About MOHAN Foundation

Established in 1997, MOHAN (an acronym for Multi Harvesting Aid Network) Foundation is an organisation with a very unique mandate of facilitating deceased and transplantation in . At a time, when no one in the country was even thinking about organ donation, the Foundation, a brainchild of a group of highly motivated & concerned group of practicing medical professionals, dared to voice the need for organ donation. It has since then advocated and facilitated various issues in this field.

Its unique mission is to ensure that every Indian that is suffering from end stage organ failure, be provided with the gift of a new lease of quality life through a lifesaving organ.

The Foundation has been carrying out a long-term crusade to create awareness and dispel myths amongst the medical fraternity and the general public by conducting talks and training programs across the country with a diverse group of people.

The Foundation’s expertise lies in counselling families of brain dead patients to donate organs. It has a team of dedicated and very driven Transplant Coordinators who do the unenviable job of counselling bereaved families to encourage them to donate the organs of their deceased loved one and save other lives. They work closely with private and government to reach out to such families and make organ donation a reality.

The following have been the objectives of MOHAN Foundation:

 Creating public awareness among a cross section of population  Motivating families of ‘brain dead’ patients to donate organs  Training professionals (Transplant Coordinators) in facilitating organ donation  Liaising with government to pass favourable legislation  Networking with other organ procuring organizations in the country

Since its inception in in 1997, the Foundation has grown and spread its reach by setting up offices in many other parts of the country like , , , , and .

MOHAN Foundation works closely with the government both at the centre and at state level. MOHAN Foundation has signed MoUs with the government of Tamil Nadu, and Rajasthan to help develop their deceased organ donation program.

All the services rendered by MOHAN Foundation are free. It is guided by the Transplantation of Human Organs Act, 1994, where no organ can be bought or sold. Hence, it does not pay anything to the organ donor family nor does it receive any monetary benefit from the recipients. The Foundation survives on the of the community.

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ANGELS OF CHANGE A structured training programme for volunteers for Organ Donation

MOHAN Foundation has launched a unique program called “Angels of Change” in which selected student volunteers from schools and colleges are taken through a customized training module to enable them to undertake awareness initiatives on organ donation amongst various audiences.

The organ donation rates are abysmally low in India and one of the main reasons for this is the lack of awareness on the subject. Given the vast population in the country and the lack of any systematic government led awareness campaigns, this becomes a mammoth task. The efforts of the few NGOs working in this field and isolated campaigns like the one by Times of India are at best, drops in the ocean.

World over, much good is attributed to the power of volunteering - for those who volunteer, those who are helped by volunteers and the community generally that benefits from the contribution of volunteers.

Engaging student volunteers – duly sensitized and trained as agents of change would be an effective way forward.

The main objective of the program is to encourage a dialogue on organ donation amongst students and young people and to engage them with the cause.

The Foundation intends to do that by:  Empowering/enabling them with knowledge on various aspects of organ donation – medical, legal, social and ethical  Equipping them with skills to use this knowledge to disseminate information and influence attitudes.  Sensitizing them to the nuances of organ donation, both from the donor and recipient perspective so that they are committed to the cause long term

The training is conducted through sessions consisting of audio-video presentations on organ donation, discussions, interactions with donor/recipient families and medical experts. Post training the volunteers are expected to conduct public awareness talks or campaigns on their own for various groups of people.

In the year 2017 MOHAN Foundation conducted 22 volunteer training programs which created more than 600 Angels of Change. This year too, the Foundation aims to expand this initiative to cover all the major schools and colleges across the country.

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Feedback from some Angles of Change volunteers:

“The sessions with MOHAN foundation left me with a profound sense of clarity on the subject. I am truly grateful to them as they played a big role in helping our campaign become a big success”. - Aditya S Nair

"Working on organ donation and interacting with organ recipients has been the best learning experience of my life. The training has made me realize that a deathbed can be called a bed of life, all it costs is a little love." - Siddhi Pal

"To be able to talk to people about organ donation has helped me grow as a person and understand the significance of the noble act. I was fortunate to be a part of this training as it has helped me spread awareness about the issue in a country where the statistics are deplorable." -Shreya Pant

"Organ donation is a relatively unknown issue. It was an absolute pleasure to educate and create awareness amongst people about such an unappreciated topic which proves to be the salvation of so many across the globe." - Saanvi Vasudevan

Angels of SRM Engineering College Angels of Anna Adarsh Matriculation School

I was totally carefree till I understood the life of a recipient. His testimony touched my heart and changed my way of thinking. This was a great motivation to work towards improving the understanding of organ donation. Thanks to Angel of Change program.” – Britzer Paul

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Concepts of Organ Donation

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FAQ on Organ Donation

What is organ donation? Organ donation is the donation of human organs or tissues from a living or dead person to a living recipient in need of a transplantation.

Who can be a donor? Anyone regardless of age, race, or gender can become an organ and tissue donor after his or her (brain stem/cardiac). Consent of near relative or a person in lawful possession of the dead body is required. If the deceased donor is under the age of 18 years, then the consent required from one of the parent or any near relative authorized by the parents is essential.

What are the different types of donation? 1) Living Donor Organ Donation: A person during his life can donate one (the other kidney is capable of maintaining the body functions adequately for the donor), a portion of and a part of the (the segment of liver will regenerate after a period of time in both recipient and donor).

2) Deceased Donor Organ Donation: A person can donate multiple organ and tissues after brain stem death (explained below) and/or cardiac death.

