्चकोलागि पनिअंगदान गर्न सकिन्छ ।

This helped me see Thomas in a new light.

यो उपायले थमसलाइ नया प्रकाश दियो ।

As opposed to just a victim of a disease,

केवल रोगको सिकार बन्नुको सट्टा, चिकित्सा रहस्य पत्तालगाउन सक्ने

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

एउटा अवसर मैंले देखें ।

On March 23, 2010,

मार्च २३, २०१० मा

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

दुवै जुल्याहाहरु जीबितै जन्मे ।

And just like the doctor said,

डाक्टरले भनेजस्तै

Thomas was missing the top part of his skull,

थमसको खप्परको माथिल्लो भाग थिएन ,

but he could nurse,

तैपनि उ अरु साधारण बच्चा जस्तै,

drink from a bottle,

आमाको, सिसिको दुध चुस्न,

cuddle and grab our fingers like a normal baby,

चल्न, हाम्रो औंला समाउन तथा

and he slept in our arms.

हाम्रो अंगालोमा निधाउन सक्थ्यो ।

After six days, Thomas died in Ross's arms

६ दिन पछि, हाम्रै माझमा, रोसको अंगालोमा

surrounded by our family.

थमसले अन्तिम स्वास लियो ।

We called WRTC, who sent a van to our home

हामीले WRTC लाइ फोन गर्यौं, उनीहरुले हाम्रो घरमा गाडी पठाए

and brought him to Children's National Medical Center.

उसलाई रास्ट्रिय बाल उपचार केन्द्रमा लगियो

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

केहि घण्टापछि, अंग निकाल्न सफलता मिलेको खबर आयो

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

थमसको अंग बिभिन्न ४ ठाउंमा पठाइने भयो ।

His cord blood would go to Duke University.

कर्ड ब्लड - डियुक यूनिवर्सिटी,

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

कलेजो - सेल थेरापी कम्पनि (Cytonet in Durham),

His corneas would go to Schepens Eye Research Institute,

उसको कर्निया - Schepens Eye Research Institute

which is part of Harvard Medical School,

(हार्वर्ड मेडिकल यूनिवर्सिटीको भाग)

and his retinas would go to the University of Pennsylvania.

र रेटिना - यूनिवर्सिटी अफ पेन्सेलभेनिया पठाइयो ।

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

केहि दिन पछि, हामीले क्यालमसमेत भएर

including baby Callum,

थमसको मृत्यु संस्कार गर्यौं,

and we basically closed this chapter in our lives.

र बिस्तारै यो घटना बिर्सिदै गयौं ।

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

मेरो मनमा बारम्बार प्रश्न उठी रह्यो, अहिले के भैरहेको होला ?

What are the researchers learning?

रिसर्चबाट के थाहा भयो होला ?

And was it even worthwhile to donate?

अंगदान गर्नुको कुनै अर्थ रह्यो कि रहेन होला ?

WRTC invited Ross and I to a grief retreat,

WRTC ले रोस र मलाई एउटा शोक सभामा बोलायो, जहाँ,

and we met about 15 other grieving families

हामी जस्तै अन्य १५ दुखि परिवार थिए,

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

जसले आफ्नो प्रिय मान्छेको अंगदान गरेका थिए ।

Some of them had even received letters

ती मध्ये कतिले अंगदान प्राप्त गर्ने

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

परिवारले पठाएका धन्यबाद पत्र समेत

saying thank you.

प्राप्त गरेका रहेछन ।

I learned that they could even meet each other

मैंले के पनि थाहा पाएँ भने, अंग लिने दिनेको

if they'd both sign a waiver,

परिवारले आपसी समझदारीमा

almost like an open adoption.

भेटघाट समेत गर्दा रहेछन ।

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

मलाई पनि, कसैलाई धन्यवाद पत्र लेखौं कि, वा रिसर्चमा

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

के भैरहेछ भन्ने पत्र प्राप्त होला कि, खुल्दुली लाग्यो

But I was disappointed to learn

तर यो सुनेर दुख लाग्यो,

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

यस्तो भेटघाट अंग प्रत्यारोपण गर्नेको बिचमा मात्रै हुन्छ

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

मलाई प्रत्यारोपण पद्धतिकै डाहा लाग्यो ।

(Laughter)

(हाँसो)

But over the years that followed,

तेस्को केहि बर्ष पछि मैंले

I learned a lot more about donation,

अंगदानको बिषयमा धेरै कुरा जानें र

and I even got a job in the field.

यसै क्षेत्रमा काम गरेँ ।

And I came up with an idea.

एकदिन मनमा एउटा विचार आयो

I wrote a letter that started out,

र मैंले चिठी लेख्न सुरु गरेँ -

"Dear Researcher."

"प्यारा अनुसन्धानकर्ता"

I explained who I was,

मैंले- म को हुँ, आफ्नो बारेमा लेखें,

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

मैंले सोधें, २०१० को मार्चमा उनीहरुले

in March of 2010,

आँखाको रेटिना किन मागेको थिए

and I asked if my family could visit their lab.

