The Often Unnoticed Miracle

Every moment is an aeon when you always have the shadow of the grim reaper over you. The shadow is dark and at other times recedes into a not so distant horizon. Happy moments pass us by like fireflies in the dark. Glowing and dimming, so fast that we can hardly enjoy them when they are with us; we can only reminisce wistfully. Moments of pain seem to last ages, festering sores in the conscious, leaving indelible scars in the unconscious.

To be alive is a miracle…to be born healthy is the greatest of miracles. Witnessing the excess of physical ailments in the world, congenital and acquired, one must be grateful to one’s maker were one to be “normal”. To all those of us who take life for granted, who crib about every little inconvenience, every little cold and cough…to us who are “fortunate to be normal” here is a small story about the not so fortunate Amita Sahoo. The second child of Raj Kishore Sahoo and Renu Bala Sahoo entered the world with the plaintive cry of a newborn ejected into the cold world from the warm cocoon of the womb. Prayers and tokens of gratitude were immediately offered to the mother Goddess: the presiding deity of their family, village clan, and town. Kantapada, the village of her birth close to Niali town, falls under the Khurda District of Orissa. It is also close to Kakatpur, which is famous for the deity Kakatpur Mangala, a form of the Mother Goddess. Legend goes that the Divine Mother willed that sixteen of her forms should govern sixteen parts of Orissa, and Kakatpur Mangala is one of those forms.
		District of Khurda in the state of Orissa

		Amita’s Plight The parents named their child Amita – meaning plethora or plenty (in their tongue ‘Oriya’); one other connotation is “unlimited”. They were blissfully unaware of what fate held in store, behind the beautiful dark eyes of their little daughter. It was in the seventh month of Amita’s earthly sojourn that she was diagnosed as having a congenital heart disease. Dr. Minati Padhi, pediatrician at Bhubaneshwar Unit VI Government hospital, who diagnosed the disease, opined that medical management was of no avail and only surgical intervention could help. “The problem is too complicated and the child needs to grow up for anything to be done. Bring her back when she is older and stronger, we will see what can be done. Till then we can only hope that the problem will not worsen and lead to irreversible complications. And there is no medicine that can be administered as a remedy.”
Amitha - struck by destiny, not forever though

The parents could only accept the play of destiny as an act of God, but they were a practical couple. They did not allow this Damocles’ sword to influence their daughter’s normal life. From their end they endeavored to help Amita lead as normal a life as possible. On the occasion when the malady raised its hood and things skewed out of control they took her to pediatricians in different medical institutions like Dr.Gangadhar Saranghi, a pediatrician in a private clinic and the Kalinga hospital in Bhubaneshwar. But all this was only to assuage their conscience that they were trying their best for her. They knew that surgery was the only option. But what was the surgery and who would do it? They at last approached a cardiologist, the late Dr. Mrityunjay Satpathi in Cuttack, who gave the final diagnosis as: DORV VSD PS (Double Outlet Right Ventricle, Ventricular Septal Defect, Pulmonay Stenosis). He pegged the cost of surgery at about 1,70,000/-. He also warned them that post operatively she may have to take different types of medication depending upon what complications arose. It was not a pretty picture - but he gave them hope.

The risk to life was a glaring reality. Surgery would help their daughter but…there was a risk and without surgery she was definitely at risk. Between a rock and a hard place, they sent out messages to their kith and kin asking for a good reference – a good center where they could have the surgery done with minimum expense. They had already spent more than Rs10,000/- in just diagnostic and radiological procedures. And they even had to plan for the post operative contingencies.

There is Hope, Finally

It is said the night is darkest before dawn and the hill steepest near the summit. When the shadow loomed over them dark and foreboding, they received a call. Renu Bala’s brother, Krishna Ranjan Sahoo working as a software engineer at Oracle in Bangalore called up to tell them about the Sri Sathya Sai Institute of Higher Medical Sciences, Whitefield. “…a super specialty hospital that offers Medicare totally free of cost. Come and try, this may be her chance,” he advised. Raj Kishore said,

“To be honest, in a hospital where we pay money we can demand services – but we had our doubts that since this is a free hospital will our voice be heard? Will we be able to get what is needed? We anticipated that we would have to accept what was given and keep quiet.”

But, with hope carrying them on its wings, they came to Bangalore. And to their amazement, their child was immediately admitted into the hospital.

The Medical Diagnosis and Prognosis

After examining her, the Cardiologists gave their clinical diagnosis: DORV with Single large S/A VSD, Severe Valvular and infundibular PS, Left juxtaposition of RA Appendage. Good sized Confluent PA’s. Good biventricular function. Normal coronaries, no additional VSD, AR , PDA, COA. Aorta anterior to PA.

