20th August 2010

My daughter, MCAD and me……..

Like any other woman I was excited to learn that I was an expectant mother. I had a very easy pregnancy. I was working then as a voice and accent trainer, travelling from Thane to Malad everyday in a taxi, whose driver later became a part of our extended family. I continued to work till I was way into my 9th month. On August 20th 2004, we were blessed with a daughter. Unlike other women who connect with their unborn child, my bond and maternal instincts came only when I saw my daughter, held her and interacted with her. They grew leaps and bounds as my interaction grew. We brought her home and slowly started settling. Feeding, changing diapers, vaccinations…..Everything was like any other mother-child routine. We recorded her everyday little things and fussed about her.

When my daughter was 18 days old she had a sudden cardio respiratory failure. My neighbour and mom rushed her to the hospital next door. Next door is like the hospital and our building sharing the same compound. A few minutes delay and ………………When we got her to the hospital, she was immediately put in the ICU. Even before we did any paper work, she had the much needed medical attention. Soon after, the paediatrician walked out of the ICU and asked us to call our friends and relatives…..I thought he was uncomfortable talking to the womenfolk ( it was evening and none of the men were around) and thought we’d breakdown or something and would not be able to handle what was coming. Pam too was away on a business tour and I assured the doctor that I was prepared to take in what he’d have to say. Only later did I realise that that was a mistake. “The possibility of our little one seeing the next sunrise was farfetched”, he said. I was numb for sometime. It just wouldn’t sink in. And when it did, the world started collapsing.
Pam came in the next day and literally took the reins in his hands. I had never felt so helpless before. As he went into the ICU he noticed frail babies in glass cases with name tags that said Baby 1, Baby2...... and so on. He instantly registered our daughter’s name as ANOUSHKA. If we had had a son it would’ve been Adi but for a daughter we had quite a few names in mind. Going to an ICU where tiny babies lie helplessly surrounded by needles and gadgets and the sterile smell is painful. And with Anoushka in there, we were traumatised. We were silent with each other for most time. Pam used to run around on his bike getting Anoushka’s blood and urine samples tested across Mumbai. There was nothing to discuss or say to each other. Only a faint hope, a silent prayer. Everything was beyond our scope of understanding. We went in the ICU often to just check if Anoushka was still breathing. She was far too weak to cry. The doctors had still no answer but our daughter saw the light of the day..... day after day. As they ran tests after tests in the days to come to eliminate the possibility of any sort of infection, Anoushka looked weak and fragile with her hands and legs blue from the pricking. With all those tests Anoushka often got a blood transfusion from Pam. It was so difficult to even look at her. We spend sleepless nights consoling one another. After a good 10-15 days, the doctor told us that in one of the very advanced tests, our daughter was tested positive for a metabolic disorder called MCAD- Medium chain Aceyl dehydrogenase deficiency. What’s that??? We’d never heard of anything like that before. Simply put it is a rare chromosomal defect where the body cannot convert saturated fat into energy. Hence the body has to depend on sugar for all the energy. The carnitine levels in the body are low or absent and the child has to take oral supplements for life. The child cannot eat anything that has saturated fat- milk, milk products, chocolates, biscuits, all processed food, ghee, coconut basically anything that has MCT( medium chain triglyderides). These children need to be fed every 2 hours to avoid another incident of a cardio respiratory failure, till their body is fit enough. And yet starving for more than 4-5 hours can trigger off an unpleasant situation. Often these children develop a disability of some sort ranging from epilepsy to retardation, renal failure or paralysis, by the time they are 3. I was absolutely lost and shattered. We didn’t know a thing about this and the only child we’d ever have, had it. Now it was just about allowing all this to sink in and act........

I had already stopped feeding her for there is no way to know the type fat content in mother’s milk. And she was on a special formula that contained no MCT. We were asked to take Anoushka home on the 21st day or so with a list of instructions and do’s and don’ts. When we took her home she weighed a little more than 1 and ½ kilos and we set up an alarm for every 2 hours and day or night we fed her with the special formula. Slowly her weight increased. We spent day after day researching on this strange disorder that was unheard of in India. We contacted the big names in the medical industry but were surprised that they had little to offer. The machine that ran these tests had been imported for the 1st time India only a couple of months before Anoushka’s birth. And we trusted the results it had given us. But even the very renowned and only path lab that had bought this machine in Delhi was in the dark. They did not have answers to our questions. We spend hours on the net and found a support group in the U.S that helped us understand Anoushka’s condition. I spent sleepless nights reading through the newsletters and research papers, always noticing that Anoushka does not show any of the symptoms that these articles talk of. We wrote to all food companies from Nestle, HLL, Parle, Britania, to Marico and Johnson and Johnson requesting them to help us understand the ingredients in their food and cosmetic products so that we could possibly widen Anoushka’s dietary options. It was sad to know that we would not be able to give Anoushka all the “foody goodies” that children of her age gorge on. Our heart broke when she looked temptingly at a piece of cookie or ice cream. We made dietary changes in our food too to make things easier for her. And yet while doing all this I never stopped believing that Anoushka does not have MCAD.

My neighbours took to Anoushka like their own child. Six months old and Anoushka was off to one neighbour or the other. They dotted on her so much, bathing her, playing with her, buying her toys and stuff, even cooking food for her in MCT free oil and ensuring that she eat something every 2 hours. As she grew older and covered one developmental milestone after the other, with each passing day my doubts about her actually having this disorder strengthened. Suspicion started growing into conviction and we contacted the MAYO clinic in Boston. For three times in the 6 months that followed we send Anoushka’s blood and urine samples. Till...... they confirmed that she positively does not have MCAD or any other disorder. For over 2 years we lived a medical blunder..... And now with the MAYO clinic results we were speechless......It took a long time for the good news too to sink in. Today when I see Anoushka pour ghee on her rice, or gobble up a chocolate bar, I feel at peace. My happiness knows no bounds.

In those most difficult times all those who fed us, ferried us from one medical institution to the other, gave me a pillow to sleep on, held my hand and gave me hope, doctors, neighbours, family, friends and all others- near and dear ones, who offered us medical expertise, emotional, moral and financial support and kept us in their prayers, no words will help me express my gratitude to you. I am blessed to be surrounded by people like you.
Today as Anoushka turns six, I remember your unconditional love and kindness and support and everything that you did for us........All I can say is that we feel proud to know you.

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Anoushka's cardio respiratory failure was unexplained. We believe she lucky kid to survive the SIDS.( Sudden Infant Death Syndrome)