र मैंले उनीहरुको ल्याब हेर्न चाहना ब्यक्त गरेँ

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

आँखा दानको प्रबन्ध मिलाउने अस्पताललाई

the Old Dominion Eye Foundation,

इमेल लेखें, र सम्बन्धित व्यक्तिसम्म

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

यो इमेल पुर्याईदिन अनुरोध गरेँ ।

They said that they had never done this before,

उनीहरुले भने, आजसम्म यस्तो काम गरेको छैन

and they couldn't guarantee a response,

उताबाट जवाफ आउला नआउला निश्चित पनि छैन,

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

तर प्रयास पक्कै गर्ने बचन दिए ।

Two days later, I got a response

२ दिन पछि डा. अरुपा गांगुलीको जवाफ आयो -

from Dr. Arupa Ganguly of the University of Pennsylvania.

यूनिवर्सिटी अफ पेन्सेलभेनिया बाट ।

She thanked me for the donation,

उनले अंग दानको लागि धन्यवाद दिइन्

and she explained that she is studying retinoblastoma,

र आफ्नो रिसर्च रेटिनोब्लास्टोमा को बारेमा बताईन्

which is a deadly cancer of the retina

जून ५ बर्ष भन्दा मुनिका बच्चाको

that affects children under the age of five,

रेटिनामा असरगर्ने डरलाग्दो क्यान्सर हो ।

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

उनले आफ्नो ल्याबमा भेट्ने अनुमति दिइन ।

So next we talked on the phone,

हामीले फोनमा कुरा गर्यौं,

and one of the first things she said to me

उनले सबैभन्दा पहिले

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

हामी प्रति सहानुभूति व्यक्त गरिन,

and that Thomas had given the ultimate sacrifice,

थमसले दिएको बलिदानप्रति

and that she seemed to feel indebted to us.

हाम्रो ऋणी भएको बताइन्

So I said, "Nothing against your study,

हामीले भन्यौं -

हामीले त केवल शरीर दान गरेका हौं,

but we didn't actually pick it.

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

संजोगले यहाँ आइपुगेछ ।

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

मैले भने - दोस्रो कुरा, ससाना नानीहरु दुर्घटनामा परिरहन्छन,

and if you didn't want these retinas,

यो रिसर्चको लागि रेटिना नचाहिएको भए

they would probably be buried in the ground right now.

सायद गाडेर माटोमा मिल्थ्यो

So to be able to participate in your study

बरु त्यो रिसर्चमा कामलाग्ने मौका पाएर

gives Thomas's life a new layer of meaning.

थमसको शरीरले महत्व प्राप्त गर्यो ।

So, never feel guilty about using this tissue."

तेसैले हामीप्रति ऋणी महसुस नगर्नु ।

Next, she explained to me how rare it was.

उनले हामीलाई यो रेटिना कति दुर्लभ कुरा हो, बताईन् ।

She had placed a request for this tissue six years earlier

यस्तो टिस्सुको लागि उनले ६ बर्ष अगाडी देखि

with the National Disease Research Interchange.

अनुसन्धान केन्द्रलाइ अनुरोध गरेकी रहिछन ।

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

उनले आफ्नो छनौटमा मिल्ने टिस्सुको एउटा मात्र नमूना भेटेकी रहिछन

and it was Thomas's.

र त्यो थियो थमस ।

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

ल्याबमा भेट्न जाने एउटा समय मिलाइयो ।

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

जुम्ल्याहाको ५ औं जन्मदिन पारेर २३ मार्च २०१३ मा ल्याब जाने समय मिलायौं ।

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

मैंले उनलाई थमस र क्यालमका केहि फोटोहरु इमेल गरेँ ।

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

यो टी-शर्ट तेस्को केहि हप्तापछि हुलाकबाट आएको हो ।

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

केहि महिना पछि रोस, क्यालम र म कारमा

and we went for a road trip.

सडक यात्रामा निस्कियौं ।

We met Arupa and her staff,

हामीले अरुपा र उनको सहकर्मीहरुलाई भेट्यौं ।

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

अरुपाले ऋणी महसुस गर्न नपर्दा ठुलो राहत मिलेको कुरा भनिन ।

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

हाम्रो नजरले उनीहरुले हेरेकै थिएनन ।

She also explained that Thomas had a secret code name.

उनले यो भनिन कि थोमसको पनि गोप्य कोड नाम रहेछ ।

The same way Henrietta Lacks is called HeLa,

जसरी हेनरिता ल्याक्स लाइ हेला भनिन्छ,

Thomas was called RES 360.

थमसलाइ RES ३६० नाम दिएको रहेछ ।

RES means research,

RES भन्नाले रिसर्च,

and 360 means he was the 360th specimen

३६० भन्नाले ३६०औं नमूना रहेछ

over the course of about 10 years.

१० बर्षे सो अध्ययनमा ।

She also shared with us a unique document,

उनले हामीलाई एउटा अपत्यारिलो डकुमेन्ट देखाइन,

and it was the shipping label

त्यो एउटा ढुवानी चलान थियो,

that sent his retinas from DC to Philadelphia.