What organs and tissues can a deceased donor donate? If different organs and tissues are in medically fit conditions, following organs and tissues can be donated:

Organs Tissues Two kidneys Two corneas Liver Heart Heart valves Two Cartilage/Ligaments Intestine / Pancreas Vessels

So you see, a single ‘Yes’ not only saves many lives but also significantly improves the quality of life for many others. Isn’t that worth thinking about?

To the world, you may be one person. But to one person, you may be the world. ANGELS OF CHANGE, Volunteer Training Manual Page 8 www.mohanfoundation.org

What is brain stem death? Brain stem death is an irreversible condition that results from a severe injury to the brain. All areas of the brain get damaged, stop functioning and a person cannot sustain on his/her own. Vital body functions are maintained through a ventilator, which supplies oxygen and enables the heart to beat. This maintains blood circulation to the vital organs, which can be harvested for . This is a unique situation where the person has died but his/her organs can still be retrieved for transplantation for others suffering from end stage organ failure. …….. Isn’t that remarkable?

Is brain stem death legally accepted as death? Yes, as per the Transplantation of Human Organs Act 1994 brain stem death is legally accepted as death.

What is the difference between brain stem death and coma? Coma is a state of deep unconsciousness that occurs because the brain is injured in some way. The brain still functions and this can be seen in the tests that are performed. The person will be able to breathe on his own without the ventilator. The brain can heal in state of coma. While brain stem death is an irreversible condition, which results from a severe brain injury, or hemorrhage, which causes all the brain activity to stop. This can happen after a major road accident or bleeding in the brain due to stroke.

Organ donation cannot take place from patients in coma.

How does the donation process begin? The donor is declared brain stem dead by a panel of 4 doctors in a authorized to do so. A series of tests are conducted 6 hours apart and only then the person is declared brain stem dead.

The doctor who is treating the patient will explain to the family about brain-stem death. If the family is willing for organ donation, they can approach the counsellor of the hospital, the Transplant Coordinator or the doctors and nursing staff of the ICU.

Once consent for organ donation has been obtained, coordinating the process of organ retrieval begins. The family has to sign a consent form as defined by the Act.

The family’s decision, agreement or refusal to donate, is considered final.

Will organ donation leave my body disfigured? No, the recovery of organs is carried out by well-trained surgeons with the greatest care and does not disfigure the body or change the way it looks.

Can I be a donor if I have an existing medical condition? Yes, in most circumstances you can be a donor. Having a medical condition does not necessarily prevent a person from becoming an organ or tissue donor. The decision about whether some or all organs or tissues are suitable for transplant is made by a healthcare professional, considering your medical history.

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What if my religion does not permit me to donate organs? None of the religions object to organ donation and transplantation. On the contrary, religions endorse ‘giving’ and what bigger form of giving can there be than giving life. If you have any doubts you can consult your religious leader.

Is there a cost to the donor or their family? There is no cost to the donor’s family. In fact, once a family agrees for donation, all expenses thereafter until handing over the body to the relatives is borne by the hospital/recipient/NGO or society as decided by the respective State Government.

Can I sell/buy organs for myself/any of my family member? No, the ‘Transplantation of Human Organs Act, 1994’ prohibits buying and selling of organ and makes it a punishable offence. It has significant financial as well judicial implications.

Will my decision to become an organ and tissue donor affect the quality of my medical care? No. Organ and tissue recovery takes place only after all efforts to save your life have been exhausted and death has been declared. The doctors working to save your life are entirely separate from the medical team involved in recovering organs and tissues.

Who will receive my organs and will the identity of the recipients be revealed to my family? Your vital organs will be transplanted into those individuals who need them most urgently. Organs are matched to recipients based on suitability, urgency of the transplant, duration on the waiting list and geographical location. Tissues (corneas//skin) are occasionally matched e.g. for size & tissue type, but otherwise are freely available to any patient in need of a transplant.

No. The identity of both the donor & recipient remains confidential, only the basic information is provided to both the recipients and donor families after the transplant.

What is the benefit of donating organs? Donation of an organ or tissue provides an unparalleled opportunity to give someone a second chance of life. Your donation is not only impacting the life of one person or family, but it is of overall help for the society.

Most families who have made this brave decision have expressed that it helped in their grieving and healing process.

How can I be an organ donor? You can be an organ donor by signing a ‘Donor Card’ from any hospital or NGO. A donor card is not a legal document; it is only an expression of your willingness. If a person has a donor card, it means that he/she is willing to donate organs upon death.

Remember that in our country even if you have signed the donor card, it is important to bring your family in consensus with your wish, as their decision will be considered final. Your

Happiness doesn’t result from what we get but by what we give.

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pledge with us will be handed over to NOTTO (National Organ & Tissue Transplant Organization), which is a national registry.

The link to register is - http://www.mohanfoundation.org/donorcard.asp

Can I later withdraw my consent to be an organ donor? Yes. This can be done at any point. Just tear off the donor card that you carry and again inform your family members that you no longer want to be an organ donor.

What is the procedure for eye-donation? In eye donation, the clear, transparent portion covering the black of the eye is removed and not the entire eyeball. The donated eyes have to be harvested within 6 hours of death and the retrieval process takes 20 minutes.

Precautions to be taken for eye donation  Close the eyes of the deceased & place wet cotton balls on them  Switch off the fan & switch on the AC if available  Raise the head on a pillow  Call the nearest Eye Bank

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Brain Stem Death

Brainstem comprises of midbrain, pons and medulla oblongata. It connects the brain and the spinal cord by its ascending and descending tracts. It is not only a connecting path but also has many regulatory centers for vital functions in the body.

