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World Liver Day - How a mother's partial liver donation saved her son

A mother narrates a heart-wrenching story of how her liver helped her son survive and get back to normal life in a couple of months.

Written by Debjani Arora |Updated : April 18, 2017 12:53 PM IST

Organ donation or organ transplant though rare has a fair success rate in today s technologically developed medical world. This is one reason deaths due to organ failure has significantly reduced. In fact, acute organ failure in kids and infants can also be treated if a donor (a parent or relative) is readily available and the operation is done in time. Here is one such story of Sangam and Manjunath Dinesh, a mother-son duo who had to undergo a partial liver transplant to save the latter s life. Here s the story as narrated by Sangam -

Today Manjunath is 10-years-old and lives a life like any other boy his age. He is a typical boy of his age - he goes to school, yearns for attention, empathises with others, is inquisitive and playful. But all this has been possible only because of the newfound energy bestowed on him after a liver transplant.

If I go on a flashback trip, things were a lot different just six months ago. This is not to say my son was not naughty and never threw tantrums, but he was more fragile and weaker than what he is today.

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As a mother, this did worry me, but well-wishers and doctors assured that this was just a passing phase. So I kept my fingers crossed hoping that one day everything will change. When he was in Upper Kindergarten, I noticed that his weight was just going steady at 10 kg. Of course, there used to be a rise in one or two kilos once in a while but it would again come back to 10. Trips to the paediatrician confirmed that everything was fine and growth spurt at the age of five is quite normal. But I could never put my mind to rest. Soon, my son who used to be playful and jovial most of the time started getting fatigued and tired very quickly. But we brushed off these symptoms thinking that it was a part of growing up. With every passing year, his weight remained stagnant and appetite dwindled. He didn t eat enough for his age. He would take his meals with complete dissatisfaction and feel full after taking just a few morsels. Four years passed and his growth just stopped. He looked fragile with a weight of 10 kg at age 9. This could have given you an idea about how helpless we as parents felt at that time.

Receiving the bad news

While my son never complained of any problem, we noticed that his stomach had got distended. His eyes and palms had turned yellow. This was when we decided to ask the paediatrician for a better diagnosis. When we reached the doctor s clinic and a detailed diagnosis was done, we learned that Manjunath suffered from liver cirrhosis. The cells in his liver had got damaged to form scar tissues which restricted smooth function of the liver. We also learned that since the symptoms of liver cirrhosis are silent, it doesn t get the much-needed attention until it is too late, as was the condition with us. In children, the progression from cirrhosis to complete liver failure is rapid. However, in Meghalaya where we stayed at that time, the doctors assured us that medications and treatments could make his condition stable but that two years down the line he might need a transplant. My husband and I went into a shock. We didn t know what to do. A major organ inside my son was dying, leaving him fragile.

That was when we moved to Kochi and got in touch with doctors of Amrita Institute of Medical Sciences (AIMS) where we heard that a lot of successful transplants were done.

A ray of hope

When we reached the hospital, we were asked to get in touch with Dr Sudhindharan, Head Liver Transplant, Amrita Institute of Medical Sciences, AIMS, Kochi. He performed a slew of tests to know the reason and ascertain the condition of the organ. A liver function test showed that his liver was full of nodules that made the entire organ non-functional. There was fluid accumulation in the tummy and he also suffered from jaundice. The tests were followed by a CT scan and MRI. The need of the hour was a liver transplant and the entire organ had to be removed. Yes, we couldn t wait for two years like the previous doctors had said, for the transplant. But the question that really worried me was why this problem had happened with my child. Did I do anything wrong as a mother? Did I miss out early signs? I could never find those answers and even the doctors couldn t tell us the cause for deterioration of the liver.

However, our focus now shifted to getting a donor for our son. One thing that gave us respite was that we didn t have to hunt for a deceased or remote donor. Our doctor said that either parent could turn into a donor. Both my husband and I had to undergo various tests to make sure we were healthy enough to be donors. In the case of a live donor for a liver transplant, a donor s age and weight are an important criterion. While my husband looked quite fit to be the donor, his test reports revealed a thyroid problem which crushed our hopes. I am obese and doctors had already warned me that I might not be the right candidate to be a donor. Obesity leads to a fatty liver and I didn t want my son to end up with another diseased liver. But miracles do happen, even though obesity made me prone to diseases like diabetes and heart diseases, my liver was perfectly healthy. So I became the donor.

On 10 February 2016, we were wheeled into the OT for the transplant. My son never understood what was happening around him. But he always looked at me with inquisitive eyes. All the tests and visits to the doctors were making him weaker. Before the operation, I told him that he would get better and that he would be able to run like a superhero, to which he just nodded and gave me a faint smile. I could still see hope and courage in his eyes.

Heading towards a new life

For a live donor like me, the transplant is partial, but the surgery is critical for the recipient. Dr Sudhindharan explained that a part of my left lobe of the liver would be taken out as it is smaller and best suited for the child. The right side of the liver is only taken during transplants when it happens between two adults as the right side has more volume. Manjunath s entire liver was removed and a part of my liver was transplanted in him. The surgery takes a couple of hours. While it is a minor operation for the donor, for the recipient, it is a life-saving one. One good thing about liver transplant is that unlike kidneys, heart or other major organs they have the least rate of rejection. My son was under observation for a couple of days and then discharged. The doctor assured me that the partial liver that I donated would grow back within two or three months. But that wasn t my concern. I wanted my son to survive and live a great life ahead. As it turned out, the part of my liver given to him started to grow in him and adjust with his body. Manjunath was on immunosuppressant to help the liver become a part of his own. Else the body s immune system could have attacked the liver thinking of it as a foreign element. Medications are now a part of his life and he will have to be on pills for the rest of his life. But five months into the surgery, his life has changed completely. Slowly but steadily he gained a few kilos. He can eat now and knows what it is like to feel hungry. My heart fills with joy when I see him play with other kids. I pray that he grows to be a strong man one day.

Image source: Shutterstock for representational purpose only

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