A normal heart has four chambers, two atria on top and two ventricles at the bottom. To put it simply, this is what happens in the heart - deoxygenated blood enters the right atrium flows to the right ventricle, is pumped to the lungs, gets oxygenated, flows to the left atrium, drains into the left ventricle and is then pumped to the rest of the body. In Amita’s case the wall between the ventricles (inter ventricular septum) had a big hole in it (VSD - Ventricular Septal Defect) so big that both ventricles were almost a single ventricle. This caused the pure and impure blood to mix and a total variation in the pumping capacity of the heart. Also her pulmonary valve was stenosed (blocked/hardened). She also had a small Left Superior Vena Cava (which drains impure blood from the head to the heart). In addition, the two great arteries were almost arising out of one single ventricle. These were the major problem makers. Generally when a patient has a hole in the ventricle wall it is surgically closed using a pericardial or a Dacron patch. But when the hole is so large as to almost combine both the ventricles into one chamber, a normal closure is not possible. A different approach has to be taken.
		Inside the human heart...

The surgeons had choices: the Kawashima procedure and the Fontan procedure. Whatever they did, the procedure would only be palliative and not curative; such was the anomaly. They finally decided upon the corrective procedure of TCPC: Total Cavo Pulmonary Correction – Fontan procedure.

The Complex Operation Commences

On the 28th of June 2006, Amita was wheeled into the operation theatre and the ‘Extracardiac Fenestrated Fontan’ operation done. The Inferior Vena Cava that drains blood from the lower parts of the body into the heart was connected to the Main Pulmonary Artery that directs the blood to the lungs, using an 18mm Haemashield graft, with a fenestration (hole) connecting to the Right Atrium. The Superior Vena Cava draining blood from the head was attached to the Right Pulmonary Artery. The Left Superior Vena Cava was attached to the Left Pulmonary Artery. Procedure completed, she was shifted to the Intensive Care Unit and kept under observation.

After the first 24 hours the surgeons noted a new complication. Though her pressures were fine, her cardiac output was falling. This could lead to failure if not corrected soon. So the surgeons once again discussed the options with the cardiologists and then decided to partially undo the previous procedure. A procedure called ‘takedown Fontan’ was decided upon and to also convert the correction into a Bilateral Bidirectional Glenn or Kawashima with Septostomy (the surgical creation of an opening). When shifted to the ICU and under observation for 24 hours, her condition improved and all the parameters returned to acceptable levels. The second surgery was a success and she was on the path to recovery.

		Amita’s Life – Truly ‘Unlimited’ Now Gradually, she recovered and is now ready to lead an “Amita” life – a life filled with a plethora of “unlimited” opportunity and enterprise. On being asked what future plans they have for their daughter the father replied, “Amita is a good artist, she draws well!” “Pencil sketches” Added Amita “She cannot do much hard work,” continued her father. “So we will allow her to pursue her hobby of sketching and drawing and perhaps in the future with sufficient training she can take it up as a profession.” The daughter smiled bashfully as the father continued describing her skills.
Amitha... ready for a new promising life

Amita will now be able to watch every sunrise and sunset tinted with her favorite color - red. The color that rushes though her heart and the color that rushes into her cheeks when she blushes. She does not have to be told how lucky she is to be alive and be able to lead a normal life. To be alive is a miracle - and Amita knows that she is a miracle.

‘This Hospital is Veritably Heaven’

The original doubts of her parents have dissolved and have been replaced with a conviction that this Hospital embodies their concept of heaven,

“This Hospital is veritably heaven; everyone is so pleasant and we were treated very well! Were we to receive an opportunity we would like to come and do seva here once our daughter recovers her health.” They came with trepidation and left with contentment. They were afraid of what to expect and now leave with the confidence that they are always welcome. Raj echoed this sentiment when he said, “We did not expect so much to be available. The hospitals we visited elsewhere were so different. Here it is so peaceful and quiet. The doctors, sisters and sevadals are polite and well mannered and we did not face any problems. Here we found people are willing to listen to us and sometimes go out of the way to help us and make us feel comfortable. And we got the best of treatment for our daughter totally free of cost. We have not seen or heard of any heaven. For us, truly this is heaven.”
		"We got the best totally free" - Amitha's parents

In this temple of healing there is no room for negativity. Could this recovery be possible elsewhere? Yes, for sure the surgical procedures are performed elsewhere and prognosis has been good. But is that what can change minds? Lives yes, but minds? To be able to excise the misery and implant hope; to truncate despair and anastamose a new lease of life is far more complicated than Fontans and Kawashimas. There is always a silver lining to the cloud. And more often than not the dark cloud blows away revealing the dazzling Sun behind. There is always a “Tomorrow”.

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– Heart2Heart Team

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