BRAIN DEATH It was in the year 1994 that the Transplantation of Human Organs Act (THOA) was enacted through which the term brain stem death was accepted in India. is defined as the irreversible loss of all functions of the brain, including the brainstem. Under this Act, two clinicians who are experts in the field (neurologist, neurosurgeon, anesthetist or intensivist) and two other from the hospital should certify brain death. One of the doctor is from a Government approved panel. In adult patients’ brain death can only be certified after two apnea test performed six hours apart are positive. The time of death is when second apnoea test is positive. The ventilator connection should be discontinued or organ should be retrieved only after these procedures.

Brain death diagnosis Coma, absence of brainstem reflexes, and apnoea are the three essential findings in brain death. Brain death evaluation should be considered in patients who have suffered a massive, irreversible brain injury of identifiable cause. Irreversible loss in the function of brain is caused by severe head injury, hypertensive intracerebral hemorrhage, aneurysmal subarachnoid hemorrhage, hypoxic-ischemic brain insults and fulminant hepatic failure. The evaluation of a potentially irreversible coma should be appropriate to the particular case; clinical or neuro-imaging evidence of an acute CNS catastrophe that is compatible with the clinical diagnosis of brain death.

Confounding condition before the diagnosis of brain stem death should be ruled out before conducting the brain stem death diagnosis.

Table 1: Conditions that confound Brainstem Death: Shock/ hypotension Brain stem encephalitis Severe hypophosphatemia Guillain- Barre' syndrome Hypothermia -temperature < 32°C Encephlopathy associated with hepatic failure, uraemia and hyperosmolar coma Drugs known to alter neurologic, neuromuscular function and electroencephalographic testing, like anaesthetic agents, neuroparalytic drugs, methaqualone, barbiturates, benzodiazepines, high dose bretylium, amitryptiline, meprobamate, trichloroethylene, alcohols.

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A complete neurological examination should be conducted to prevent incorrect diagnosis:

Reflexes Examination Criteria Coma Examination of the patient’s spontaneous movement, Confirm decerebrate or decorticate posturing, seizures, shivering, response to verbal stimuli and response to noxious stimuli administered through a cranial nerve path way. (During the examination spinal reflexes may be present).

Light pupillary Absent pupillary reflex to direct and consensual light; Confirm if other reflex pupils need not be equal or dilated. (The pupillary reflex confounding may be selectively altered by eye trauma, cataracts, high diagnosis are ruled dose dopamine, glutethamide, scopolamine, atropine, out. bretilium or monoamine oxidase inhibitors).

Corneal reflex Absent corneal, oculocephalic, cough and gag reflexes. Confirm if other (The corneal reflex may be altered as a result of facial confounding weakness.) diagnosis are ruled out. Oculovestibular Absent oculovestibular reflex when tested with 20 to 50 Confirm if other reflex ml. Of ice water irrigated into an external auditory canal confounding clear of cerumen, and after elevating the patients head diagnosis are ruled 30'. (Labyrinthine injury or disease, anticholinergics, out. anticonvulsants, tricyclic antidepressants, and some sedatives may alter response).

Pharyngeal and Tested after stimulation of the posterior pharynx with a Confirm Tracheal tongue blade or suction device. The tracheal reflex is most reflexes reliably tested by examining the cough response to tracheal suctioning. The catheter should be inserted into the trachea and advanced to the level of the carina followed by one or two suctioning passes.

Facial muscle Deep pressure on the condyles at the level of the Confirm movements temporomandibular joints and deep pressure at the supraorbital ridge should produce no grimacing or facial muscle movement.

Failure of the heart rate to increase by more than 5 beats Confirm per minute after 1- 2 mg. of atropine intravenously. Respiratory efforts in the presence of hypercarbia. Confirm

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Before performing the apnoea test, the physician must determine that the patient meets the following conditions:

Table 3: Pre-requisite before starting apnea test:

Core temperature ≥ 35°C or 95°F Euvolemia. Option: positive fluid balance in the previous 6 hours

Normal PCO2. Option: arterial PCO2 ≥ 40 mm Hg

Normal PO2. Option: pre-oxygenation to arterial PO2 ≥ 200 mm Hg Systolic blood pressure more than or equal to 100 mmHg

Once the pre-requisites are fulfilled, the physician should conduct the apnea test as follows:

Connect a pulse oximeter and disconnect the ventilator.

Deliver 100% O , 10/min, into the trachea. Option: place a cannula at the level of the 2 carina.

Look closely for any respiratory movements (abdominal or chest excursions

that produce adequate tidal volumes)

Measure arterial PO2, PCO2, and pH after approximately 8 minutes . and reconnect the ventilator.

If respiratory movements are absent and arterial PCO2 is ≥ 60 mm Hg (option: 20 mm Hg increase in PCO2 over a baseline normal PCO2), the apnoea test result is positive (i.e. it supports the diagnosis of brain death).

Connect the ventilator, if during testing  the systolic blood pressure becomes < 100 mm Hg (or below age appropriate thresholds in children less than 18 years of age)  or SpO2 drops below 91%,  or cardiac arrhythmias develop;

Immediately draw an arterial blood sample and analyze arterial blood gas.

Clinical observations compatible with the diagnosis of brain death:

 When no respiratory movement under – If PCO2 is ≥ 60 mm Hg or PCO2 increase is ≥ 20

mm Hg over baseline normal PCO2, the apnoea test result is positive (it supports the clinical diagnosis of brain death).

