When I was blessed with a baby boy, I felt enormous joy with his arrival . It was such a happy and joyous moment for our entire family. I will never forget the moment when I held him in my arms for the first time. It’s engraved in my heart forever.
Since I had C section delivery, we stayed in hospital for next 4 days and he was in nursery under observation. Two days after coming home, Neel stopped taking my milk and his body started turning pale, So we rushed him to a nearby hospital.
The doctors told us that he had very mild symptoms of jaundice. During the treatment when they tried to inject him, he didn’t respond, his body became numb and he did not feel the pricking sensation.
So they decided to keep him under constant observation for next 24 hours and ran few tests but it was futile as they couldn’t quite understand what was happening with him. So the doctors suggested us to take him to Jaipur’s top paediatric hospital Neo Clinic.
Seeing Neel’s deteriorating condition, Neo Clinic’s doctors admitted him to NICU. After running multiple tests, they found that his Ammonia and Sodium levels were abnormally increasing. They suspected something odd which was not adding to his other medical reports so they decided to send his TMS and Urine sample to a top lab in Chennai.
On 16th Jan 2019, doctors told the most painful thing to me and my husband. My son was diagnosed with a metabolic disorder named MMA/PA. It’s a rare and genetic disorder in which the body can’t break down certain proteins. It is one of several conditions called “Inborn error of metabolism”.
My whole world came crashing down when I heard this. During counselling hours in the hospital, doctors told the things which no parents want to listen. They were not even sure of his survival. Instead of telling us about the medical treatment, prognosis, availability of testing, they forced us to think the unthinkable.
On the other hand, Neel was not ready to give up on life yet. He was breathing stronger every day for us. An infant was denied to have the milk of his own mother who gave him birth few days back because my milk was making him sick and eventually it was converting into Ammonia.
He needed special medical food (protein-free) to survive. We were helpless and clueless, how and where to find. After struggling for a few days, we finally got access to one Indian product in Bangalore, but Neel could not digest it. Every time I tried to feed him, he threw up. He was surviving on IVs.
Some time passed and doctors at Neo Clinic, Jaipur started losing hope, meanwhile, we were looking for other hospitals in India that deals in metabolic disorders. We came across Dr Sunita Bijarnia of Sir Ganga Ram Hospital, New Delhi, she came like a guiding force in our lives. On January 27, 2019, we decided to take him to Ganga Ram Hospital. He was severely dehydrated and his condition was worsening with each passing minute. Once again, he was shifted to NICU in SGRH.
In SGRH, Dr Sunita took this case very seriously and managed his feed within time, she got an imported medical product for Neel and started feeding him. His condition was improving but because of the weak immune system and longer lengths of stay in hospital he caught severe bloodstream infection (sepsis) and it led him to a ventilator.
Once again, he started battling. Once again my life became a nightmare. The constant beeps, wires, tubes, monitors and a dozen nurses and in the middle of it all was a tiny, fragile baby, struggling to breathe. Life doesn’t always go as planned. I tried not to break, I tried to gather some strength, I tried so hard. But it was getting really tough, I was losing my composure. The only lights that I could see, were dim lights of NICU. The only sound that I could hear, was that of monitors beep.
I saw him suffering, I saw him battling for life. There was a time when doctors could not locate a clean place on his body to insert the catheter because every part got swollen up due to multiple insertions. A central line was placed in his body that allowed multiple IV fluids to be given. It was too much for a mother to fathom. But Neel never gave up, his will power brought sunshine in our lives and he overcame all the hurdles.
He was ready to go home, on February 17, 2019, he finally got discharged and we took him to our home in Jaipur.
I was finally holding my baby for the first time outside the hospital. He is 21 months old now, ‘Hupp’ is his favourite word. He is fond of water, bathing is his favourite activity of the day.
Also, we have to import his food from the USA, with high import duty and unfortunately in this pandemic situation, we are struggling to manage that too. We need good medical infrastructure, proper screening tests and easy access to medical feed so that no Neel could survive.
I wish to establish programs and resources so that these obstacles can be removed. It’s a condition which can never be cured. However, it can be managed and controlled with proper access to health care.
In solidarity, with all the parents around the world who are fighting silent battles along with their children. You are not alone. We are all in this together.
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