Indian Transplant Newsletter.Vol. 13 Issue No.: 42 (Jul 2014–Oct 2014)

A Recipient Family speaks

My daughter, Hvovi Minocherhomji had been diagnosed with congenital cardiomyopathy when she was 16 years old. Our family’s first reaction was disbelief. How could this beautiful, strong, seemingly healthy child, who never even suffered from common  childhood ailments, be as desperately ill as the doctors were saying she was?

The sheer terror we felt on first hearing about her condition from the doctors slowly receded as months passed without her exhibiting any of the symptoms we had been told to expect. Hers was a progressive disease with no known cure. We were, however, clutching on to the hope that the slow rate of progression of her myopathy  might mean that she would remain symptom free until she reached her forties at least. The fact that she was leading a relatively normal life even months after the doctors had offered such a grim prognosis lulled us into a further sense of security.

This was shattered on the evening of December 18, 2012 when she suffered a stroke due to the impaired functioning of her heart. Unable to speak, and with her right side paralysed, the gravity of her illness was brought home to us with sickening force. Although she recovered almost miraculously from the stroke with only a minimal deficit in the functioning of the fingers of her right hand, and right toes the horror of that episode left her mentally shattered. It took her many months to regain some semblance of confidence and put the fears of another stroke occurring behind her.

This was when, in desperation, we first looked at the idea of a heart transplant for her. At that time, however, we were convinced that successful transplants were only carried out abroad, and that the wait for an organ after being placed on the organ recipient list could be extremely long. Add to that the logistics of moving bag and baggage to a foreign country where we knew no one, for an unspecified period of time, and the expenses involved, which would be phenomenal. The very idea was overwhelming, and seemed totally impossible.

After the stroke, Hvovi’s condition steadily declined. She suffered from breathlessness, fatigue and severe headaches. Her heart functioned at only 25% of its normal capacity. At an age where she should have been spreading her wings and discovering life and all it had to offer, it was incredibly hard to see my daughter confined to bed, each day a struggle that left her exhausted and despairing.

It all came to a head on the 16th of October 2013 when she collapsed and had to be rushed to Holy Family Hospital. She had no pulse, no blood pressure and no heartbeat. The cardiac team under Dr. Brian Pinto battled heroically to revive her even when all hope seemed lost, and after 45 minutes, they managed to get her heart beating again. Again, miraculously, even though her brain had been deprived of oxygen for so long, she showed no deficit after this episode.

We were bluntly informed by the doctors that my daughter had not more than a few weeks to live, her heart was deteriorating extremely rapidly. Her only chance, as per Dr. Brian Pinto, was a heart transplant. He strongly recommended the Fortis Malar Hospital in Chennai, where they had an excellent transplant team headed by Dr. Balakrishnan, whom he knew personally.

With our backs to the wall, and having no other options whatsoever apart from helplessly standing by and watching our daughter die, it suddenly seemed a very easy decision to make. Dr. Pinto’s conviction and optimism further emboldened us. No matter how scary the thought of a transplant seemed, the alternative was scarier.

A preliminary meeting with Dr. Balakrishnan filled us with hope. Here was a doctor who inspired trust and confidence. Dr. Suresh Rao, with his kind eyes and gentle demeanour, did much to reassure us and allay our fears. Within a week, we flew down again with my daughter and completed the formalities and tests necessary to get her enrolled on the recipient waiting list of the Tamil Nadu Government’s organ donation program.

In an alien city, under the most trying of circumstances, Fortis Malar became our home, and the entire cardiac team our family. Not for an instant did we feel alone and hopeless. The kindness of strangers, who gravitated together bound by common suffering, alleviated our fears and helped us on this most difficult journey.

The most emotionally draining part of the whole experience was the wait for word mfrom the hospital regarding availability of a suitable heart. As each day dawned, we were filled with hope that today would be the day we would receive the news we so eagerly awaited. As each day drew to an end without that much awaited phone call from the hospital, we were filled with despair. Would it be too late for her by the time a heart became available?

Apart from her deteriorating physical condition, my daughter had become extremely fragile emotionally. She was close to breaking point. Wracked by homesickness, her frail body ravaged by illness, she lost the hope and courage she had held on to all through the last two years.

We had arrived in Chennai on the 19th of May 2014. It was now nearly a month that we had been in Chennai, waiting for a heart. My daughter’s condition was worsening by the day. She was pleading with us to take her home, unable to bear her suffering, ready to face the certain outcome of returning without the transplant.

Just when it seemed that we were all at breaking point and ready to abandon all hope, God worked his miracle. At 5.30 am on the morning of 16th June 2014, the hospital called. A heart that seemed to be a match for my daughter had become available. If the tests for the cross-matching of tissues between the donor and Hvovi were favourable, the transplant would be performed later in the day.