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 When no respiratory movement under - If PCO2 is < 60 mm Hg and PCO2 increase is < 20

mm Hg over baseline normal PCO2, the result is indeterminate and a confirmatory test can be considered.  If the respiratory movements are present - The clinical diagnosis of brain death will be negative

The following manifestations are occasionally seen and should not be misinterpreted as evidence for brainstem function:

i. spontaneous movements of limbs other than pathologic flexion or extension response ii. respiratory-like movements (shoulder elevation and adduction, back arching, intercostal expansion without significant tidal volumes) iii. sweating, flushing, tachycardia iv. normal blood pressure without pharmacologic support or sudden increases in blood pressure v. absence of diabetes insipidus vi. deep reflexes; superficial abdominal reflexes; triple flexion response vii. Babinski reflex

The Clinical Assessment of Brain Stem Reflexes as described above should be repeated in full and documented. When clinical circumstances prohibit completion of any steps in the clinical examination, these should be documented. No additional testing is required to determine brain death when the full clinical examination, including both assessments of brain stem reflexes and the apnoea test, is conclusively performed.

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Transplant Law in India

In late 1980s the Health Ministry decided to work on a legislation to regulate organ donation. A committee under Dr. L. M. Singhvi was entrusted with the task of bringing out the key points to be covered under the legislation. 1993 – The Transplantation of Human Organs (THO) Bill was submitted in the Lok Sabha where many objections were raised and discussed. 1994 - The Transplantation of Human Organs Act (THO), 1994 came into being. 1995 - The THO Rules were notified, 2008 - Recommendations were brought out as a Gazette by the Government. 2011 - The THO Act was amended it now became – The Transplantation Human Organs and Tissue Act 2014 - New rules were notified for the Amendments of 2011.

The purpose of the THO Act is to: “Provide for the regulation of removal, storage and transplantation of human organs for therapeutic purposes and for the prevention of commercial dealings in human organs”. Tamil Nadu follows the 1994 THO Act: http://www.mohanfoundation.org/tho/thobill1.asp

Briefly, the Act 1. Recognised brain death as death and laid guidelines of certification of death. 2. Set up regulations for organ donation by living person (related and unrelated). 3. It allowed for a donor to register his/her wish to be an organ donor after death. 4. Regulations of hospitals for organ and tissue transplant. 5. Recommended to have a trained transplant coordinator in transplant hospitals. 6. Set up two bodies to regulate organ transplants in a state. 7. Defined the offences and penalties under the THO Act.

The implementation of the Act is overseen by three functional bodies:

Appropriate Authority for Tamil Nadu: Authorization Committee for Tamil Nadu: Directorate of Medical & Rural Health Services Directorate of Medical Education 361, DMS complex, Anna Salai, Chennai 600006 162, EVR Periyar Salai, Chennai 600010 Tel: 044-24321835, 24321826, 24335077 Tel: 28366890 to 28366895 website: www.tnhealth.org website: www.tnhealth.org TRANSTAN Transplant Authority of Tamil Nadu 1045, I Floor Fourth Circle, TN Government Multi Super Specialty Hospital, Omandurar Government Estate, Anna Salai, Chennai – 600 002 Tel: (91) 44 25363141; website: http://www.dmrhs.org/tnos/

Government of Tamil Nadu brought out a number of government orders to facilitate deceased organ donation. http://www.mohanfoundation.org/government-orders/tamil-nadu-gos.asp Jah; epiy MNyhrid kw;Wk; FLk;g xg;Gjy;

Don’t take your organs to heaven. Heaven knows we need them here. ANGELS OF CHANGE, Volunteer Training Manual Page 16 www.mohanfoundation.org

,e;jpahtpy; cWg;G jhdk; nra;tjpy; FLk;gq;fs; kpfg;nghpa பங்埁 வகிக்கின்றனர்;. FLk;gj;ij Nrh;e;jth;fs;jhd;> jq;fs; Nerj;jpw;Fhpathpd; cly; cWg;Gfis> gpw capiufhf;fh> nfhLf;fyhkh ? Ntz;lhkh ? vd;w Kbit vLf;fyhk;. mth;fs; rk;kjpj;jhy; மட்翁மா rl;lgb xg;Gjy; gbtj;jpy; xg;Gjiy ngwyhk;. ifnaOj;jpl;l xg;Gjy; gbtj;Jld;> kw;w rl;l hPjpahd kUj;Jtkid gbtq;fSld; kUj;Jt nray; Kiwfis njhlq;fyhk;. tpgj;jpdhy; Vw;gLk; mjph;r;rp kw;Wk; vg;nghOJ rk;ke;jg;gl;l egh; ,we;J tpl;lhh; vd;W FLk;gj;jhUf;F njhptpf;fg;gLfpwNjh> mg;nghOJ mth;fs; Jauk; milthh;fs;. MNyhrfh; cly; cWg;G jhdj;jpw;fhf> FLk;gj;jpdiu mDFk; nghOJ> vg;nghOJk; ,ij epidtpy; itj;J nfhs;s Ntz;Lk;. MNyhrfh; (my;yJ) xUq;fpizg;ghsh; MNyhrid toq;Fthh;. kUj;Jtkidapy; jPtpu rpfpr;ir gphptpf;F ntspNa my;yJ NtW jdp miwapNyh kUj;Jtkid MNyhrfh; / xUq;fpidg;ghsh; FLk;gj;jpy; cs;sth;fsplk;> 믂ளைச்சாퟁ kw;Wk; mjd; njhlh;ghd re;Njfq;fSf;F tpsf;fkspg;ghh;. mjw;F gpd; FLk;gj;jpdUf;F cly; cWg;G jhdk; nra;tJ njhlh;ghf MNyhrid toq;fg;gLk;.

