A SMALL STEP FOR A CHILD, A GIANT LEAP FOR A PEDIATRIC CARDIAC PROGRAM

Earlier this month, baby K came to our clinic for her first follow up after Fontan completion in February. Her SpO2 is 95% and she is only on anti-coagulants. Her heart function is normal, her AV valve is competent and her venous pathways demonstrate laminar flows with no evidence of any clots. She was her usual sprightly self and it was challenging to complete her echocardiogram while she kept getting up to view the screen and check if my echo images were satisfactory. She wanted to make sure the Diary Milk she ate in the morning was being digested 😁

This was, for all practical purposes, a routine clinic visit. However, baby K is very special to me and our small program. She is our first child with a functionally univentricular heart who has undergone all 3 stages of univentricular palliation under our guidance

She was one of our very first patients when we started the program in 2018. She presented to us in July 2018 at 5 months of age. She only weighed 3.5 kg at that time while her twin brother weighed 5 kg. She was huffing and puffing and couldn't even drink 5 ml of milk without pausing. She had tricuspid atresia with concordant VA connections and unobstructed outflows. She had been evaluated at two other pediatric cardiac centres and was not offered surgery. The family had significant financial challenges

Funding univentricular palliation in India is much more difficult than funding full repairs. Donors would prefer their contributions to reach a child who is "cured" and can expect a normal life. Hence it becomes challening to justify palliative surgeries. Univentricular palliation requires multiple procedures for the same child (including diagnostic catheterisations) and this provides the impression that our treatment is not working to the uninitiated

However, we were able to organise funding with great difficulty for her. She underwent a pulmonary artery band at AIMS, Kochi in late July 2018. Her parents left her 5 month old brother with her grandparents and came with her for the surgery. This was their first travel outside the state and the parents were apprehensive about their stay during the surgery. However. they were determined to provide the best chance for their little girl. At that time, the mother was 20 years old and the father was 22. The father worked in a local shop while the mother was a homemaker. They had a healthy twin boy who was growing well. In such cases , the entire family ( and sometimes even the doctors caring for the child) actively discourage the parents from pursuing treatment for a child with heart disease and ask them to focus only on the normal child. Many children are often allowed to die (or suffer with heart failure) without an intervention. I am sure this was the case with this family as well but surprisingly the parents did not succumb to this advice and pursued treatment through all possible avenues

The initial post op recovery was uneventful. Sadly, she developed a wound infection which progressed to mediastinitis. She had to be placed on a VAC dressing and a central line was placed for antibiotic therapy. This meant an additional 4 -6 weeks of hospital stay. We had great difficulty in organising the funding for the surgery. Now, the additional expenses were becoming an insurmountable challenge. There were moments when I started cursing myself for offering treatment for this child. The surgeon I am sure wrote off his entire professional fees. We managed to "beg, borrow and steal" the expenses required for hospital care

But a 2 month hospital stay also comes with personal expenses for the family including food. Kerala cuisine can sometimes be unpalatable for Tamils with the large rice particles and the coconut oil used for cooking. It was beginning to show on the parents. Although the hospitalisation was free (for them), there was complete loss of livelihood with the additional expenses of staying away from home. The mother had also left her other small baby at home and had started to miss him dearly. The "Kerala floods of August 2018" further compounded their woes. The parents watched from the fourth floor with fear as the water washed everything around them and also entered inside the hospital. It became difficult to find cheap food as the small food stalls around the hospital shut shop because of the floods. The mother was determined to give the best for her little one through all difficulties and she slowly made progress and was discharged after 2 months in the hospital

At discharge, she was 7 months old and weighed only 4 kg. She also had significant developmental delay and had not even attained head holding. Her heart failure had improved and she was feeding well without becoming breathless. The mother followed up religiously with me at Tiny Hearts every 2 months. There was developmental delay and her weight gain was slow. Her primary pediatrician advised her to get a second opinion from a different pediatric cardiologist about the right course of management but she had an unassailable faith in me and refused the offer. There were many times when she was close to losing her composure. She showed videos of the twins demonstrating normal activity of the boy with her lagging behind. At 1 year and 4 months, she had just started sitting with support and weighed 7 kg. However, she was a very alert and sharp child and this reinforced her mother's determination to invest fully in her growth and development

At this point, I developed enough courage to plunge in another round of fundraising for her. We then proceeded with bilateral superior cave-pulmonary connection at 17 months of age. Mercifully, the recovery after this surgery was uneventful. The transformation after stage II palliation was stark. She started gaining weight quickly and also started walking by 22 months. At 3 years, it was impossible to differentiate her activities from that of her brother and there was only a 1 kg weight difference between the two. She was able to keep up with her brother while running and fighting. It was only the mother's determination which had pulled me (as well as the father) through the tumultuous path of treating this child. At many points during this course, I had my doubts about the appropriateness of the path chosen but at 3 years I had to admit that the mother was right and everyone of us who had our doubts and questioned out (and her) sanity was wrong

I subjected her to a pre Fontan Cath at 4 years of age. The numbers were good and she was ready for a Fontan completion. The surgery was delayed by a few months as we sorted funding for the same and she underwent her surgery just a month before her 5th birthday. She literally flew out of the hospital and was home on the 6th post-operative day

As I reflect on out journey over the last 5 years, I go back to SHRI KRISHNA's words in the BHAGAVAD GITA on KARMA YOGA. None of us who treated this child strongly believed we will provide her a "normal" childhood yet we persisted doing what was right for her without any expectations about the"end result". Yet MIRACLES DID HAPPEN