By 7 am, we were at the hospital. Another candidate for a heart transplant, an elderly doctor with the same blood group and a lady from Delhi had also been called. The heart would be given to either of them or to my daughter, whoever proved a bettermatch. Blood was drawn from all for the test. The wait was agonising. What if the other person was a better match for the donor heart? Would we be sent back home to wait until another heart became available? Would my daughter be able to survive until then?

We were weak with relief when the doctors informed us that the heart was a perfect match for Hvovi, and that the transplant would be carried out after a team from Fortis Malar Hospital went to the Government Hospital to harvest the heart from the deceased donor. In the midst of our joy, we sent up a prayer for the aspirants who had been sent back to continue the wait for another heart.

The recovery of the heart from the deceased donor took much longer than expected. The team of doctors from the hospital that had been allotted the liver was held up due to some reason. The longer the period between harvesting of the donated heart and the transplant, the lesser are the chances of success. It was then that we saw another miracle take place. The Government Hospital was 13 km away from Fortis Malar Hospital. It was 6.30 pm in the evening, peak traffic time, along the most congested stretch of road in all of Chennai, a journey that would take 45 minutes to an hour in the normal course. With each minute that the harvested heart took to reach my daughter, the odds of a successful transplant would diminish.

That was when Chennai showed what a big heart it has. The Traffic Police Dept was authorised by the Tamil Nadu Govt. to create what is called a ‘Green Corridor’ all along the 13 km route that the ambulance transporting the heart would take to reach Fortis Malar Hospital. Traffic cops armed with walkie-talkies were stationed at short intervals all along the route to make sure that all signals which the ambulance was approaching were turned green. Peak hour Chennai traffic was halted along the route to allow the ambulance to pass without hindrance.

A journey that would have taken 45 minutes under normal peak hour conditions at that time of the evening was completed in 13 minutes flat. Three agencies - the Chennai Traffic Police Dept., the Chennai Police Dept., and the Govt. Of Tamil Nadu, along with the wonderful people of this city, came together to ensure that the heart reached my daughter, a girl who was not even a resident of Chennai, in the shortest possible time.

It is impossible to describe our feelings when the ambulance, sirens screaming, drew up to the hospital with the heart that would save my daughter’s life. Amidst applause from the gathered press and general public, the heart was rushed up in its special container to the operation theatre where my daughter lay sedated and prepared for the transplant.

The operation lasted for 5 hours. At precisely 10.30 pm the new heart started beating for the first time in my daughter’s chest.

Now it was time for a new terror – rejection of the alien organ implanted into her body. The first few hours and days after the transplant were very crucial. Would her body accept the new heart? It would be unbearable if after all she had been through, her body would not accept it, and she showed signs of rejection of the new organ. Rejection and fear of infection were what we feared at this stage. Because of the high dosage of immunosuppressant drugs she was on to prevent rejection, her bodywas extremely vulnerable to any infection. Even a normally common infection could prove fatal for her.

The morning after the transplant, the effects of the anaesthesia wore off, and even though she was in intense pain, my daughter shed tears of happiness at the prospect of freedom from the life of pain and illness she had been leading. She hadn’t cried as much in the years of ill health and suffering as she did on the day after the transplant. Her tears just wouldn’t stop. These were tears of hope, and relief, that the unrelenting nightmare of the last two years had ended.

Her happiness, and ours, wouldn’t have been possible without the supreme act of selflessness performed by the mother of the deceased donor, a 23 year old boy killed in a road accident on the night of 15th June 2014 in Chennai. In her deepest hour of grief, this brave lady gave the gift of life to desperately ill people by deciding to donate her brain-dead son’s liver, kidneys, eyes and heart. All the wonderful work being carried out by the Tamil Nadu Govt. Organ Transplant Programme, and the efforts of the various agencies towards making the programme a success would be in vain if it were not for the generosity of people like the deceased donor’s mother who, putting their own grief aside try to bring light into the life of others.

Hvovi has a long road to walk yet. She will be on medication all her life in order to battle rejection of the transplanted heart. Utmost care will have to be taken to avoid even innocuous infections like colds. But each day that she steps out living the life she had been robbed of for the last few years, is nothing short of a miracle. Our hearts are filled with gratitude. To the wonderful doctors, to the hospital, to the city of Chennai, and most of all to the deceased donor, whose heart beats in my daughter’s chest, and to the strong, lovely lady who is his mother.

How to cite this article:
- Minocherhomji A, Navin S. A Recipient Family speaks. Indian Transplant Newsletter.Vol. 13 Issue No.: 42 (Jul 2014–Oct 2014)

How to cite this URL:
- Minocherhomji A, Navin S. A Recipient Family speaks. Indian Transplant Newsletter.Vol. 13 Issue No.: 42 (Jul 2014–Oct 2014). Available at:

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  • Keywords: cardiomyopathy, heart transplant, recipient, green corridor, deceased donor