 FO MNyhrid - mth;fs; xU FLk;gkhf ,Ue;jhy; midtUk; ,ize;J xU KbTf;F tUthh;;fs;.

 jdpg;gl;l MNyhrid - FLk;gj;jpy; xUth; kl;Lk; jdpg;gl;l tpjkhf KbT vLg;gtuhf ,Ue;jhy; nfhilahspapd; FLk;gj;jplk; mDFk; nghOJ epidtpy; nfhs;s Ntz;bait  Nehahspapd; epiyia gw;wp cWjpahf njhpe;jpUf;f Ntz;Lk;.  tof;fkhd kw;Wk; Kiwahd Nkk;gLj;Jjy;  czh;r;rpfSf;fhd cjtp  fw;gjw;fhd cjtp jPtpu rpfpr;ir gphptpy; cs;s gzpahsh;fs;> FLk;gj;jpdUf;fhf nra;a $ba nghWg;Gfs;  nfhilahspia mWit rpfpr;ir muq;fk; nfhz;L nry;Yk; tiu rhpahf guhkhpf;f Ntz;Lk;.

 nfhilahspapd; midj;J kUj;Jt Mtzq;fs; kw;Wk; பபா쏁ட்களை mth;fspd; FLk;gj;jpdhplk; xg;gilf;f Ntz;Lk; rf nrtpypah;fSf;F fy;tp Gfl;Lk; nghOJ epidtpy; nfhs;s Ntz;bait. ANGELS OF CHANGE, Volunteer Training Manual Page 17 www.mohanfoundation.org

 gy tpjkhd cly; cWg;G nfhilfis gw;wpa mwpT  믂ளைச்சாퟁ vd;why; vd;d vd;gij gw;wpa njspT  nfhilahspia Njh;T nra;tJ kw;Wk; guhkhpg;gJ.

MNyhrid nra;a $bait nra;a $lhjit $h;e;J ftdpg;gJ Gj;jpkjp $WtJ njspTgLj;Jjy; jPh;g;G $Wjy; gpujpgypg;gJ MNyhrid ngw tUgthpd; gpur;ridfis jPh;f;f Kaw;rp nra;tJ gaDs;s Nfs;tpfis Nfl;gJ MNyhrid ngWgth;fsplk; czh;T g+h;tkhf ,iztJ MNyhrid ngWgth;fspd; MNyhrid ngWgth;fspd; epiyapy; ,Ue;J ghh;g;gJ gpur;ridfis ekJ ghh;itapy; ghh;g;gJ MtzgLj;Jjy;

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Organ Allocation in Tamil Nadu

To participate in the deceased organ donation system all hospitals need to register with TRANSTAN - the co-coordinating body in the state. The waiting lists of organ failure patients are regularly updated and sent to TRANSTAN by the transplant coordinator of the hospital. This list is maintained on a centralized secure web-based system under the supervision of the State Authority. The different types of registries are:

All Combined Hospital All Private Government Government & Registry Hospitals Hospitals Private Hospitals

To ensure equitable distribution of organs the Tamil Nadu is dived into 3 zones – north, south and west. Allocation of organs is done separately for each zone, after organ matching and prioritizing based on pre-set criteria through a computer program.

The first important principle of organ sharing is that organs should be treated as national resource and no organs should be wasted. The ideal principle of sharing should be based on the organ going to the neediest patient. The organs should first be matched using blood group, size and age.

A patient who wants to be put on the waiting list should be aware of: a. That merely by having the name on waiting list does not guarantee that the organs would be available. b. Dynamics of the waiting list of the organ donation and transplant programme. The list moves as the transplant takes place. c. The need to give correct contact information to the transplant coordinator. The top five in the waiting list from each group are sent a ‘Be ready’ form (be healthy, have ready finance and be close to the transplant centre) for a transplant at any time. Not complying would mean that they would lose their turn on waiting list. d. The short and long term graft outcomes of the transplant (Discuss with your doctor).

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DONOR IN Government hospital Private Hospital

Donor

Government Allocation criteria Hospital Shared Kidney Donor & other organs Private Hospital

RECEPIENT RECEPIENT Combined

Government

Hospitals

Combined Government & Combined Private Hospitals Private Hospitals

Combined Combined Government Hospital Government and Private Hospital of other states of other states

Combined Private Hospital of other states

Patients of Foreign Origin

Organ Sharing Network model adopted by Tamil Nadu is as per the Government Order No 287 of 2008 issued by the Health and Family Welfare Department

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Stories of Hope Response Questions - Student Worksheet

Directions: Read one or more stories of a person who has been an organ donor. After reading his or her story, respond to the questions below. 1. Why did you choose this story? 2. What are your thoughts after reading this story? 3. Did it cause you to think differently about organ donation? 4. Any additional comments

Stories of Hope

Case 1 – Dr. Shail Gupta

Often times we take certain things for granted. "Policemen are never afraid", "Teachers don't learn" "Leader's don't follow" "Doctors do not fall ill". Well, fate does have its own maxims and none of world's assumptions hold any leverage against it.

Dr. Shail Gupta was a Homeopath who practiced her profession with her husband (who is also a doctor) in her own clinic in Model Town, Delhi. A spiritual and altruistic person at heart, she would rise as early as 5 every morning, go for a stroll with her husband, cook for the family, manage the household after which she would rush to the clinic every single day working to better the conditions of her many patients.

So it was nothing less than an irony of fate when she herself was brought into emergency of a private hospital in an unconscious state on July 29, 2012. The doctors worked hard to resuscitate her, but then Mrs Gupta had already slipped into the irreversible condition that is Brain death at the age of 59 years. The family was inconsolable, but being a family of doctors they understood the reality of the situation.