DC बाट फिलाडेल्फिया रेटिना पठाएको ।

This shipping label is like an heirloom to us now.

त्यो ढुवानी चलान हाम्रो लागि पुर्ख्यौली सम्पत्ति जत्तिकै भएको छ ।

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

आर्मीमा दिने मेडल वा बिवाह दर्ता प्रमाणपत्र जस्तै ।

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

थमसको रेटिना र RNA ट्युमर उत्पन्न गर्ने जीनको

to try to inactivate the gene that causes tumor formation,

निस्क्रियाताको लागि प्रयोग हुदै रहेछ

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

उनले RES ३६० मा आधारित रहेर गरिएका केहि निस्कर्ष पनि देखाइन ।

Then she took us to the freezer

हामीलाई फ्रीजको नजिकै लगिन, र

and she showed us the two samples that she still has

अझै आफुसंग रहेका २ वोटा नमूनाहरु देखाइन -

that are still labeled RES 360.

तिनमा अझै लेबल थियो - RES ३६० ।

There's two little ones left.

साना साना २ टुक्रा बचाएर राखेको रहेछ,

She said she saved it

किन कि, थाहा छैन,

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

फेरी अर्को नमूना कहिले फेला पर्छ ।

After this, we went to the conference room

हामी कन्फरेन्स कक्ष तर्फ लाग्यौं ।

and we relaxed and we had lunch together,

केहि छिन आराम गर्यौं र दिउसोको खाना संगै खायौं ।

and the lab staff presented Callum with a birthday gift.

ल्याबका कर्मचारीले क्यालमलाइ जन्मदिनको उपहार दिए ।

It was a child's lab kit.

बच्चाको खेलौना औजार रहेछन ।

And they also offered him an internship.

उसलाई इन्टरनशीपको अनुमति पनि दिए ।

(Laughter)

(हाँसो)

So in closing, I have two simple messages today.

निष्कर्षमा, म आज २ वटा साधारण सन्देशहरु दिन चाहन्छु -

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

पहिलो, रिसर्चको लागि अंगदान दिने बिषयमा हामी खासै सोच्दैनौ ।

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

मैंले पनि सोचेको थिईन । किन कि म पनि साधारण मानिस हुँ ।

But I did it.

तर, मैंले दान दिएँ ।

It was a good experience, and I recommend it,

यो राम्रो अनुभब थियो र म यसको सुझाब दिन्छु,

and it brought my family a lot of peace.

परिवारमा यसले धेरै शान्तिको अनुभब भयो ।

And second is if you work with human tissue

दोस्रो- यदि तपाईं मानव टिस्सुसंग काम गर्नुहुन्छ, र

and you wonder about the donor and about the family,

कसको टिस्सु होला भन्ने लाग्छ भने उनीहरुलाई

write them a letter.

एउटा पत्र लेख्नुहोस ।

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

उनीहरुलाई टिस्सु प्राप्ति र रिसर्चको बारेमा लेख्नुहोस

and invite them to visit your lab,

उनीहरुलाई ल्याब हेर्न बोलाउनुहोस्,

because that visit may be even more gratifying for you

उनीहरु संगको भेटघाटले उनीहरुभन्दा पनि तपाईंलाइ

than it is for them.

आत्मसन्तुस्टी मिल्छ ।

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

एउटा अनुरोध गर्न चाहन्छु,

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

कुनै दिन तपाई यस्तो भेटघाटको अवसर मिलाउन सक्नुभो भने

please tell me about it.

मलाई पनि थाहा दिनुहोला ।

The other part of my family's story

हाम्रो कथाको अर्को पाटो -

is that we ended up visiting all four facilities

हामी थमसको अंगदान लिने

that received Thomas's donations.

४ वटै संगठनहरुमा गयौं ।

And we met amazing people doing inspiring work.

प्रेरक काम गर्दै गरेका मान्छेहरु संग भेट गर्यौं,

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

येतिखेर मैले हेर्दा - थमस हार्वर्ड गयो,

Duke and Penn --

डिउक, पेंसेल्वानिया . . . .

(Laughter)

(हाँसो)

And he has a job at Cytonet,

थमस- साइटोनेट मा काम गर्छ,

and he has colleagues and he has coworkers

उसका आ-आफ्नो क्षेत्रमा उच्च स्थानमा रहेका

who are in the top of their fields.

सहकर्मी र साथीहरु छन । उनीहरुलाई

And they need him in order to do their job.

आफ्नो काम सम्पन्न गर्न थमसको मद्धत अत्यावस्यक छ ।

And a life that once seemed brief and insignificant

यसरी, एकपटक नगन्य र छोटो देखिएको जीवन-

revealed itself to be vital, everlasting and relevant.

अत्यावस्यक, अनन्त र सान्दर्भिकमा रुपान्तरण भयो ।

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

अब यहि आशा छ - मेरो जीवन पनि सान्दर्भिक बनोस ।

Thank you.

धन्यवाद !!

(Applause)

(ताली )