Dr Robert Baird enables us to impact lives like Mythili

Seventeen year old P Mythili is the youngest member of the family, her brother is elder by two years – he is nineteen and has led a healthy life. Mythili was a Christmas baby! She was born on Christmas Eve in 2002 at a Government Hospital in their home town – Coimbatore.

The family were overjoyed when they were told they had given life to a girl child as they consider it a symbol of prosperity. They went home content, that their family was now complete.
Just as then baby Mythili was getting the hang of rolling onto her side and could not be left unattended, her parents were jolted into the most testing time in their lives. The initial worrying symptoms were high fever and breathlessness. As any parent, one can imagine the panic that must have consumed the family. Even the slightest cold and cough can put you in a tizzy. In this instance, Mythili’s mother’s gut instinct veered her into a fearful space where she knew it was something serious. When they arrived at the doctors and he detected a murmur, a congenital heart defect was suspected.

Rathinam and her husband Perumal were asked to go to another Government hospital in Chennai so Mythili could get a more detailed evaluation. Now let’s try and understand how making what seems like a simple decision to you and me for traveling is a tough decision for families like theirs to make. Perumal would lose income, and they had another child to look after. Making arrangements for all of them to travel is impossible.

Perumal is a labourer who earns his livelihood by cutting trees in a forest, a monthly amount of about Rs 6000, but ten years ago when this whole ordeal started he earned around Rs 600 per month. He had to borrow Rs 3000 from his friends for the journey to Chennai. They did noteven know donation for child surgery in the form of NGOs even existed!

On the way, they stopped at their village temple and offered prayers to the Deity. They had faith that Chennai would be the answer for their daughter’s illness. The almighty only presents us with problems that each of us are equipped to handle.. they believed.

Once they arrived at the Government hospital in Chennai, an Echo was conducted. Perumal was told that Mythili had multiple holes in the heart and she needed to be admitted. They surrendered to any advice they were given, Mythili was admitted and all routine investigations were carried out. She spent a month in the hospital, under observation. When the day came for her to be discharged, both parents were told to come back when their girl turned ten for surgery.

Rathinam and Perumal felt relieved that they were going home and that for ten years they had nothing to worry about. When they arrived back in Coimbatore they even distributed sweets to their friends, with the hope that this was good news. With the passage of time, both children grew up and started attending school. Mythili and her brother had over the years cultivated an unbreakable bond. They go to school together and even study together when it’s time to do homework.. They have common friends, so they play together and are in every sense, inseparable.

When Mythili turned eleven, her parents took her back to Chennai. Withhope that it was the right time for surgery and soon their daughter would be perfectly fine. This reality that they had envisioned was far from the truth. The doctors told them that they did not have the infrastructure to carry out such a complex heart surgery and they could not be helped.

My question at this point of this family’s journey is – why were they not told this at the start?Personally it baffles me. If only they weren’t left directionless, if only there was proper assistance given to families like theirs. But these are the if’s and but’s of life to which we try and find solutions.

So, they returned home feeling like everything had been stripped away from them. Mythili returned back to school and her parents left it to fate. What choice did they have? Their awareness and capabilities did not allow them to know or do better.

More years passed, when she turned 17, Mythili got severely breathless in school and fainted. The principal called her parents and advised them to seek medical help at a private facility. They did exactly that – except this time, the diagnosis was more elaborate and helpful. She had Corrected Transposition of Great Arteries (CTGA) with VSD and Pulmonary Stenosis. In this condition there are two defects. The right ventricle grows on the left side of the heart and the left, grows on the right side of the heart. Also the two main blood vessels, the aorta and the pulmonary artery arise from the wrong chambers of the heart. Since the ventricles are in the wrong
positions, the left ventricle pumps impure blood into the pulmonary artery and the right ventricle pumps blood into the aorta. Hence she
needed TWO SURGERIES.

The family was referred to GKNM Hospital in Coimbatore itself, a partner hospital of our Foundation. Mythili was seen by the cardiologist and surgeon and both parents were counselled about the risks that were involved with such a surgery and the cost of making it happen. Perumal wanted a week to try and figure out how much he could arrange towards his daughter’s
surgery. They had lost so many years trying to find an answer and the time they had prayed for was now there before them, so he was
adamant that no stone would be left unturned. He borrowed money from his family and friends and managed to contribute a sum of Rs 1 Lakh towards a nearly 4 Lakh surgery, which in a course of time he would pay back.The hospital then reached out for donation for
child surgery to us and we committed to supporting approximately 2 Lakhs through our CSR partnership with Oracle India.

Mythili was admitted and the family were now touched with a hand of respite as Dr Christopher W Baird, a Pediatric Cardiac Surgeon from Boston Children’s Hospital was visiting GKNM Hospital. He along with Dr Vijay Kumar, together performed the ten hour surgery on brave Mythili. A new technique was used to perform this double switch surgery called the Ozaki’s Technique. In this method the pulmonary valve was recreated using the pericardium (the membrane enclosing the heart!).

Also a conduit was made using the same membrane, so no external conduit was required!! This even reduced the overall cost. Absolute brilliance and a technique that was done for the first time ever on the right chambers of the heart! On the 5 th day post-surgery Mythili had developed internal bleeding and had to undergo a Cardiac Cath to figure out the reason for bleeding. The results showed that she had some abnormal pathways to the lungs and they needed to be closed in a Cath Lab. So, just as the family felt they could breathe – they clung on once again with baited breath.

Slow and steady, Mythili won the never ending race to recovery. She was discharged after a long stay of three weeks. Her mother never left her sight and sat by her bedside throughout. Her father came every opportunity he got after work. To pay the massive loan back, he had to resume work, even if it was for a few hours.

Makes me truly reflect – here if my daughter has a cold I am able to work from home and on the flip side majority of this country doesn’t work with privileges like this! We truly take things we have for granted.

The hospital, the family and all of us at Genesis Foundation have been elated at the news that Mythili’s surgery went off well. Next session we look forward to hearing news that Mythili has re-joined school and is well on her way towards leading a perfectly normal life that was taken away from her for her entire childhood.

I remember last year when we supported a case where 3D technology was used, we were excited by the technology that can now be used to save lives. Once again we are humbled and grateful to our partner hospital, CSR partners who enable us to make ground-breaking impact in the lives of rare cases like Mythili and most importantly Dr Christopher Baird who was able to bring a unique skill of
performing the Ozaki Procedure which very few people have in this world, and so far none in India…

When people come together from all walks of life with different skill sets, and mind sets…. It creates magic, doesn’t it? It creates life and what could be more magical than life itself?

-Contributed by Simran Sagar

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