The elder daughter and her husband (both physicians) were spoken to and counselled for organ donation by the Transplant Coordinator. They understood brain death and seemed open to the idea of organ donation. However, they were not too sure how the patient’s husband would respond to the same. However, the husband, Mr Gupta was also spoken to and he agreed too. He said, “My wife would have wanted to donate her organs”. He also shared how his wife had run around when his father died to donate the corneas. However it could not be done as there had been a sufficient delay.

Other family members joined – younger daughter, her husband and her in-laws and some extended family. They were all explained the concept of brain death, how organ donation would take place, which all organs would be retrieved, etc. They were shown an animation of brain death as well so that there was complete clarity in their minds. They took the brave yet difficult decision to donate her organs.

The family shared that they had seen the standee outside the ICU bearing a message on organ donation and had begun to discuss the possibility amongst themselves. Her patients have expressed immense grief and lose since her absence in the clinic, but then even in death she healed the lives of many.

ANGELS OF CHANGE, Volunteer Training Manual Page 22 www.mohanfoundation.org

Case 2- Leena Anand

The smile in Leena Anand’s picture derives from the cheer and joy she spread during her life. 25 years ago when Rajesh Anand met Leena at a MNC where they worked, love blossomed and all through 23 married years it held them together during the tough times. Rajesh mentions her as a charming personality, always bubbling with energy and managing everything, from the business to the household chores. As their son Ritesh was a foodie, Leena, an excellent cook tended to be very adventurous with the dishes. For Rajesh, his wife Leena defined all that a wonderful multidimensional person could be.

Little did they know that life would strike them hard. When she fell unconscious during normal routine work that was the starting point of troubles for the family. Though she had a history of migraine it never recurred. In the initial stages her symptoms were treated as vertigo. It was after only after 3 months when she fell for the third time that Rajesh insisted on an MRI and the family got the devastating news of Leena suffering from aneurysm. After consulting her brother a doctor himself, they zeroed in for Dr. Vipul Gupta and she was admitted to Medanta The Medicity Hospital on July 11, 2015. A series of operations were carried out in order to control and minimize complications of the intra cranial aneurysm. All of them were successful and she was about to be discharged when she fell once again in the washroom of her hospital room. The aneurysm had ruptured causing her to sustain brain death on August 4, 2015. The family was given time to come to terms with the loss.

The family was introduced in an earlier time to the concept of organ donation when they saw the movie “Ship of Theseus”- Leena then expressed to Rajesh that it would be something that she would really love to do if and when the circumstance occurred. Now Rajesh reminisced about Leena’s wish. Though it was a well-educated family and Leena came from a family of doctors but when MOHAN Foundation approached them for organ donation her brother replied saying “I would still like to give my sister one week.” And sure enough, exactly on August 12, 2015 he called MOHAN Foundation and asked to take forward the process of organ donation.

Six months after the donation, MOHAN Foundation met Rajesh at their home in Defence Colony. Leena is still alive for him in all the three people who have her organs. “I know she is still somewhere out there”, said a teary eyed Rajesh. He enquired about the well-being of the recipients. Representatives of MOHAN Foundation reassured in that regard. One of the recipients also conveyed to Mr. Rajesh her heartfelt gratitude and thanks for Rajesh’s noble decision which gave her a new lease of life.

The picture of Leena evokes feelings of certainty that she is still cheerfully alive in her recipients.

ANGELS OF CHANGE, Volunteer Training Manual Page 23 www.mohanfoundation.org

Case 3 – Aishwariya

The first thing that I noticed about her was the vibrant blue nail polish on her toes, and then the long braid… Aishwariya was a lively 13-year-old girl, so they all said. And then there were the machines she was connected to as she lay on a bed in the Intensive Care Unit – dead. A sudden catastrophic bleed in the brain, with no warning whatsoever left her brain dead and her family stunned.

Memories, so many of them… yet not enough; these were Aishwarya’s mother’s feelings. Rama told us with pride that her child would participate in every activity in school, and then murmured brokenly, “She went to school on Monday morning, just like any other day, and now she has returned four days later never to go back again.” Her father Prabhakar with tears in his eyes shared that she was the only girl child in his family. An uncle remembered that Aishwariya always had a smile that she loved to dress up, visit her cousins and play with them. Her friends said that she’d told them that morning that she’d got all that she needed for Diwali and that she was happy.

What struck us when we met the family to counsel them was their unwavering commitment to organ donation. Her maternal uncle said, “We are doing this for Aishwariya…for her life to be meaningful.” It meant a long waiting period, more than 24 hours while the procedures were carried out. The entire family waited patiently, stoically till it was all done.

We visited the family on the day of the funeral to pay tribute to Aishwariya. We laid a garland and lit a special candle on which was inscribed “Light…Pass it on.” I watched Rama standing by gazing at her daughter’s face. Someone had mentioned to me that Rama was a Sanskrit pundit and a long forgotten prayer from my childhood came to me. I reached for Rama’s hand, held it, and recited the verse.

Asato mā sadgamaya Tamasomā jyotir gamaya Mrityormāamritam gamaya Oṁ śhānti śhānti śhāntiḥ

From ignorance, lead me to truth; From darkness, lead me to light; From death, lead me to immortality Peace, peace, peace

Rama looked at me and said, “Aishwariya too recited that in school every day…”

On Friday 21st October 2016 Aishwariya donated her heart, two kidneys, liver (that was shared by two children) and the corneas (that allowed two people to see again).

Aishwariya passed on the light of life to seven people whose lives were threatened with darkness. She attained immortality in death. We pray that her family attains peace.

ANGELS OF CHANGE, Volunteer Training Manual Page 24 www.mohanfoundation.org

Case 4- Marie Therese Marie Therese HampartZoumain’s story is a beautiful example of how humanity and noble deeds know no boundaries and how sometimes in the face of a tragedy, there emerge kindred souls amidst geographical variations. The story of this beautiful French woman stands testimony to this very fact.

Marie and her husband Henri had come to visit their son Sebastian, who works with an MNC in Gurgaon and lives in Delhi. Marie was rushed into Max emergency on the evening of March 13th, 2014 in a state of unconsciousness. She was diagnosed with a subarachnoid hemorrhage which meant an irreversible damage had caused her brain to die. The son, Sebastian was approached by the doctors at Max along with MOHAN Foundation counselor regarding donating her organs. Like any other offspring, he was fraught with the grief of suddenly losing his mother in a foreign country and was confused about taking a decision that involved her and people that did not belong to his nationality.

“My mother always talked about organ donation and ideally we would have preferred that she had died in her own country and helped save the lives of her fellow countrymen.” Said her son, Sebastian. He was additionally burdened with the massive task of organizing the logistics of taking her mother’s body back to France for her final rites. Hours of discussion with the MOHAN Foundation counselor helped him understand brain death, the laws relating to organ donation, ventilator etc. In the end, he and his father were convinced that this is what Marie would have wanted them to do. Henri who only spoke French later wrote to the counselor. When translated the words were, “It was sad that I could not communicate with you but the expressions in your look & the sensitivity in your eyes always said it all”

The HampartZoumain’s hail from a quaint little picturesque village in France, 20 kms from Lyon called Sain-Bel. Everyone in this village knew Marie for she was an excellent cook and would always help her older neighbours with their outdoor chores. She had worked in the French finance ministry for most of her former life and was spending the latter travelling, trekking and dancing. France has an ‘opt out’ system of organ donation where every citizen is considered an organ donor unless he/she has opted out of it. Marie had spoken passionately about this to her family on many occasions.

While speaking to the Transplant coordinator from MOHAN Foundation, Sebastian reminisced Marie’s deep desire of wanting to die without suffering and burdening her family and said that though the incident was shocking, they were glad that she could keep her wish and in the process, give a couple of others the gift of life. He said that henceforth, India will be connected to their family history for eternity. Both her kidneys went to recipients at Max hospital. Her liver was given to an Army jawan at RR Army hospital.

Marie loved India. And as one looks at her picture against the majestic Taj, you can only marvel at the largeness of this lady who gave back more than what she had received and was immortalized through the lives of three other people.

ANGELS OF CHANGE, Volunteer Training Manual Page 25 www.mohanfoundation.org

Important Contact Details

MOHAN Foundation, Chennai (Headquarters) 3rd Floor, Toshniwal Building, 267, Kilpauk Garden Road, Chennai-600 010. India.

Toll free 1800 103 7100 P: 044-26447000 M: 94446 07000 E-mail : [email protected]

[email protected]

Counsellors and transplant coordinators Rajiv Gandhi Government General Government Kilpauk Medical College Hospital Hospital 8300062214 83000 62215

Government Royapettah Hospital Government Hospital 83000 62213 944439254

Eye Bank Chennai Lions Eye Bank Trust & RIO-GOH - C U Shah Eye Bank, Research Foundation 18, College Road, Chennai - 600 006, 98410 41064 044 28281919, 044 42271830, 044 28226694. 044 28553840

Skin Bank Government Stanley Hospital Right Hospital Tissue Donation Counselor PRO – 80721 07836 86085 12868 Toll free 1800 425 03939

Government Kilpauk Medical Hospital Tissue Donation Counselor 83000 62214

Homage to Donors

ANGELS OF CHANGE, Volunteer Training Manual Page 26 www.mohanfoundation.org

Story 1. Dr. G. R. Ratnavel and skin banking at Stanley Medical College Hospital In what could be an ultimate tribute, the skin of leading dermatologist and cosmetologist, Dr. G. R. Ratnavel, was donated to the first cadaver skin bank in the government sector at Stanley Medical College Hospital (SMCH). Dr. Ratnavel spearheaded setting up the cadaver bank in the hospital and it was opened on 30th August 2016.

On a visit to Trichy to attend a conference, in October 2016, he collapsed during visit to the Rock fort Temple on Friday. He suffered intracranial haemorrhage, said Dr. Ramesh, Resident Medical Officer, SMCH. Dr. Ratnavel (50), who headed the department of Cosmetology at Stanley Medical College Hospital, was declared brain dead on Sunday and his organs were retrieved at in Trichy.

Story 2. A young girl lives forever Miss. Renuka 18yrs old was one of four siblings. She had just completed her 12th standard and was living with her family in Thirunendravur, Thiruvallur district. As normal young girl who loved to be in touch with her friends, she was always on the phone.

In August 2014 Renuka was sitting on the parapet of her terrace playing games in her mobile, she lost balance and fell from the terrace to the ground. She was taken to Rajiv Gandhi Government General Hospital, Chennai with severe head injury. The next day the family came to know that their daughter was brain dead. This news was shocking for the family members and they were not in a state to accept the situation.

Around midnight her father accepted the reality and took the decision to give her organs so that others could live. He called the counsellor and told them about his decision.

Today, Ramadoss feels proud of his daughter because at such a young age she was able to save many people's life. He said that the family is trying its best to survive their loss but they are happy that at least her organs are surviving in the universe.

We salute Ms. Renuka's family for their courageous decision and for giving for new life to so many patients.

For more such stories - http://www.mohanfoundation.org/donor-memorial/index.asp

Public Survey on Organ Donation

Happiness doesn’t result from what we get but by what we give

ANGELS OF CHANGE, Volunteer Training Manual Page 27 www.mohanfoundation.org

DEMOGRAPHY

RESPONSE QUESTIONS YES NO NOT SURE 1. Are you aware that organs can be donated to save a life of

another person? 2. Organ can be donated -

During life After death Both conditions 3. Which organs can be donated? All Organs & Tissues (or)

Eye Skin Bones Heart Lungs Pancreas Kidney Liver

4. You heard about organ donation from: Print media Radio TV Film Online Channels

Awareness talk Personal experience Work experience

5. Do you have a relative whose organs have been donated?

6. Can we sell our organs (like Kidney)

7. Have you heard of brain death?

8. As a relative are you be willing to donate the organ(s) of a brain dead relative?

9. Do you know of a law on brain death, organ donation and transplantation?

10. Do you know what an organ donor card is?

11. Are you willing to carry an organ donor card and express your desire about organ donation after your death?

Age: Gender: Male Female Transgender

Religion: Hindu Christian Muslim Others Not interested

Education : High School & Others Graduate Post Graduate

Email ID: Signature ______Venue : Date :

ANGELS OF CHANGE, Volunteer Training Manual Page 28 www.mohanfoundation.org

DONOR REGISTRY FORM

PERSONAL DETAILS

COUNTRY:

FIRST NAME:

LAST NAME:

AGE:

SEX: MALE FEMALE TRANSGENDER

BLOOD GROUP:

ORGANS THAT I WISH TO DONATE: ALL ORGANS & TISSUES (OR) EYE/CORNEAS HEART LIVER KIDNEY PANCREAS

ADDRESS:

EMAIL ID: MOBILE:

PHONE:

EMERGENCY CONTACT PERSON DETAILS:

NAME:

RELATIONSHIP:

ADDRESS:

EMAIL ID:

MOBILE:

PHONE:

SIGNATURE OF THE APPLICANT

ANGELS OF CHANGE, Volunteer Training Manual Page 29 www.mohanfoundation.org

Notes

ANGELS OF CHANGE, Volunteer Training Manual Page 30 www.mohanfoundation.org

Notes

I am done writing this chapter of my life. I think it’s time I start a new one.

ANGELS OF CHANGE, Volunteer Training Manual Page 31 www.mohanfoundation.org

என்쟁ம் நான் நிளனவில் நிற்க!.....

ஒ쏁 நாள் ம쏁த்鏁வர் என் 믂ளை பசய쮿ழந்鏁 வாழ்க்ளக 믁羿ந்鏁விட்டதாக அறிவிப்பார் ....

அந்நாள் என் வாழ்ퟁ மரணப்ப翁க்ளக என்றல்லாமல்- இன்பனா쏁 வாழ்வின் பதாடக்கம் என்쟁 埂쟁ங்கள்

இதயமம ஒ쏁 வ쮿பயன பகாண்டவ쏁க்埁 என் இதயத்ளத பகா翁த்鏁 - அவாின் இதய வ쮿யிளன மபாக்க பசய்뿁ங்கள்

毂ாியளனமயா,சிாிக்埁ம் 埁ழந்ளதயின்믁கத்ளதமயா , களடக்கண்பார்ளவயில் பபாங்埁ம் காதளலமயா கண்羿டாதவ쏁க்埁 என் இ쏁 விழிகளை பகா翁த்鏁 அளனத்ளத뿁ம் பார்த்鏁 மகிழ பசய்뿁ங்கள்

வாகன விபத்தில் சிக்கி தவிப்மபா쏁க்埁 என் இரத்தத்ளத பகா翁த்鏁 அவர்கைின் 埁ழந்ளதகள் விளையா翁வளத காண பசய்뿁ங்கள் ,

毁த்திகாிப்ꯁ இயந்திர க쏁விளய சார்ந்鏁 வாழ்பவார்க்埁 - என் சி쟁நீரகத்ளத பகா翁த்鏁 அவர்கைின் இயந்திர க쏁வி வாழ்க்ளக மபாக்க பசய்뿁ங்கள்

என் உட쮿쯁ள்ை எ쯁ம்ꯁ,சளத , ஆகியவற்ளற ஊன믁ற்றவ쏁க்埁 பகா翁த்鏁 ஊனம் என்ற 埁ற்ற உணர்ளவ மபாக்埁ங்கள்

என் 믂ளையில் உள்ைஅ迁க்களை எ翁த்鏁 ஆராய்ந்鏁 ,வாய் மபசஇயலாதவர்க쿁க்埁 ,கா鏁 மகட்கஇயலாதவர்க쿁க்埁 பகா翁த்鏁 வாய்க்埁ைிர மபச ,மதன் 毁டர மகட்க பசய்뿁ங்கள்:

என்ளன ꯁளதக்க வி쏁ம்பினால் அ鏁 என் தவ쟁 ,பலகீனம் ஆகியளவயகமவ இ쏁க் கட்翁ம்

என் பாவத்திளன சாத்தாꟁக்埁ம் என் உடளல மனிதꟁக்埁 பகா翁த்தி翁ங்கள் நான் பசான்னவற்ளற பசய்ퟀமரயானால் நான் வாழ்மவன் ...... என்பறன்쟁ம் ......

Robert Test - 1976

ANGELS OF CHANGE, Volunteer Training Manual Page 32 www.mohanfoundation.org